Don't bother, if you're in a position to do so, help them find a first-class brain surgeon. Get them into Sloan Kettering, Mayo, Duke or OHSU or whoever. Help them look for clinical trials to get chemo past the blood-brain barrier (I've heard some promising things in this area, though I'm not sure if it's being tested on humans yet). If they have a family that's taking care of them, offer to help them. Even just a grocery trip a week or something would be a massive help (obviously this depends on how close you are to them but you get the picture). Hell, offer to just hang out with your friend for a few hours so the family can get out and decompress for a bit if they need to.
Don't let them fall into the false hope of "I might have 5-10 more years". The person I knew fell into that and did absolutely nothing they wanted to do before they died because they were in denial and kept holding onto the expectation that they'd get better.
If they have money, every cockroach will come out of the woodwork trying to get a piece. Watch out for them if you can.
I know someone who got scammed out of a very substantial amount by a real brain surgeon in America(!!!), who referred them to a guy that sold a bogus device which he claimed would "destroy the tumor" (no FCC sticker on it and the entire thing was controlled by a Raspberry Pi when I disassembled it). Brain surgeon had a bunch of FDA complaints against them too and performed it in one of the poorest cities in the country, across the street from a burnt out apartment building. The local pharmacy had a constant police presence because of armed robberies for the drugs. These details scream sketch to normal people, but normal people aren't going to be dying of brain cancer in the foreseeable future. Desperate people will do crazy things if they think it offers some hope.
> going to a first-class brain surgeon is no less a moonshot than any other bio hacks I can find online
American "physicians received significantly less intensive care than the general population" at the end of their lives [1]. (Canadian physicians "used both intensive and palliative care more than nonphysicians" [2].)
The lesson seems to be yes, go ahead and pursue your moonshots, but don't let that cloud the reality of the situation and don't let the moonshots debilitate what little time you have left.
I'm sorry about your friend! Really, it's friends, I think... It's not fair to them, but its exceptionally unfair to you too.
It'd admirable that you're trying to help, that's the kinda person that I want to be when I, eventually, grow up.
I do wanna suggest that in the middle of taking care of your friends, you don't forget to take care af yourself. I give this advice knowing I'd never follow it, so maybe I should say try to ignore yourself as little as possible.
The OP you replied to is right, and if you read it again, you'll notice his actual recommendation wasn't any kind of moonshot. If you still don't see it, remember that in addition to the person diagnosed with cancer, the stages of grief hit their friends and family too.
I'm sorry for how messed up the whole thing is dude, and hope you'll be ok.
End of life bucket lists are a strange thing, I recall a close family member who entered hospice. They kept attempting to use their credit card to pay for all expenses, dinners, etc.
Of course, everyone around wanted to contribute - this person was not well off, the credit card was not used for much.
It took some weeks later after they passed for me to realize that they knew it was a credit card bill they would never need to pay. In all likelihood others contributions simply blocked them from feeling that they were contributing.
Lsd works in the sense that it makes you not care about dying that much, the ego death helps.
Combine that with ketamine for a nice anti depressant effect and you got a really good party going.
Why not do mdma also to kill the ptsd, maybe a visit a psytance festival instead of the hospital?
Jokes aside, its sad to prepare for death. I think drugs are not the answer, but they can help too. Depends on the people. Maybe hallucinogens trigger mental illness too. I dont recommend anyone to take drugs.
It's not "drugs", it's science and therapy. Huge difference. And yeah, fun fact: both ketamine and mdma are also used in therapies and are researched for decades now.
Hallucinogenic drugs can cause very disturbing thoughts and visions. One may be left feeling afraid and insecure after taking them, losing any progress one has made toward acceptance of death.
That’s probably why the suggestion was to look into psychedelic therapy, which utilizes a trained and experienced therapist in a controlled environment, rather than to hand their friend a strip of blotter.
I know when someone’s faced with certain death they’ll do almost anything they can to survive if only for a little bit longer, but this thread full of personal antectodes and largely non-reproduced effects from random pubmed articles is the hackernews equivalent of essential oils or smth
OP is explicitly asking for hacks and "out there" solutions, I think this is a reasonable place to post anecdata, papers, personal theories, etc. as long as people state their confidence level and link to sources when possible
> OP is explicitly asking for hacks and "out there" solutions, I think this is a reasonable place to post anecdata, papers, personal theories, etc. as long as people state their confidence level and link to sources when possible
As long as OP and their friend know this is spinning wheels for fun and is pretty much certainly not going to extend their lifespan, sure. There can be satisfcation in knowing you never truly came--nor will ever come--to terms with death.
> post reads a bit like one of those stackoverflow questions seeking a solution to x when that’s not the problem they should be solving
Sort of. They're looking to be a good friend and assuage perceived helplessness in the face of a repeat foe. )=(From a clinical perspective, the most-useful observation in the thread may be the unusual frequency with which this person has seen GBM.)
More broadly, we tell the stories of Sancho following Don Quixote through windmills, or Sam following Frodo to Mordor, because loyalty over reality is itself a reality of humanity. Like Sancho or Sam, our role in that journey is less to weigh its merits and more to keep our hero from cliffs. That, however, means the person playing that role has to see clearly.
As someone who nearly died a little over two years ago from cancer... It's irresponsible.
Point to the experts, but don't cause further pain through at best, false hope, and at worst, a murderous experience for your last few days.
Lots of people want to help. That leads to questions like this. You're desperate to help someone who is suffering. But you will absolutely make that suffering worse if you act through ignorance.
As someone with a mother, stepfather and multiple extended family members who've survived cancer thanks to modern medical science, all I can say is hopefully their friend at least asked before OP went out looking for these harebrained schemes.
I disagree. OP is just asking for medical misinformation, and it would be irresponsible to provide it.
Self-assessed confidence levels are basically useless because the most confident people are generally the most ignorant. It's causal: ignorance causes people to be confident. The more you know, the more you realize how little you know.
OP is asking for lesser-known possible treatments/trials/diets/whatever for a friend who is probably weeks to months from death. And your contribution is to stop people from helping them because of something about what now?
> And your contribution is to stop people from helping them
No. In the vast majority of cases, answering this question as intended isn't helping them, it's actively harming them.
> because of something about what now
You're responding to a post which explains this. If you understood the post, faking confusion is dishonest. If you didn't understand the post, you weren't qualified to disagree with it.
This removes so much agency from the people involved. If I were dying of cancer and asked for "out there" solutions, I wouldn't want people hand-wringing about whether it's morally ok to share unconfirmed theories.
Gimme everything you got at all levels of certainty, and let me decide what I want to try and not try. If I decide I don't want to try anything, or none of the suggestions have enough evidence to be worth trying and I'd rather travel around the world and skydive with my wife the last few months, that's ok too!
But none of us can pretend to know what they're actually going through, we can only offer what it asked and let them decide.
> This removes so much agency from the people involved.
No. Filling people's minds with garbage non-information does not empower them. Knowledge is power. Random bullshit ideas isn't.
> If I were dying of cancer and asked for "out there" solutions,
OP isn't dying of cancer, and as far as I can tell, their friend who is dying of cancer did not ask for solutions of any kind.
You're trying to appeal to empathy here, but as far as I can tell, the person you're asking me to empathize with doesn't exist. There is no person dying of cancer asking for Hacker News' unqualified medical advice that I'm aware of.
The vast majority of people do not share the "move fast and break things" mentality--this is actually one of the main reasons people dislike corporate culture. This is especially true with medicine. Leave the poor cancer patient alone.
> Gimme everything you got at all levels of certainty, and let me decide what I want to try and not try. If I decide I don't want to try anything, or none of the suggestions have enough evidence to be worth trying and I'd rather travel around the world and skydive with my wife the last few months, that's ok too!
Agency isn't that easy. There are myriads of advertisers and propagandists out there trying to spin a narrative, and a lot of the hare-brained ideas out there exist because someone is trying to manipulate you--to buy a product, vote for a person, etc. These people are good at what they do, and even if you catch on to a few of them and dodge their bad ideas, a lot of them are going to worm into your brain and get you to do something they want you to do. Let me reitrate: what they want you to do, not what you, at a fundamental level, want to do. That's not agency, that's you being manipulated.
There is not a shortage of information, there is a shortage of effective filters of information that separate out the truth. Humans simply are not capable of sifting through all the garbage ideas out there, and that includes you (and me!). If you open yourself up to the full stream of garbage ideas, that doesn't give you agency, that gives your agency away to the advertiser or propagandist who happens to trigger your biases most effectively. You're not doing what you want, you're doing what they've manipulated you to want.
> But none of us can pretend to know what they're actually going through, we can only offer what it asked and let them decide.
Believe it or not, OP is not the only person to have a friend dying of cancer.
A friend of mine in college was diagnosed with lymphoma late in his sophomore year and died about a year after graduation. In his last years he became increasingly hostile to the well-intentioned people who kept offering genuinely stupid ideas for how he could cure his cancer. It isn't fun for cancer patients to have to politely listen to this particularly unhealthy way of coping with their death while they are trying to cope with their own death.
Reading other accounts of people with cancer, this is a pretty common complaint.
> Knowledge is power. Random bullshit ideas isn't.
Every proven idea started as a random bullshit idea. No one in this thread is presenting their ideas as definitive solutions as far as I see, everyone is being pretty good about providing their confidence levels and sources.
> what they want you to do, not what you, at a fundamental level, want to do
This is a whole philosophical rabbit hole about advertising and free will in general, it's not specific to OP's case so I don't really want to get into it, that discussion is better had on Reddit or some other HN thread.
> Every proven idea started as a random bullshit idea.
No, actually, almost no proven ideas start this way. Ideas which ultimately solve problems in a complex field, generally require a great deal of expertise to discover. Penicillin was discovered by doctors, insulin was discovered by doctors.
We all love the myth of an outsider who revolutionizes a field they were excluded from, but the reality is that someone like Florence Nightingale was excluded from medicine because of her gender, not because of her lack of subject expertise. The people who make groundbreaking discoveries in a field are almost universally experts in that field.
Sure, maybe in some new field that's in its infancy, a random person has a chance of discovering something useful, but oncology isn't that--we've got centuries of study of cancers.
Really? Let's look:
> No one in this thread is presenting their ideas as definitive solutions as far as I see, everyone is being pretty good about providing their confidence levels and sources.
Really? Let's take a look:
1. "Meanwhile, it is proven that the Zika virus does kill GBM cells in humans. This is what causes microcephaly in newborns. Inoculating the Zika virus in a controlled environment yields zero risk, and has no side effects." Poster gives sources, but the sources don't say what he claims they say, because you know, randos of the internet aren't actually capable of reading medical studies.
2. "To give you the short version of the story about how it works for HER: taking bloodroot causes the cancer to shrink too small to take a biopsy, but not go into remission, and when she stops taking it per the doctors advice, it gets very large and they start talking about surgery." Seems pretty confident that there's a causal relationship between the remission and his mom poisoning herself. Luckily another poster posted this: https://jakeseliger.com/2024/07/29/more-isnt-always-better-d...
3. "Have you looked into ivermectin and fenbendazole?" Later, when criticized, user posts: "The linked study claims it has potential." User provides two linked studies. Both links DO NOT claim it has potential, because, you know, randos on the internet are not capable of reading medical studies.
Let me be clear: the confidence level of a non-oncologist in an oncological solution is worth about as much as what I flushed down the toilet this morning. These aren't confidence levels, they're arrogance levels of people thinking they know things they don't. And contrary to your claim, there are a lot of pretty "confident" people posting here about things they should have a great deal less confidence about.
> As for the rest, I think this other commenter said it better than I can:
> I'm not sure why all the hate.
The hate has been thoroughly explained, but your linked poster isn't any more capable of reading Hacker News posts than they are of reading medical journals, apparently.
My impression formed from my time in cancer drug discovery is that bro science is, within practical bounds, a perfectly reasonable option for one arm of a comprehensive plan for treatment.
A lot of things that sound like bro science are actually broadly supported in the literature. But studying this stuff is hard because of all of the usual issues with human subjects, the less than complete reliability of our epistemic institutions, and the infeasibility of running enough trials to address every indication in every subcohort. So if anecdata supports some intervention that that isn't aggressively inconsistent with basic theory, won't make you miserable for what might be the rest of your life, and which you could try with the sober understanding that your One Weird Trick might not work, why not?
If nothing else, a well-documented case study with good adherence tells us of one more thing that didn't work, which is hardly the worst parting gift to the world.
Every single person I know who died from cancer young went down this route, from trying weird cures to going and seeing John of God in Brazil. Zero cured or delayed the cancer. All delayed acceptance and GREATLY regretted wasting that time and wishing they had had more time in the acceptance phase not the 'this can't be real' 'I can't die' 'There has to be something' denial.
This can and does hurt them, and is cruel. If they want to inflict in upon themselves, that is one thing. But to do it because OP has had enough losing friends is selfish. You will never stop losing friends to death, in fact, it will only accelerate from here on out. It will never get easy. In fact, it compounds as more and more joy/light/goodness leaves the world and those you turned to for support are gone. It's part of the deal they made when our parents volunteered us for this existence.
My own view is not that self-experimentation is an appropriate, let alone likely efficacious, substitute for reconciliation to the idea of one's death. I certainly don't endorse interference in others' treatment, however well-intentioned. If you want to say: "you shouldn't treat your terminal illness like a science fair project unless you possess extreme sang froid and are precommitted to the acceptance of your death", I'd find that totally reasonable.
But my own view is rather that institutional epistemology is somewhat overrated, and self-experimentation somewhat underrated, relative to the conventional wisdom. (Though some people go too far in this direction.) This leads to general overconfidence in epistemic efficient market hypothesis arguments ("if a protocol were worthwhile, someone would have found it already") and underconfidence in the value of crowd-sourcing trying a bunch of stuff and writing it down. This view was principally informed by developing cancer drugs for a living and coming to appreciate that it's really hard, your knowledge of what's going on during a clinical trial is highly abstracted, and you can't be everywhere at once. It was secondarily informed by watching people do bro science on certain important questions and making interesting progress in large part because they could move much faster than academic or corporate research.
If we recast the point of contention as: "what is the largest effect size that could be found by an institution outside of academia or industry?", my position is that it's plausibly non-zero.
I'm sorry for your friends and I hope they found peace.
As a pure numbers game, I’d find it more surprising if “broscience” never found a result:
- a lot of terminal patients are prone to experimenting
- their overall number probably eclipses the total number of trial patients in a given year by at least one order of magnitude and I’d believe two or three
- they don’t have institutional barriers to what they can try, eg, they’ll fund non-patentable treatments
- a lot of their approaches are taking things from published papers and trying to recreate similar effects (eg, calorie control [1])
That they’ve stumbled across at least one treatment that solved at least one case for at least one patient seems likely. Isolating that from incorrect null results is where the epistemological struggle is. And there’s a good chance that it won’t help you with your particular case.
But what’s the harm in trying? — you’re probably going to die anyway.
When you try someone else's "broscience", you're not really experimenting with the unknown, so it's unlikely you're going to stumble into a "result". They know it doesn't work. If it did work, they'd have patented it and licensed it to Merck or Pfizer.
I think your argument is that developing cancer treatments is really hard and the clinical trial process has problems. I can believe it. Do you think the mainstream epistemological process produces more false negatives or more false positives? What's the proportion of cases where a chemist finds a compound that really works, but the process incorrectly rules it out, vs cases where something that doesn't really do much still comes out the other end as a marketable drug?
I'm not in the industry, so what do I know? But I kind of doubt there are actual, effective treatments just sitting there unmonetized in Merck's basement library because the company is slow and the process makes things difficult. Especially the kinds of things that get mentioned in HN threads that don't require any chemistry research and are pretty straightforward to test, like fasting, meditation and yoga.
TBC I have no reason to believe that Big Pharma is deliberately withholding effective treatments it knows about so much as making (understandable) decisions not to investigate them in the first place. The total addressable market of a potential therapy is a central consideration for target selection-- you're roughly trying to maximize patient population times marginal willingness to pay over the standard of care. I don't think there's anything nefarious about this btw, you have to do what makes the greatest difference.
But that does mean that if you have a hyper-specific rare disease, the person who is willing to spend the most time thinking about it may very well be you. Or if you're living far from a major hospital and getting treated by a generalist with a heavy case load, you might be the most invested person within 500 miles of you, which is almost the same thing but better because you can still read the literature.
I wouldn't encourage the average patient to try doing rational drug design in their garage, but one could ask: "are there things that look promising that are still a year out from clinical trials?" and think about how to DIY some approximation to that.
At the extreme end of this spectrum, you have people like Beata Halassy who did just that, treating her own cancer with DIY viral therapy (https://www.nature.com/articles/d41586-024-03647-0, and please do note all the finger-wagging about how terrible and irresponsible of her it was to save her own life). Why did she have to do that instead of just going to a doctor? Because the route to the clinic is too slow. Why is the route to the clinic too slow? Because FDA has the institutional incentives that it's better that ten thousand patients die for lack of a cure than one die of quackery. Why's that? Because the FDA gets penalized for bad treatments but not for treatments that don't exist. But I say that dying of lack of a cure is not much better than dying of quackery, so we might as well minimize total deaths.
At the somewhat less extreme end, you have ideas like trying to treat GBM with Zika virus, which has a sketch of a mechanistic explanation and some support in animal models, but afaict no clinical trials yet (https://clinicaltrials.gov/search?cond=GBM&intr=Zika). Is this a cure for GBM? Complete BS? Something in between? I have no idea, which is kind of my point-- no one knows yet. Regulators probably aren't that jazzed about signing off on giving neurotropic viruses to immunocompromised patients without a lot of prior evidence that will give them cover for making that call if something goes wrong (which it totally might!). But an individual patient might look at that question with a different set of incentives.
Or consider psychiatric treatment of various mental illnesses. The best and most honest psychs I know will tell you that, past a certain point, responsiveness to a given drug is idiosyncratic and the state of the art is really just "try a bunch of stuff until something works", without much concern for hypotheses about underlying mechanisms. Is that rational medicine or bro science? Something in between, I think. And is it possible that there are behavioral protocols that help one particular schizophrenia patient to manage their quality of life better than the standard of care as defined for the entire population? Given that no one really agrees about what schizophrenia even is, this seems not totally impossible.
And then at the other end of the spectrum you basically have lifestyle interventions, as you note. Almost everyone agrees that certain of these are good for you, but some are really difficult to implement and adhere to. It seems reasonable to self-experiment with those things.
If this was the case there would be facilities in remote countries with lax law making billions off of curing cancer. While there are indeed facilities in countries with lax laws doing questionable medicine, none are known for actually working. Instead they are known for preying on people. The fact that successful facilities don't exist indicates to me that your hypothesis is incorrect.
As I’ve pointed out elsewhere, I don’t think curing cancer is the bar for sober self-experimentation. “Noticeable amelioration of disease” is.
There is substantial regulatory burden that prevents US-based companies from doing what you suggest. In fact there is regulatory burden that prevents things that 99% of American voters would prefer, like having reciprocity agreements that allow you to take any drug that had already been approved in Europe. It’s instructive to look at the case of Halassy and notice how much reflexive resistance there is to even the most self-evidently good ideas.
To make things concrete, here’s a practical idea: write down everything you eat while on a medication and rate your subjective well being everyday. Look for patterns. If anything jumps out at you, try eliminating it and seeing if your subjective wellbeing improves. Is this method fool-proof and without failure modes? Of course not. Is the prior probability that you’re eating at least one thing that’s unknowingly contraindicated for your condition / treatment pair very low? Also no.
My model is that the rate limiting factor for spotting unknown contraindications mostly just individual attention / discipline, so EMH arguments are unresponsive to this factor.
Consider the following argument: if obesity were such a big health problem, why is everyone fat? Mostly because losing weight is really hard, which I sympathize with but don’t take as an indication that it’s impossible to do anything about it.
In fact we don’t even have to bring disease into it at all. I’m sure that if i did a systematic elimination diet i would find one or two common foods that really didn’t agree with me, which i could make noticeable differences in QoL by avoiding. Why don’t I? Mostly because I’m just too lazy, and I’m fine with copping to that. But i don’t think it’s crazy for someone to choose otherwise, especially if they had a higher upside.
True. But for the highest-grade nasties, where median life expectancy is unfortunately short and progression near-universal, you don't need much signal to get above the noise.
Anyone surviving more than a handful of years with something like that is an outlier such as to merit a full work-back, and at that point it's no longer bro science.
I think that's partly a survivor (the disease surviving, not the patient) bias effect.
Things that could be solved by random discoveries are no longer considered the highest-grade nasties. There were a lot more intractably fatal conditions in 1870 than there are today.
So the likelihood of there being answers that could have been randomly discovered by medics with 1870 or 1920 levels of knowledge is tiny. At the same time, the sum of human knowledge has expanded so rapidly since then, it's not impossible for stuff to get missed.
Apparently you know many people that have died from cancer young, and this qualifies you to know how a terminally ill person should process that emotion.
You have zero qualification. How dare you imply that you know best for someone going through this.
Hopefully no one reading this is ever in that situation. But I'll defer to the individual who's facing the death count down to process it in their own way.
Your tone policing in offensive. Psychological and quality of life in end of life situations are valid and necessary considerations to include when talking about life threatening conditions.
I said nothing about how a terminally ill person should process anything. I stated what I have found to provide the best outcome when a person close to you has a terminal disease. If OP said 'my friend asked me to research...' I would have given a different response/no response.
But when OP makes it look like this is an initiative OP took upon themselves, for themselves, because they have lost too many friends, then yeah, I'm going to highlight that might not be the best possible position to come from if OP wants the best outcome for their friend. My response about outcomes it totally valid since OP asked for help with outcomes.
To give a practical example, grapefruit juice contains some compounds that inhibit CYP3A4, a metabolic enzyme that influences the metabolism and absorption of many drugs, which is why many prescriptions tell you not to drink it while taking a given medication.
This interaction was not discovered until 1989, and not reported until two years after that. So before 1991, a simple dietary intervention that affected like half of all drugs and that could in principle have been noticed by patient who felt bad after drinking a common household beverage, was bro science.
Which is not to say "and therefore just do whatever", but just to point out that there's plausibly a lot of low-hanging fruit still left if you can figure out where to pick it.
The problem is you can't figure out where to pick it; it's lost in a sea of superstitious noise.
Even if you could find this fruit easily, "a food that cures cancer when eaten" does not exist. That would surface in epidemiological studies very quickly.
I admire your optimism in epidemiology. In point of fact, though, we have a rough natural experiment in the form of a food that doesn't cure a disease, but rather makes half of all drugs worse. That's very valuable knowledge, and under ideal epistemic conditions it might have been discovered within a few years of organized drug discovery as such. Yet was not widely known until the 1990s. So that's a failed positive control, which suggests that our practical capabilities to detect these kinds of effects are limited. Understandably so, given that there is no general requirement for dietary logging in clinical trials.
That said, "a food that cures cancer when eaten" is not the bar for experimentation. More realistic might be something like "a dietary or behavioral protocol that, in some way, ameliorates this or that illness".
For organisms with our body plan, "a cure for cancer" is like talking about "a cure for defection". But clearly there's "stuff that is efficacious against particular instances of cancer", a lot of which we found through techniques like natural product screens, i.e. "just trying stuff", rather than via rational drug design.
It is indeed somewhat surprizing why it took so long to figure out grapefruit juice (and it was by accident during the study of the effects of coffee on a drug). Some of the early drugs that interacted with grapefruit juice where short-term agents like antibiotics, and others like channel blockers didnt have obvious detrimental toxicity though they might have had effects that were above the range of typical human variability. Powerful statins became household items a bit later, and all the cancer drugs were invented after this association was already known.
I think there is a lot of efficacy left on the table with modern studies, clinical trials, and drug development. Most of the work is looking for treatments that work for the majority of the population. If a treatment was effective than standard care for 10% of people, it would be discarded.
It is more economical to start over looking for something that works for 90% of people.
Drugs an treatments aren't evaluated and discarded when proven worthless. The bottleneck is the number of treatments in development, so they are discarded when something else has a better ROI.
I love that someone asks for advice. Even for individual experience because he is miserable and some people are basically like "Nah just die. It would be uNeThIcaL."
↑This. Stop. No. Don't go down the false hope path. It's cruel AF and puts off acceptance, wasting time that they can put to better use post acceptance.
Maybe let your friend explore what they want to do and you just give support. Celebrate what they celebrate and cry with them when they cry. Find(or better make) them some comfy/cute hats. If you want to research the things about the hospital, the procedures they are getting, the oncologists they are seeing, and drop re-affirming 'you are getting the best care'. They want to feel like they are getting good treatment. Not like 'if only they got something else they would have a better chance'. But reality is, they are getting the care they are going to getting. Hype the heck out of it, reassure them. Even if the care sucks, find something to hype. Ease the 'if only' burden/regret/fear on them, don't contribute to it with 'if only you could go see Joel Olsteen's prosparity preaching in person and he blessed you' or go see John of God in Brazil or something. If nothing else hype that the WHO ranked France in best overall healthcare. Leave out the 'in 2000'. 'Thank god we are in France, who the WHO ranked best in overall healthcare'. Find things for them to take comfort in.
Personally, if I were dying and someone kept saying fake nonsense like "you are getting the best care" I'd probably cut off contact with them, or at least wish they would stop. I'd know I'm getting mediocre care like everyone else, that's also part of accepting the reality of the situation. I'd know my doctor probably graduated at the bottom of his/her class or else he/she wouldn't be an authorized provider on an HMO- and he/she probably can't understand or doesn't read the latest medical research on his/her own. And that probably doesn't matter one bit, because the "best care" wouldn't work either.
I might also want them to share technical ideas they think might help, or at least I would tell them if I wanted them to or not. If you decide to experiment on yourself, you can still accept the reality of a terminal illness. For me, that would be part of ending my life with dignity- knowing I sincerely tried to understand and solve the problem my own, and share what I learned with others, just like I did in the rest of my life.
The best care is not necessarily the best bleeding-edge treatment.
Most medical jobs are only possible at all (without burning out and destroying the person doing them) through them mostly acting in accordance with best practice and training.
The ultra-rich don't have markedly better survival from nasties like GBM than the rest of us, unfortunately, so if better exists, it's not something money can buy.
And where some degree of survival can indeed be bought, the medical industry does at least have a solid record of scaling it out to the professional classes, even if the poor go without.
> The best care is not necessarily the best bleeding-edge treatment
It's mostly a conceptual thing for me. As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind.
For example- I do have a doctor that is a hacker/nerd/scientist that also teaches college biochem courses for fun on the side and he was about to prescribe me a medication, but then based on an offhand comment I had made, realized I've had a number of bad reactions to medications that he knew off the top of his head were metabolized by the same liver enzyme as this new medication. This guy keeps a book about drug metabolism biochemistry on his desk, and the cover is nearly worn off from use.
I most likely have a SNP in that enzyme, that would have given me another bad reaction. This is deep nerdy biochem knowledge he was not going to get from any official protocol that led to better and safer care. The biggest problem here is we like geeking out on this stuff so much, he almost forgets to actually treat me when I visit him.
I've had other doctors that even if I had noticed the potential P450 enzyme issue myself, would refuse to listen because they have a fundamentally non-technical mindset, combined with ego issues about being the expert- that are usually made worse not better if I mention that I have professional expertise and training on the underlying biology.
In truth, I'll admit it is both quite rare to get any real benefit, and legally risky for the doctor to deviate from guidelines based on direct knowledge or understanding.
> As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind.
I recognize your appeal to community here, and I reject it: this isn't the hacker/nerd/scientist mindset, this is just you inverting the appeal to authority. Hackers/scientists don't accept statements as facts because they come from authority, but they also don't reject statements as facts because they come from authority. Authority is not a basis for accepting OR rejecting facts--authority is completely irrelevant in the establishment of whether something is factual. The hacker/scientist mindset doesn't require that the person in front of you understand the reasoning/evidence behind the protocol--it only requires that there exists valid reasoning/evidence behind the protocol.
Notably, in this case, the vague "some authority" you refer to is generally an organization that has collected a lot of reasoning and evidence on which to base their official protocols. The general practitioner doesn't understand all that reasoning and evidence because they can't--the human body is way too complex for one person to synthesize all the data on all the various things that could go wrong and treatments. Your general practitioner is merely there to execute treatment accurately, not to understand the treatment. Executing the treatment accurately is bloody hard enough.
If you don't trust the authority to do the research and come up with effective protocols, that's one thing, but if you don't trust the guy in front of you to execute the protocol accurately, because they don't understand all the reasoning behind it, it's you that's being irrational. Basing your opinions in reasoning and evidence is good; rejecting protocols which have been reasoned and evidenced because of some weird variant of identity politics isn't good.
Ask yourself this: Do you really understand how an OTC allergy pill works? Do you trust yourself to administer one to yourself? Why doesn't your hacker/nerd/scientist mindset prevent you from trusting yourself to administer a pill, then?
You are completely misunderstanding me- I am not talking about rejecting things just because they come from an authority.
I fundamentally reject that experts can make universal medical protocols that can be blindly applied by ignorant practitioners without high rates of really bad outcomes. It is done to execute cheap commodity medicine at scale, but it will never compare to having medical care from someone with deep understanding and individual context.
These type of context-free ignorant protocols will frequently do things to patients that are wildly inappropriate and dangerous in a way that would be obvious to people that actually know what they are doing, but completely missed by the average doctor. For example, a patient with regular bloodwork where every single kidney function related lab result is on the very edge of the acceptable range, but they're all marked green by some official cutoff, so the doctor doesn't even notice the biological pattern being presented- and is blindsided when the patient comes back later on with serious nephropathy.
Even worse- intelligent people that understand the evidence and the biology will self select out of even participating in developing such protocols- because the whole concept is nonsense. So these protocols are themselves mostly ignorant and outdated, and not developed by competent people.
One cannot commodify technical knowledge into simple protocols, especially with something as complex and poorly understood as biology. The only time this is optimal is in something extremely routine with no impossible to anticipate exceptions, or in an emergency where there is no time for careful problem solving: e.g. as checklists are used in aviation. In medicine they are only appropriate for first aid type situations.
Yes, when I have a health problem I generally read the scientific literature and understand it before accepting any treatment, unless it is an emergency where I am unable to. I do understand the mechanism of action for most of the OTC drugs (or as much as is known of them), and I am much more reluctant to administer OTC drugs to myself than most people are. For example, I would not take a Benadryl unless I was having a serious allergic reaction, because of the known risks of anticholinergics. I have a decades of training and scientific research experience in studying and modeling the biological mechanisms of drugs, and have patented drugs that are in clinical trial.
The following quote sums up my opinion of medical protocols better than I can:
"Knowledge isn’t a commodity, especially not a fungible commodity, as the medical business sees it. Consciousness and culture are part of the life process. It is exactly the commoditization of medical knowledge that makes it dangerous, and generally stupid. Doctors buy their knowledge, and then resell it over and over; it’s valuable as a commodity, so its value has to be protected by the equivalent of a copyright, the system of laws establishing the profession. Without its special status, its worthlessness would be quickly demonstrated. When A.C. Guyton wrote his textbook of medical physiology (the most widely used text in the world) in the 1950s, it was trash; as it was studied and applied by generations of physicians, it was still trash. The most compliant patients who bought their treatment from the most authoritative, Guytonesque, doctors were buying their own disability and death.
Each time you learn something, your consciousness becomes something different, and the questions you ask will be different; you don’t know what the next appropriate question will be when you haven’t assimilated the earlier answers. Until you see something as the answer to an urgent question, you can’t see that it has any value. The unexpected can’t be a commodity. When people buy professional knowledge they get what they pay for, a commodity in a system that sustains ignorance."
-Ray Peat, PhD
If I let playing the lottery change how I interact with the world/prevent me from dealing with my situation, because I hope I will win, that 'hope' is a negative impact on my life.
If I encourage my friend who is down on their luck to buy lottery tickets so they can have hope, am I helping them, am I being kind?
"Hope is false if it is based on ignorance of the correct assessment of the probability that a desire is fulfilled or on ignorance with regard to the desirability of the object of desire. Hope is justified—realistic—when the hoping person knows and accepts experts’ judgement about the probability of hope fulfillment. However, I argued, what matters for evaluating a person’s hope is not only whether it is realistic, but also whether it is reasonable in light of the aim and goals for which the person strives in (the remainder of) his life
...a person’s hope that an (experimental) treatment may prolong his or her life or improve the quality of his or her life can only be called false when he or she thinks that the chances of personal benefits are greater than those estimated by experts. If he or she does accept their judgement, continuing to hope is realistic. Hope is moreover reasonable if it contributes to realizing what a person strives for in (the remainder of) his life" [1].
I agree that the probability of a desired outcome is valuable information. But to call being unaware of this information “false hope” is a blight on our language. Hope is hope. It’s quite proven that believing a certain outcome is likely increases the likelihood of that outcome.
> to call being unaware of this information “false hope” is a blight on our language
False hope is still a form of hope in the same way a red car is still a car.
And it’s useful to delineate it. Hope is rooted in expectation. When we watch a film about a fraudster, the dramatic irony arises from the audience knowing the rube is being played even while the rube is quite hopeful. We may conclude it’s better for the victim to live in false hope. But again, it’s useful to understand it’s a hope that’s false (and that someone is making that decision for them).
Hope is premised on the basis that nobody knows the future 100%.
Experts can give a mostly-frequentist analysis based on past medical cases.
The unknown part is whether those cases apply to yours.
And nobody knows.
All the so-called probability is meaningless. It matters not whether your chances of remission is "99%" or "1%". Those numbers are meaningless in a specific case under a specific situation.
I understand this is not the commonly understood notion of probability, but the common notion is simply wrong.
I'm not saying experts are wrong, I'm happy to assume that their analyses are quite correct when applied to a population. I'm just saying the common way of interpreting their statistics onto one specific case (the one you care about) is wrong, because you can't just plug the probability onto a single person/case and round it off to zero or one.
Errr. So your point is I should be reassuring my friend, by telling him he’s getting fantastic healthcare.
I don’t get it. My friend doesn’t need reassurance. He doesn’t need to take comfort in the fact that France has good healthcare. He’s going to die and he knows it.
I am here just because I want to tell him: if you want to try something crazy, and it may not work at all, there’s this. If you prefer not to, that’s fine too.
Yes, my point is you should be putting your friend with a terminal condition at ease so that they can skip wasting any energy on regretting their healthcare situation thinking they would have lived 'if only...', and you should help them enjoy/process/maximize their remaining time.
I get what you want and why you are here, I do. Been there done that for friends and family. I lost my mom, don't think I didn't try to find every treatment, and for me she did them all no matter the pain/loss in quality of life it inflicted on her. In the end watching Joel Olsteen gave my hippie/anti christian progressive mom comfort so guess what, anti-organized religion me sat and watched Joel friggen Olsteen with her as she accepted and processed her situation, while inside I screamed 'noooooooo, we can't accept this! NOOOOOOOOOOOOO! Mom no, I can't lose you, and our final time can't be spent watching Joel friggen Olsteen!'. And on that final day, when she was suffering in worse pain than I can Imagine, I put on a brave face and told here it was OK mom, she can go now, she can have peace now, while inside I screamed 'you can not goooo! The world will end if you go!!!! You can't leave me, ever'.
Do you really think anyone is saying 'you can go now' inside when they tell someone it's OK to go? Do you really think everyone thinks their local medical care is the absolutely best in the world when they say 'man, good thing you got Doctor X, good thing we have this facility'?
I think it is ok to seek some alternatives or "hacks" for some hard to diagnose chronic stuff like fatigue, as there are so many things that can cause this.
However, when you know you have certain disease there is nothing like talking to an expert in the field. Internet is filled with garbage and misinformation now. People selling snake oil.
HackerNews is also filled with people who think they know better than experts because they can write code.
I've seen a well regarded specials for a neurological issue I am having. She knows everything I've learned over the years and all about emerging research and treatments.
Suggested supplements I already knew about and meds. Also, said nothing is a silver bullet.
The current treatments ARE essential oils, and EVERY FUCKING ONE is recommending my friend he goes through chemo, radiation therapy and risky surgery, all of which are proved to be extremely debilitating, in the sake of following the standard protocol, with a potential reward of living some weeks more.
Meanwhile, it is proven that the Zika virus does kill GBM cells in humans. This is what causes microcephaly in newborns. Inoculating the Zika virus in a controlled environment yields zero risk, and has no side effects. Yet, no one will inject a Zika virus sample to a patient, because it is not protocol.
I have no idea why the random pub med articles aren’t reproduced. But what I know, is that maybe one of them is onto something. I was mostly wondering if anyone in the community had found it.
Remember than when the AIDS epidemic broke out. The doctors and labs didn’t help much. People took things in their own hands and tried stuff, and in the end, they found things that worked.
Sure it’s a moonshot. Why not try a moonshot? It’s stupid not to.
The ETH Zurich article I posted said something like “don’t try this at home, self medicating would be incalculable risk”, but is that a joke? Not trying anything leads to certain death.
I'm a researcher in the biosciences, and know how unlikely it is that these one-off and in-vitro findings are likely to work but I would 100% scour the literature and try experimental treatments on myself if I were in this situation. You've made a good start in looking at some interesting ideas, and there are a few more in the replies. At the very least, it might provide some information that would help someone else. I'm not sure how one would actually go about getting infected with zika.
I'd also try to come to terms with the fact that these are very unlikely to work, and focus on getting my life in order, according to my values and goals. I'd also re-read Epictetus.
However, I will also provide what you are asking for here: If you want an anti-authoritarian biohacker with radical but not stupid ideas - especially about treating cancer look at the late Ray Peat's blog. I've published well received academic papers inspired by his work. But avoid his online followers, they are idiots. Much of his specific ideas and suggestions are basically outdated, but his general attitude towards understanding biology and solving problems on your own is excellent.
However, if it were not me, I would not suggest anything unless they very seriously asked me to do so. I am very much into weird medical ideas and theories, have a biomedical PhD, and yet do not try to play doctor to my friends and family. Sometimes I will offer to share ideas if they want to hear them, but leave it at that.
"Since the contextuality of communication is always in the foreground when I talk or write, you know that someone is confusing me with an authority when they talk about my `protocol' for something. Context is everything, and it’s individual and empirical." —Ray Peat
I suspect you are removing so much nuance and context as to make a reasonable idea seem quite stupid. Do you have a reference to that specific claim?
His general approach is to figure out what biological systems are impaired in a particular health condition, and rationally think through the possible underlying bottlenecks and regulation - including things like the nutrient substrates for metabolism, and hormones that trade off metabolic energy between different systems.
At a philosophical level, he was generally opposed to any type of prescription or protocol that claims to "cure almost any[thing]" and emphasizes the need to understand the individual context and biology for a certain situation. He flat out refused to give any general health or diet protocols, and only said what he did for himself in very specific situations related to his own personal health problems- which ignorant people with no biological knowledge have inappropriately tried to translate into general prescriptions and diet protocols.
They're cargo culting his personal diet, etc. when really following his philosophy would involve deeply studying and understanding the biology with an open mind, and thinking of creative solutions on your own.
If one is treating him as an authority, and copying what he did or said personally, they are already entirely missing the point, and acting completely against his actual philosophy of problem solving. His goal was mostly to strip authoritarianism from medicine, and replace it with an orientation towards personal deep understanding and creative problem solving.
It is my belief that people are so conditioned to expect simple nonsense "universal protocols" from both mainstream and alternative medicine, they refuse to listen when his whole point is to get people out of that kind of thinking... and try to still extract them from whatever he says.
I sympathize with your situation and frustration. And yes, temozolomide and bevacizumab and whatever else they're giving your friend won't buy much time. Everyone knows that.
Part of the problem unfortunately is that glioblastoma, like many highly-aggressive cancers, is not a single disease but many. The cells mutate frequently, and each group of mutant cells (call them a "clone") is in business for itself to survive anything you throw at it. So something like your Vika virus idea, for instance, might have a 1 in a million chance of killing 99% of the cells, but the remaining 1% will be completely resistant and go on about their business. (Meanwhile, the virus is orders of magnitude more likely to cause more harm than good.)
Since you've known so many people who've had GBM, there may be value in investing in research that might help someone in the future. There are two broad moonshot approaches. First, the immune system is the central axis of cancer. Every cancer that grows and spreads is an example of the immune system failing to do its job (usually because the tumor has shut it down). If we can better understand how this happens, we can make pan-cancer drugs. They sort of already exist: one group is called immune checkpoint inhibitors. They basically unmask the tumor, allowing the immune system to identify it and take care of business. But they're only part of the solution, we obviously need more.
Another approach is further out there, and involves development of nanotechnology. Bacteria-sized machines small enough to get into cells could ideally be tailored to do pretty much whatever we want. This is a bit more of a long shot, but this is the sort of thing that would help solve the endless game of whack-a-mole that is cancer medicine today.
Your understanding how HIV/AIDS was treated successfully is completely wrong. HIV/AIDS was treated through an absolutely enormous amount of research and a careful negotiation between the scientfic community and the diseased community.
> Remember than when the AIDS epidemic broke out. The doctors and labs didn’t help much. People took things in their own hands and tried stuff, and in the end, they found things that worked.
What? how did people take things into their own hands?
>> Remember than when the AIDS epidemic broke out. The doctors and labs didn’t help much. People took things in their own hands and tried stuff, and in the end, they found things that worked.
What??? It was the FDA that blocked access, not doctors and labs. It was the doctors and labs that were trying to find treatments. Peptide T and AZT had several studies going on.
You're welcome. I read a lot about fasting and I have a lot of experience with it. It's helped me, personally, heal many things (but not all of them -- it's good to have low expectations.) In any case, it's a mind-expanding experience to go without food for a while, regardless of the outcome.
Please Google Thomas Seyfried and William Makis. The latter is controversial—if he’s not completely fraudulent and making things up, he might be onto something. He’s sharing emails from numerous cancer patients who claim to have healed using these two particular molecules.
Exercise can supposedly help outcomes for some types of cancer—-I wonder whether the mechanism is similar to that of fasting. The supposed mechanism AIUI is that exercise makes less glucose available to the tumor. Podcast with more info here: https://overcast.fm/+6j6rLbfGM
I'm one of those stubborn types that will refuse all medical treatments, lots of fasting is my current go to strategy if some tumor gets out of control.
steve jobs and many others tried things like that. if it makes you feel good then sure, but that alone will kill you faster when a tumor(s) gets out of control.
You should ask them if they want you playing doctor.
I have a chronic disease, not fatal, and totally manageable. But the most annoying thing is when someone finds out and suddenly pretends to be the expert.
Of course my doctors and I investigating it for years were completely wrong! I should’ve ate more apricots!
Please just check with them if they want their limited time spent like that.
dont get why that upsets you. I have had a chronic disease my whole life and one of the people who offered help completely saved my life.
If anyone else told me to eat apricots Id be grateful for their time and attention.
I would probably eat the apricots and tell them it was fantastic, even if it had no effect.
Sorry I just have rarely seen my friends or family offer any advice.
- Back to OP, Ive always remembered Paul Stamets recommending the stamets-7 mushroom blend with research papers talking about recession. no idea if it works.
Because this often sounds like people think you haven't tried (almost) everything yet and of course they might have a solution.
I think your and parent commenter's situation and reaction are polar though. One was in the situation where they receive an unwelcome advice all too often, the other one would like more attention but never got one.
Notice than you are prepared to do something you are not really iterested in and possibly don't even need - only to give some 3rd party a satisfaction as a "thank you" for their attention.
Well, it's not a taboo (at least I've read it as if the person is just tired of it).
But generally you can just ask something like "Will it be fine with you if you I share a piece of advice?"
This works even better if you tell why you think this might be relevant at all (for example if you have some expertise or have a very similar experience yourself).
The problem is that when you are trying to accept your fate and come to peace with it, and everyone else around you is trying to give you false hope. It's hard to break free from the constant futile wishful thinking if everyone around you is doing it for you.
Sometimes you should just let people work with their doctors and come to peace with their situation.
If I was dying of cancer, and someone told me to eat apricots, I might shove the apricots down their meddling throat.
It can be bit annoying because people people think "can't hurt to try" but there's thousand unfounded things to try, little time, no way to pick and some of them could hurt. There's no harm in listening to ideas, being expected to implement them is another thing.
a) Nobody here is talking about unfounded things nor demanding anyone do anything.
b) There are not thousands of things to try. In fact in most cases there will be no options since you will need to be in a clinical trial, asking a Doctor to try something unproven and unethical or need substantial resources.
a) Well founded things are roughly the things your doctor recommends. The rest is unfounded. Some unfounded things might really be worth trying if you have time and strength. Most aren't. Yet people who know you that mean well but have very limited capacity to evaluate what is worthwhile and what is not will firmly believe that the idea they are bringing you is the one that will cure your illness and the only hurdle is convincing you to apply it. That's what gets tiring.
b) In most cases there are just a few things or no things that actually might work. But there's thousands of ideas floating around of what people say might help. Ranging from "you must eat a spoonful of this spice daily" to "there's this small lab on the other site of the planet that make this expensive substance that will cure you but what they do isn't technically legal and might kill you".
I think the point here is that the OP was asking for moonshot suggestions...and people responded. Whether the person with the illness wants to hear these suggestions or not is between them and the OP. It is a sensitive area and people are all over the place in how they want to deal with it and its important to respect that.
> I would probably eat the apricots and tell them it was fantastic, even if it had no effect.
You might for the first. Maybe the second. Probably not for the fifth. Certainly not the tenth. You may be tempted to hit the fiftieth.
If everyone around you feels the need to help, and provides the same insights, because they're not experts, then they're providing you the same repeated insights that you encountered at the beginning of your journey. A journey you may already be decades into, and having the same information shoved down your throat, day after day after day.
There is a reason that "Have you tried yoga?" is a meme in the chronic illness groups. Yes, it may provide some limited help, like most exercise. But 3652 days of hearing about it, later? Your patience might not have lasted.
first: the person who doesn't want to be reminded is probably not the person that is approaching you and actively telling you that they are approaching the end of their life.
second: speaking to them about their plight isn't the struggle; DEATH IS -- and we're all in that same boat.
Telling people that you're terminally ill doesn't necessarily mean you're desperate to avoid death. It can be that you want to make the most of the time you have left, or ask for help with doing that, or need reassurances about protecting loved ones, a legacy, getting creative or scholarly work out into the world, or need help dealing with your fears/regrets or...many other things.
I don't get this existential fear of death many people have. Entropy is a fundamental fact fo existence. I think a lot of people are fer less concerned with dying as such than they are with minimizing the suffering, loss of autonomy, or inability to prepare that often precedes it.
Same boat with having a chronic illness, not fatal, but no cure either. It gets tiring wading thru all the snake oil salesmen selling false hope. And it isn’t them directly, because my older family members will hear about it with “have you tried…”
Did you mention apricots deliberately? Apricot pits were a huge, huge alternative medicine in the 1970s under the name Laetrile. Proponents said that Laetrile would cure cancer and was being covered up. The FDA banned it, saying that it accomplished nothing other than potential cyanide poisoning. Meanwhile, tens of thousands of patients a year went to Laetrile clinics in Mexico and spent tons of money on it. Laetrile was smuggled into the US from Mexico, second only to marijuana. Enthusiasm dwindled after studies failed to find a benefit. (Just some hopefully interesting history about apricots.)
I have a friend who is an MD, and he recently asked me what I’ve been doing to manage my seborrheic dermatitis. Since dermatologists have no cure for it, we often have to resort to anecdotal treatments. Moreover, big pharma doesn’t invest in studies for treatments they can’t patent. Blind trust in medical professionals isn’t necessarily wise. Anecdotal solutions still hold significant value, in my opinion
Although not from the cancer itself. He died of an opioid overdose. He was prescribed pain killers for cancer-related pain, and got hooked. His doctors stopped prescribing, so he found it elsewhere, and got a bad batch with fentanyl. (He was a VC living in SF, well to do, he had all the treatment money could buy, but cancer ended up not being what killed him)
I know this isn’t what you’re looking for, but be sure to not ignore other parts of his health. Addiction and other disorders are common among people with terminal or not-so-great prognosis.
I think that's a kind sentiment, but the counter arguments would be (1) they could very likely overdose and die, and (2) an addiction changes who you are, so it's not that "they" want it, it's the addiction that wants it. Your friend is the "they" before the addiction, and likely hates themselves after every time they fall off the wagon. To be clear we don't know the exact details, so we're speculating ; I could imagine some universe where it might make sense to let them, but in most cases I think what the real "they" would want is help breaking the addiction so they can spend their time doing the things that actually matter to them and give their life meaning.
That sounds incredibly patronizing. For some people, just being comfortable and happy for the remainder of their brief miserable life is meaning enough.
Responded to one of your sibling comments with more thoughts, but it could very well be what the patient themselves wanted -- help with breaking the addiction so they could instead spend their time doing things they care about.
> this is quite far away from the top entries in the list of worst ways to go
Genuine question: is it? I would have thought it's quite peaceful. Particularly since pentobarbital overdose is how we put down our pets [1]. (Not an opiate, but also renders you unconscious.)
It doesn't even matter whether this is painful for the body or not because you (as in your consciousness, your mind) are not there to witness the process and experience any physical feelings.
> doesn't even matter whether this is painful for the body or not because you (as in your consciousness, your mind) are not there to witness the process and experience any physical feelings
I believe we do, given that thousands or perhaps tens of thousands of people go into a controlled opioid coma every single day to spare experience of pain and suffering and then come back alive and well, me included. I'm talking about sedation of course.
I have heard some people having luck by switching to a ketogenic diet. Here’s a paper I could find on PubMed about this. Sorry to hear about your friend.
This. It is very dependent on the type of cancer. There is a lot of research on this. For a little context, I was a pediatric neurology professor for a while, and have been on a low carb diet for a decade. Much of the department did low carb, as did much of the oncology dept. Many kids with epilepsy are put on keto as well with great effect. I did a deep dive into low carb research before starting and keeping with the diet, and found a lot about using it for cancer therapy. I'm not sure what has changed in the last 10 years, but the above abstract looks promising. With a GBM, they probably don't have much to lose. *This is not medical advice, I'm not an MD (I was a BME doing epilepsy research), have them check with their Dr.
I wish I had something better to add, but I can add an anecdotal +1 to this.
A relative went keto pretty hard after a bad diagnosis and they are still going strong. As far as I understand it, cancer cells can only function on glucose.
+1 on this. I did my thesis on Glioblastoma-related imaging stuff [1]. The state of the art at the time (~2016) was that, realistically, none of the current treatments were "great", unfortunately. In short, you have 1) surgery, 2) chemotherapy, 3) radiation. Those treatments did extend survival in studies, but the overall survival of Glioblastoma patients was (tragically) still very bad at 12-24 months, and none of those therapy options were a cure.
As a side note, I recommend the book "Being Mortal" from Atul Gawande. The TLDR here is that our healthcare systems tend to overtreat patients, especially those with cancer who actually have a rather bleak prognosis, because it's easier for a physician to simply order all treatments and tell the patient "all good here, good luck" instead of taking the time to sit down and have a (long) conversation about the bleak prognosis and which options are actually still worth it. By "worth it" I mean that there are trade-offs to each treatment option, and it takes some very careful weighing whether each one provides a net benefit for your friend's individual situation. E.g. surgery might extend survival by X months, but might also create, worst case, new disabilities. So now you're faced with the very difficult decision of whether to potentially live for a shorter time with less disabilities, or for a longer time with more. There's no perfect answer, but having this sort of discussion is a good step which many patients unfortunately never take. I think this is a failure in our healthcare systems and maybe in the education of physicians.
Now, if I personally had a Glioblastoma, on top of the standard of care (surgery probably makes sense etc.), I think the ketogenic diet would currently be my best shot. Yeah, sure.. it's mostly only case reports so essentially anecdotal evidence, but it does look promising.
I'm pretty sure that's an old myth that sugar preferentially feeds cancer cells and that you somehow starve them by reducing sugar intake. After all, the body maintains stable blood glucose levels regardless of how low your sugar intake is.
"Reducing sugar intake" is not the same thing as ketosis. I have no strong opinions on whether it would work or not, but that's an article addressing something different and more clearly a misunderstanding.
All cancer treatments are probabilistic. There are no cures, just interventions that increase survival rates. There are no honest sentences that begin with "every cancer".
There is no diet that will even intervene with cancer, unless the patient dies.
Cancer is the patient's own cell that has mutated to a point beyond apoptosis and adapted to be able to draw nutrients from cells around it. It started from just one cell. It has already evaded dietary fluctuations and adapted.
EDIT: the reason I'm a spaz about this is I feel too many people focus on diet as the focus of cancer. While it might be good for some prevention, it will not stop it, and I want people to focus on real treatments.
I'm with you on this: Anyone that rejects clinically studied treatments in favor of "alternative" treatments is an idiot.
That said, the keto diet is being studied clinically and preliminary research does seem to indicate that it has an effect. So it may be an "in addition to" treatment. That said, the news isn't entirely good:
Are you sure about this? There is data to back it up in The China Study https://en.wikipedia.org/wiki/The_China_Study and mentioned in the Forks over Knives documentary. That's more about prevention, but it has a measurable impact on cancer rates, I don't see how that could be classified as no impact.
If diet stopped cancer, then the patients who eat less would see noticeable effect. This has never happened, except for maybe Otto Warburg, but even that is disputable[1].
I don't understand unreasonable positions like this.
Nobody is saying that people should stop "real" treatments or that diet must be the primary or sole focus for treatment. But given that a change of diet (a) costs nothing, (b) has no downsides, (c) potentially may work it seems strange not to do it.
Are keto diet/lifestyle changes/etc actually used by doctors for cancer treatment? Even if those were effective you can't expect cancer rates to go down until they get deployed massively
> Effect of fasting on cancer: A narrative review of scientific evidence
> Emerging evidence suggests that fasting could play a key role in cancer treatment by fostering conditions that limit cancer cells' adaptability, survival, and growth. Fasting could increase the effectiveness of cancer treatments and limit adverse events. Yet, we lack an integrated mechanistic model for how these two complicated systems interact, limiting our ability to understand, prevent, and treat cancer using fasting. Here, we review recent findings at the interface of oncology and fasting metabolism, with an emphasis on human clinical studies of intermittent fasting. We recommend combining prolonged periodic fasting with a standard conventional therapeutic approach to promote cancer-free survival, treatment efficacy and reduce side effects in cancer patients.
This paper you linked didn't solve anything. Please read it, and stop spreading misinformation:
>> However, patients may not tolerate such a CR diet for prolonged time. Therefore, as alternative, it has been proposed an intermittent fasting regimen, whose beneficial effects also appear promising though somehow controversial in preclinical settings. This will require further elucidation in controlled clinical trials.
Have you spoken to oncologists and cancer nutritionists? I have.
It seems there's some misunderstanding here. The paper doesn't claim to have solved the issue but highlights areas requiring further research, particularly controlled clinical trials to confirm the effects. Intermittent fasting is indeed a complex and debated topic, as preclinical findings often don't translate directly into clinical practice.
I appreciate that you've spoken to oncologists and cancer nutritionists—real-world expertise is invaluable in discussions like this. Could you share any insights or perspectives they provided? It could help clarify and enrich the conversation for everyone.https://pakrozee.pk/
You cannot stop cancer cells with diet alone. If you think otherwise, make your own clinical trial and publish results. I'm not spreading misinformation, instead, I'm challenging those who claim their diet can cure cancer. Copy-pasting internet links doesn't cure cancer either.
Along with other success stories, they helped my sister with a particularly lethal form breast cancer in one of their clinical trials.
Also - If your friend is approved and needs a place to stay, let me know. Know a couple of people who help house people who are getting treatment here.
You’re an amazing friend and I hope your friend gets the care they need
Google Richard Scolyer: Top doctor remains brain cancer-free after a year. A year after undergoing a world-first treatment for glioblastoma, Australian doctor Richard Scolyer remains cancer-free.
Scolyer is in the relatively fortunate position of being a world class cancer researcher before getting cancer, so he had the resources of an entire oncology lab to give himself a speculative treatment.
Best hope in this regard is to keep an eye out for a resulting clinical trial, unless you have access to a friendly cancer research lab that wants to replicate the experiment.
This is as complete a list as you’ll find, written in plain English, with citations for every part of it. Slightly out of date but there hasn’t been much that’s new and different since last year. Vorasidenib was approved recently in USA and it’s the most effective IDH inhibitor - worth reading more about.
The document is focussed on glioma but there’s a lot of GBM research. Unfortunately the short answer is that there is no cure and there is treatment that might be a cure under development. There are treatments that slow the course, and the patient’s doctors know all of them and they will recommend what’s best. This is an area of medicine that is hard for amateurs to learn about, and a neurooncologist has decades more training than their patients. The reality is this is a horrible disease that currently has no cure - and the treatments that work are all complex medicines prescribed by specialists.
I read about this guy last year, using melanoma approach (he is a melanoma specialist) for his GBM: https://www.theguardian.com/books/2024/nov/03/brainstorm-ric...
Of course n=1, but I find it interesting when there is this cross field way of thinking.
He’s gotten a lot of press attention and it’s great, but it’s not something new. The researchers who do GBM work are always looking at developments in the parallel tracks of other cancers. It’s not really the case that they haven’t looked at melanoma work. That’s sort of a news spin on the nature of this work. There’s always cross-pollination because the genetic underpinnings of cancers are almost always related. For example, IDH inhibitors (the most recent advancements for glioma patients) are relevant for several kinds of cancer, not just gliomas.
The occurrence of GBM is about 3 out of every 100,000 people. If you happen to know 4, is there some commonality? Do you all work together in the same industry? Do they all live in the same town?
My aunt is in her 70s and has 5 friends currently with cancer. My belief is that it's downstream effects from Covid wrecking people's immune systems and their ability to naturally fight cancer. Time will tell.
Bayes and Occam would suggest otherwise. If you're in your 70s in the US it's likely many people you know have cancer (unrelated to COVID). Especially now, given that detection is better than ever and more people are surviving longer with cancer.
Even more so, Probably 100% of the population over 70 has cancer in the sense of a clump of abnormal cell divison, just that for a lot of them it’s so slow growing or in a benign tumor that it doesn’t get discovered or treated.
They are never gonna realize, the spell is too strong, particularly here
If anybody with an open mind reads this: plasmid DNA contamination / insertional mutagenesis (use a source that hasn't been altered by the pharma industry for cover up)
Unfortunately this is true, and there’s no near-term treatment that might change this outcome. There’s some treatments for slowing it down but there’s no proof of anyone being cured by any experimental method. There’s great progress being made and thousands of people working on paths to a cure but we’re still early days for some diseases.
Personally knowing four people with GBM and not being an oncologist is exceptional and worrying. That feels like it should be raised to… someone. It is very possible something bad is happening and a commonality needs to be tracked down urgently.
It is indeed very strange, none of these people lived in the same place or got diagnosed at the same time (some 20 years ago). Most are fairly remote to me though... Like : a good friend's mom, or my wife's cousin's husband, etc.
I knew two people (one adult, one child) who lived in the same building and got diagnosed with leukemia (~14 per 100,000) shortly after each other, maybe within a few weeks.
It's anecdotal, of course, but I've always thought that there could have been a connection.
It could be birthday paradox, but it could potentially be enough to get someone to come check for contaminants.
Looks like benzene, some pesticides, and formaldehyde are the common workplace exposures that can trigger leukemia. But some of those can turn up near housing.
> benzene, some pesticides, and formaldehyde are the common workplace exposures that can trigger leukemia.
That rings a bell. I remember that someone mentioned a recent repainting of the building. The incident happened at least a decade ago, so I can't remember all details.
I just finished Silent Spring last fall and was shocked to learn they already knew DDT and other pesticides were causing leukemia back in 1960. I guess PR from the chemical companies is working, because I would have guessed 1979-1985.
I have had two friends get it, and neither made it. Another died of it, but it metastasized from their lung (Yeah, I have known a hell of a lot of people with cancer. Most have survived).
If you have known 4 people with the same cancer, they call that a "cluster," in the vernacular, and it might not be a bad idea to see if you can figure out where it comes from.
Here on Long Island, we have numerous breast cancer clusters. I am pretty cynical that people know the cause, but don't want to deal with it.
I had a serious non-cancerous tumor, back in '96, but managed to learn to walk and chew gum again, after a couple of months.
The key is whether or not it's operable. Mine was, none of my other friends were operable.
My dad lasted ten weeks after diagnosis. If I get it I'll put my ducks in a row and exit intentionally, rather than raging against the dying of the light. Fighting it is great if your friend is up for it, and it's a way for you to show your love. But listen carefully and don't force it.
My mother has “frozen” breast cancer for 15 years using oral bloodroot (Sanguinaria canadensis).
To give you the short version of the story about how it works for HER: taking bloodroot causes the cancer to shrink too small to take a biopsy, but not go into remission, and when she stops taking it per the doctors advice, it gets very large and they start talking about surgery.
Nobody really understands how it works and a lot of people claim it doesn’t work, but I think it’s probably similar to a low dose natural chemo.
I have seen it work unusually well with skin cancers (melanoma) as well using paste application (this is called black salve), so despite what the FDA claims, I think there’s something there, and there’s a few papers that agree.
Don’t put black salve on your head, it leaves a hole where the cancer comes out.
Although limited laboratory research indicates potential for sanguinarine to inhibit the growth of cancer cells, there are no supportive clinical studies, and its use is discouraged due to adverse effects and potential toxicity.
She also swears by a product (basically a huge B17 dose) called Cascading Revenol that a guy on an old set of CDs Phillip Day (“the Truth about Cancer”) recommended to take with blood root.
It advertises itself as a natural tumour growth inhibitor.
That spinning hat is pretty cool. When cells breath they create a byproduct (Reactive Oxygen Species) - all cells do this, they need to keep their ROS levels in check else the cell will die, but because cancer cells have messed up mitochondria, they don't do this correctly and typically end up with way more ROS. That hat agitates the cells so they produce more ROS, but because the cancer cells are almost at capacity, it overloads them and they die from ROS strangulation.
"For 4-hour treatment:
Reduced DIPG cells by >80%
Reduced GBM cells by >60%"
> That hat agitates the cells so they produce more ROS, but because the cancer cells are almost at capacity, it overloads them and they die from ROS strangulation.
If this is the understood mechanism and it has measurable results, why isn't this in widespread use?
Goodluck to you and your friend. I only know about PEMF and will read about sOMF. I bought an ICES-PEMF a few years ago just to try it out for my back pain and it did help in reducing it and healing it. It's small and battery operated and was designed as a wearable but you need to come up with your own way of holding it close to your body. https://www.youtube.com/watch?v=ZnGpibdAoic
Fuck ivermectin and fuck you for even suggesting it. It doesn't work on cancer, end of discussion. It works by paralyzing worms on ion channel that humans DON'T have.
Did you even read the links posted? The study for ivermectin states everything is speculation. So why is anyone challenging me when they didn't read the studies?
>> Unfortunately, there have been no reports of clinical trials of IVM as an anticancer drug. There are still some problems that need to be studied and resolved before IVM is used in the clinic.
The method of action of ivermectin is well known. Lots of articles state it works against COVID-19, but clinical trials have proven this to be false. Yet people still cling FOOLISHLY to that idea, and now creeping into cancer. But, it's GREAT against parasites!
>> What is important, ivermectin does not cross the blood-brain barrier, and therefore, does not affect mammals, including humans, in which GABA receptors are located mainly in the central nervous system. Nevertheless, accumulation of ivermectin in the human brain has been observed after administration of doses about 100 times higher than the recommended one.
I just now checked out my theory of switching to a keto diet - this appears to be terrible advice.
There appears to be some initial idea of using keto to control cancer [1]. My working theory is that cancer is a high-replication cell, and the ketogenic diet is anti-growth, increasing the probability of it outgrowing the resources available. It appears possible to starve them of glucose [2].
In reality, it appears the keto diet may encourage metastatis, by promoting BACH1 [3]. You may end up with weaker cancer spread around the body. It's extremely unclear if this is a better situation or not.
Thank you for this. I don't have your background but I have GBM and research it and yes agree there is a total bypass in your system for keto. Your body finds a way to get what it needs. Keto might buy some time before that takes effect but it is not a solution.
If you went the keto route, you may want to explore BACH1 inhibition. Study [3] acknowledges the effective role of keto in reducing or controlling tumor size, but with an associated increase in BACH1 expression appearing to account for the increased metastasis (in mice).
Apparently there are a couple small molecule inhibitors that inhibit BACH1 (see ChatGPT). Unfortunately, they seem to be still in the experimental or early clinical stages.
I'm not in the medical profession, I'm just a humble internet user. It's entirely possible you know more than me - I'm happy to hear other ideas.
> Keto might buy some time before that takes effect but it is not a solution.
It might still be a solution. The cancer may be spread out and easier for the body to effectively tackle. Also note that it may depend on type or location.
One thing that does seem clear is that if you do go the keto route, you would need to stick at it. If you purposefully break it down, it spreads, then you give it back the fuel, it would probably make the situation far worse by growing rapidly in multiple locations.
You would definitely need to stick with keto. I have actually heard a lot of good, small testimonials. Some of them are from science journals and just lack the patient size. However, I don't think it would really buy me survival just a little more time at best. My conclusion is it could be worth pursuing but with my limited time I am just not willing to make the sacrifice. Not without having a better sense that it would cure me. For that reason I will pursue some other alternate strategies such as the spinning magnets.
Have you read Thomas Seyfried's researches. he says it is possible to strangle cancer cells with keto diet + blocking glutamine. He calls that 'press-pulse strategy'
Disclaimer: am not a doctor + know nothing about this branch of medicine, but this fairly new drug cured one of my family member's (stage 2?) lung cancer that metastisized to brain: https://en.wikipedia.org/wiki/Osimertinib aka Tagrisso
My understanding is that it's a 3rd generation evolution of immune-system-boosting drugs that "teach your immune system to attack cancer".
I don't know how fundamentally different brain cancer that starts in the brain is vs lung cancer that moves to the brain, but maybe similar approaches are possible?
A few years ago, I came across the idea of autophagy. The idea is water fasting for at least 24 hours to trigger the self-destruction of cells.
Combined with keto diet, as some suggested, might be a starting point.
So sorry to hear about your friend. My mom had a breast cancer that spread to brain. At that time, the only medicines that worked were Tykerb and Xeloda, as these were the only ones that could travel to the brain. They had promising results for a few months, and the tumour shrank a lot and then started growing again.
Had a very close friend who passed away years ago from it. We tried various things, from apricot pits to a hat with electrodes attached to his head. Nothing worked.
He died about a year before John McCain died of the same. I regretted that we didn't try to do more, but, seeing that it took McCain in the same length of time did make me feel a little bit better (not that I was happy for McCain's death, but that his connections and world-class treatment made no meaningful difference in how long it prolonged his life versus that of my friend).
I'm not sure why all the hate. This is entirely up to your friend. If they want to spend their remaining time trying moonshots, then by all means do it, and blog the results online and share with others. Make it into something fun. It literally does only increase their chances of survival even if by some extremely small amount.
Otherwise, if they prefer to spend their time in other ways, support them in that.
"False hope" is kind of an oxymoron. Hope is never easy to have. Fortunately it's not required. You can accept death and still find enjoyment/distraction in self-experimentation.
There are immune system supporting mechanisms for particular immune system dysfunctions that tend to co-occur with cancer. A particularly interesting one is Low Dose Naltrexone which is super cheap and has practically no downsides.
If there is a case of even mild dysautonomia various meds like modafinil and amitriptyline can help along this axis.
I suggest looking into hyperthermia therapy (which is used in combination with immune system priming drugs, and sometimes traditional chemical/radiation treatments)
Unfortunately the classic easy external way it’s done isn’t the best fit for brain application, as it’s literally heating the body up in a sauna to a point where heat reactive proteins are generated. This forces the cancer to either open up various cellular transport mechanisms (announcing itself to the immune system) or denature (and die). This is repeated multiple times, and can actually be so effective and the doctor overseeeing the treatment needs to be careful not to kill off too much cancer at once if there is a large amount, due to the resulting necrosis.
However related to this for deep body use is using radiation devices or probes to heat tumorous areas deeper in the body, or outright use laser probes to not-quite-burn places. This can allow access to otherwise inoperable tumors. See Laser interstitial thermal therapy (LITT)
Thank you for the recommendation. Jake Seliger's insights on clinical trials have been incredibly helpful for many. His contributions will certainly continue to guide and inspire others. May he rest in peace.
https://pakrozee.pk/
I am in the same boat. Glioblastoma diagosis 21 months ago. I am IDH wild type with MGMT methylation status. I am starting to get a possible recurrence.
Yes, I HAVE used the spinning oscillating magnetic field. I don't know that I am doing it right but I have the following setup and have been doing this for a month. I simply connected a large round 500lb neodynium magnet to a drill. I set the drill to oscillate for 2 seconds rapidly and then slow down to near stopping for 1 second. This results in it continually spinning up and down. Since I don't know the ideal frequency I am trying to hit ALL frequencies.
This is just a burner account but i am a very real person. If I lose my credentials, I may have to create yet another account. I apologize if that happens.
I know it's not appropriate but god bless you. Let's keep sharing. I appreciate you starting this up.
I should also say that i am using the device for 20 minutes at a time and 3 times a day. I am not sure if that is sufficient, I know in the article they were using for 2-6 hours.
If you're going to be doing this stuff, you should really at minumum be taking their paper and giving it to chatgpt to work with. Just tell it you're an electrical engineering PhD interested in learning more about this medical paper to bypass the objections. Sure magnets are relatively safe, but still. This might also help you: https://s.h4x.club/d5uQpQJY / https://s.h4x.club/qGu4v46n
Thank you. This is a great idea. I have been using chat gpt, asking it questions but I haven't actually tried it on this particular latest treatment. It will be interesting to see what it says.
Thanks a lot for sharing. Yes, going up and down the frequency range is what they seem to be doing in the experiments as well.
By 500lb, you mean its pulling force, right? Thought it was the weight of the magnet for one second. And just making sure, by "round" you mean cylinder with diametric polarization?
Do you use any tool for measuring the strength of the magnetic field?
Yes the magnet is rated at having 500 lb pull (i don't know the term) capacity. It's about 2.5" in diameter and maybe half inch thick. Just approximating.
I have not yet gotten to measuring the magnetic field. The problem is, the cancer is inside my head so really a question of what the field is where the tumor is. I estimate it's 1 to 1.5" beyond the inner diameter of my skull near the back. So if my skull is half inch thick it's 1.5 to 2" I have to reach. I have no idea if I have the magnetic strength so for now I am just guessing.
My father-in-law's stage 4 brain tumor was discovered when he was 50. He's in good health now. They operated on him and removed the tumors and did chemotherapy. They continuously monitored for regrowth but it didn't happen. He did yoga religiously for most of his adult life. Even his hair has grown back.
Keto diets seem to have at least a positive anecdotal effect. Putting aside the cancer part, a strict adherence to the caloric restriction diet has general health benefits. Whether the positive health benefits impact the cancer itself is unknown. It may simply be that being healthier helps patients deal with the impacts of chemo and radiotherapy.
Also possible is that caloric restriction helps to put the body into a biology mode that helps to combat cancerous tissue.
There's no solid science behind any of this, but generally being healthier helps with any medical treatments.
You can ask him to try yogic and ayurvedic methods. AN excerpt from The Wellness Sense book (author: OM Swami) [0]:
>I've had patients successfully cure ulcers, cancers, migraines, obesity, hypertension, allergies, depression and many other ailments by following the principles I share with you in this book. I am not suggesting that Ayurveda is a panacea. No system of medicine is. But, when you combine the principles of Ayurveda with the yogic thought, you make a giant leap in your understanding of the human body and its wellbeing. In this book, I introduce you to a holistic system of health and wellness.
My goal is not to give you herbal remedies, because once again I don't wish to treat the symptoms. Besides, I'm not a medical professional but a meditation specialist and a tantric practitioner. There are plenty of Ayurvedic doctors out there you can consult for medicine. Having said that, chances are, once you adopt the principles and practices I am sharing here, you will not need to see a doctor again. For a healthy and a long life, the ancient yogic thought offers you one of the most insightful, complete and scientific perspectives.
I promise by the time you finish reading this book, you will look upon your body and your health in a new way. You will learn how to take care of it better, you will know how to lead a healthier life in our present world
Sorry to hear about your friend; awful for both of you.
Anything you can build or brew at home? About as good as chanting spells at the moon on alternate Tuesdays. And definitely do NOT go get infected with some virus, which will only create greater complications and misery.
The only real chance I'd see out there is to get into a trial of some of the new immunotherapy treatments [0]. These create custom profiles and turn the body's immune systems against the cancer and have had some stunning successes — talk about biohacking — these researchers are out there!
Of course these are still in development. There is a lot of research going on around Boston [1-5], Mayo Clinic [6], and other research hotbeds.
Locating teams researching therapies applicable to your friend's cancer type, and hacking your way into one of those trials would likely be one of your best hacks ever; I'd focus on that. Gather the info, find out what it takes to get into the trials, get your friend qualified...
Best of luck - I hope you can organize a great recovery for your friend!
Thanks a lot. I am in France though (should have said in the main text), and I don't think there's any fancy trial going on in France currently. Hopefully your comment can help someone else !
I don't know about trials in France, but this is definitely a very hot research topic globally. A quick search pulled in a bunch of institute names I recognize from over here in the US [0-3].
There are also some immunotherapies that are already approved for use and past the trial stage e.g., [4].
Be bold - keep hunting until you find YES. Good luck to your friend!
" The tumor had spread to his brain stem and was shortly expected to kill him. Muizelaar cut out as much of the tumor as possible. But before he replaced the “bone flap”—the section of skull that is removed to allow access to the brain—he soaked it for an hour in a solution teeming with Enterobacter aerogenes, a common fecal bacterium. Then he reattached it to Egan’s skull, using tiny metal plates and screws. Muizelaar hoped that inside Egan’s brain an infection was brewing."
The scientists did get penalised for it but as a hail mary it might be worth investigating. My best wishes for your friend.
I lost my brother to a glioblastoma. I think it’s a 70 pct mortality at 18 months. Best thing my brother did, against doctors orders, was to have some nice vacations w his kids. Those were such fond memories for the kids.
I am sorry for your friend.
Lost my wife to brain cancer (gb4). After sifting through the noise, here’s what works based on stat sig research as far as I know:
1. Radiation
2. Surgery, awake craniotomy to reduce loss of function
3. Temodar chemotherapy
4. Optune helmets
5. Monoclonal antibodies
6. Maybe high dose vitamin C (suspicious results)
If I knew then what I know now I would have focused on reducing stress in our lives as it felt like it accelerated the growth, perhaps due to a weakened immune system. Quality of life and joyful moments together is the best you can hope for. It brings you into awareness of the magic of life and each other. Focus on that — which is 100% in your control.
You may not like hearing this, but the best thing you can do for him is be a supportive friend and try to make him happy when you get the time to. You are not an expert on brain cancer. You will not become an expert on brain cancer before he dies. You know who is an expert on brain cancer? His oncologist. I know grief is hard and you're motivated by your love for the people in your life, but there isn't some cheap hack that will fix this. Trust the experts to do their job and for the love of god don't take cancer advice from strangers on the internet. In the meantime, love your family, love your friends, love your life, and try to make others happy.
His Oncologist is definitely an expert but is not allowed to practice unorthodox moonshot treatments or unproven "hacks" at the risk of loosing his license. This is a desperate situation, and there is no harm in trying something, anything. I am sure his friend doesn't want people around him to give up on him either.
re: #4, they seem to be quite different. The paper OP referenced is considerably more novel, paper [6] here is incremental improvement on existing technology (TTFields).
Telix https://telixpharma.com that is working on theraputics and diagnostics for gioblastomas (amongst other cancers).
The Australian of the Year (a quasi government annual position) was last year given to Professor Scoyler, who is a leading melanomia researcher. He was diagnosed with gioblastomas 2-3 years ago and was able to make himself a research subject for immunologic and other approaches to dealing with brain cancer.
My friend was diagnosed with gioblastoma 2 years ago, she is very much dependent on steroids and has exhausted the chemo/radio possibilities.
It sucks, but hopefully getting better.
Search out all of the possible trials and other potential cures.
I’m sorry you’re having to deal with your friend’s suffering. Unfortunately there’s no hack that will help with GBM in any meaningful way. The best thing you can hope for is that the pathologist made a mistake and it’s Astrocytoma rather than GBM.
I recently listened to this Diary of a CEO podcast episode [1] discussing the potential link between blood glucose from carbohydrate-heavy diets and cancer. It is an alternate metabolic theory of cancer, and the podcast guest claimed that fasting followed by a keto diet was showing early success as an intervention for cancer patients (as an addition, not a replacement, to existing standard of care). I have not seen the data nor do I know the sample size, but the discussion convinced me to rethink my carb intake.
Anecdotally, people cite high abv alcohol consumption for having a preserving effect on living body. I imagine it being like a variety of chemotherapy. By that I mean specifically not drinking a mixed drinks, but drinking nothing but straight vodka and water for a whole day or multiple, while maybe eating some pickles. It shifts body metabolism from sugars and fats to mostly alcohol and protein. It's not as tough as it sounds, given that, again anecdotally, many Slavic and Finnish people do so casually.
so sorry for your friend. I've wondered about the studies you linked as well as these from some previous links from HN you may or may not have already seen:
Q: What do you call alternative medicine that works? A: Medicine.
Seriously though, "bio hacks" are no different. If these things worked, it's very likely they'd just be normal practiced oncology. Oncology isn't a subfield of medicine where researchers are overly cautious about risks. The patient is practically guaranteed to die, so even if your research has a chance of killing the patient, that's an improvement.
It is far more likely that whatever shallow reading of the medical data you bring to the table is going to counterproductive than productive. I strongly suggest not meddling.
The author of this Ask HN is asking because conventional cancer medicine is not good enough. I think cancer dissidents say the screening programs for early treatment makes the doctors look better by increasing the number of non-fatal cases that are “diagnosed”. But most people who die after a certain age all have non-fatal tumors in their bodies…
> Q: What do you call alternative medicine that works? A: Medicine
Medicine that doesn’t work is grandfathered in to be called Medicine to. I don’t know how standard harmful treatments get retired from active use.
> I don’t know how standard harmful treatments get retired from active use.
So naturally, you've assumed they don't get retired? I assure you, they do: sometimes it takes longer than it should, but if there's evidence that a treatment is harmful, it eventually does fall out of practice. Very few leeches are used in medicine today, in case you haven't noticed.
The ProPublica story you linked was published in 2017, so I'm not hearing that this problem of treatment 8 years ago is still a problem today. It also doesn't make clear what evidence it has against stents. I found some studies from 2003/2004 that say they found insufficient evidence for stents preventing "mortality, acute myocardial infarction, or coronary artery bypass surgery". However, there was evidence for "substantial reductions in angiographic restenosis rates and the subsequent need for repeated PTCA".
Now setting aside the pause for a second. Don't look this up: do you even know what "angiographic restenosis" is? If not, why would you think you're qualified to have an opinion on this? Because you read an article in ProPublica, you think you're a cardiologist now?
And here's my big picture point: yes, you can find problems with the medical field. Doctors are humans, and they make mistakes. But the track record of doctors as compared to random quackery off the internet, is absolutely stellar. You're criticizing medicine without comparing it to anything. Some of your criticisms are valid areas we could improve on, but the alternative you're offering is much, much worse. People die from under-studied treatments all the time.
"Things that haven't been approved for general use yet" is not meaningfully different from alternative medicine. You've adopted the aesthetic of cyberpunk instead of crystals or tarot or whatever, but let's be clear: you're not approaching this any more scientifically.
Do you know how many kinds of brain cancer there are? Are you aware that different kinds of brain cancers work differently and require different treatments? The fact that you're asking for "bio hacks" for brain cancer without even mentioning what kind of brain cancer it is, shows you don't know enough of the background information to even ask the right question, let alone assess the answers. This is like, asking "How do I fix a car problem?" without specifying what the problem is.
Specialization exists in our society for a reason. Let the oncologists do their job.
I get it, you're smart and you want to help. I'm smart too, and as smart people we can muddle our way through a lot of lower-complexity specializations without actually being a specialist. But I'm telling you medicine, especially oncology, is not one of those things. People a lot smarter and a lot more knowledgeable than us have been trying to cure brain cancer for a very long time and the fact that it isn't cured shows it's not something you and I can muddle our way through with a conversation on Hacker News. It's far more likely that whatever harebrained idea you come up with will hasten your friend's death or increase their suffering before they die, than that it will improve anything.
I mean, among the things you're considering is infecting your friend with Zika virus. For fucks sake.
The text below the title says stage 4 GBM, that is the specific form of brain cancer. So that’s that…
I don’t deny that smart people are trying to cure cancer. And I don’t pretend to be above them.
My point mostly is that I am reading about promising technology in the medical literature that is not through the clinical trials yet. So it is not available to the general public.
What I know is that the current available treatments are generally not working well. I don’t think my friend will last more than 6 months.
So what I am asking the community is: has anyone DIYed any of the promising technology and obtained any results. Seems fairly reasonable in a life and death situation.
As a matter of fact, someone who has GBM has indeed done just that (see in the thread). Unfortunately his experiment just started, so I can’t know if it worked for him or not yet.
Regarding Zika, yes it looks like it could work. You may not be able to do this at scale. I don’t have a clue. But if it was me, I’d book my flight to Brazil on the day of the diagnosis. A lot of people got Zika, the world didn’t end.
I don’t understand why people can’t stomach the Zika idea. A ton of medical research involves infecting people with live viruses.
> The text below the title says stage 4 GBM, that is the specific form of brain cancer. So that’s that…
Which kind of GBM? You're aware there are different kinds, right?
> So what I am asking the community is: has anyone DIYed any of the promising technology and obtained any results. Seems fairly reasonable in a life and death situation.
> As a matter of fact, someone who has GBM has indeed done just that (see in the thread). Unfortunately his experiment just started, so I can’t know if it worked for him or not yet.
And if his GBM does go into remission, you still won't know if it worked for him.
In fact, no one has "indeed done just that". No one has obtained any results.
> I don’t understand why people can’t stomach the Zika idea. A ton of medical research involves infecting people with live viruses.
I can stomach infecting people with live viruses just fine.
What I can't stomach, is someone saying shit like: "Meanwhile, it is proven that the Zika virus does kill GBM cells in humans. This is what causes microcephaly in newborns. Inoculating the Zika virus in a controlled environment yields zero risk, and has no side effects."
Uh, that's not proven, and "zero risk" and "no side effects" is not a thing in medicine. I'm not aware of any treatment for anything that has "zero risk" and "no side effects", let alone some bleeding edge treatment with a virus that has barely been studied as an infection let alone as a treatment cancers. Even the studies you linked did not say what you claim here: that's you literally making shit up. You said that, it's a quote of you, and it was dangerously incorrect.
I think it's a pretty reasonable rule of thumb that if someone says someothing has "zero risks" and "no side effects", they should be ostracized from medical conversations. You simply do not know what you are talking about and should stop talking about it, because what you are saying endangers anyone who believes you.
And as I've reiterated a few times now: you do not have cancer, so whatever harebrained grasping at straws you would do if you had cancer is irrelevant. Your friend is the one with cancer, so maybe ask them what they want before inundating them with your irresponsible, unqualified medical advice.
I am sorry about your friend, I really am. But that's not an excuse for you to spread medical misinformation.
Ok, yes you're right : medical stuff never yields zero risk nor side effects, I should have been more nuanced. And yes, Zika infection probably doesn't cure GBM either. There. Happy?
Yet, there have been clinical trials where people have voluntarily been inoculated by a live zika virus shot to test if a Zika vaccine was working. So real doctors have done it before, and on people who were not going to die 6 months later.
So you can blame me all you want for suggesting this CrAzY IdEa, but you should also be pissed at those doctors who actually did it in clinical trials.
From my point of view the situation is:
1. There is a non-zero probability that the Zika virus aggressively attacks GBM cells, as suggested by a whole bunch of medical literature.
2. Current treatments are not working well and do induce extremely debilitating side effects.
3. There have been clinical trials where people have been voluntarily infected with Zika.
It seems to me that the logical conclusion is that we could try and cure GBM patient by infecting them with a live Zika virus, exactly the same way as we did to test the Zika vaccine.
But instead doctors say we should follow a protocol that we know doesn't work and is very heavy in terms of side effects. And people just keep dying really fast, without trying anything new.
It just pisses me off.
--
Re: my friend has cancer and not me. Is there anything I wrote that suggests I am forcing anything upon him? I haven't told him anything about the research I am looking into. You're just too angry for some reason...
Obvious caveat: You REALLY want to research this in-depth to see if there's any basis to it, but I recently came across the fact that Hymecromone(4-methylumbelliferone) is an inhibitor of Hyaluronic Acid synthesis, which is a part of extracellular matrix, and necessary for cell proliferation, that is currently being investigated for a large range of different cancers, with positive effects in most(mostly animal models and in vitro studies).
I first discovered it when searching for bladder cancer therapies[1][2]
A cursory search seems to say that HA does in fact play a role in GBM[3], and that 4MU appears to reduce GBM cell proliferation[4] though it looks at a different mechanism.
In fact, there seems to be a review of its potential for treating brain cancers specifically[5]
As far as I can tell, it's a commonly prescribed drug for bile acid related issues that rarely has any side effects or risks. It appears to be safe, and to improve outcomes across many types of cancers
Try fasting. Go 24 hours without food and little (water) or no drink. Do this once a month when you don't have cancer, and maybe more when you do. The theory behind it: Some cancers such as Chordoma are reliant on mTOR, which fasting inhibits or modulates. (This is also why Rapamycin is being researched for cancer treatment, though its mTOR effect is mild.) Theory part 2: tumors tend to have a lot of glycogen, which is unavailable when fasting. The body still needs it so it will pull some from tumors if necessary.
Most cancers are dependent on glucose as a fuel source, as they typically use 200× more than most other cells in the body.
If you can, convince your friend to go on a zero-carb, zero-sugar diet that even cuts out artificial sweeteners (as they can also screw with metabolism). Get them to try to hammer their A1C down to 3.0 or less for 3+ months, so they go into extended periods of ketosis. A continuous glucose monitor can help identify spikes, which can also be moderated with 2tbsp of vinegar before each meal.
Yes. I simply hope the commenter reflects and doesn’t use a gender next time if there is no evidence of gender. That’s simply it. In 2025 I don’t feel it is appropriate for a commenter to use the pronoun “him” when there is no evidence of gender, and there isn’t at the time of comment.
Who cares about the gender pronoun, it's just a commenter online. The content is why we are reading. The author could be male, female or a bot. Not important, not relevant.
Sequence the cancer. Get involved in clinical trials early.
There's no "biohacking" cancer without pharmatech. It mutates. You would need a two or three sided attack. There was a concept on causing the cancer to have an "extinction event" and I agree with that, due to how cancer mutates.
We're also missing tools to see how effective treatments are, on a day-to-day basis. This may be out of technological reach.
Also, keep in mind, the blood-brain barrier is difficult to deal with.
I do not know if this will work but search for Beata Halassy
University of Zagreb researcher Beata Halassy treated her breast cancer with an unproven virus-based therapy using viruses she cultivated in her own lab.
I can recommend Lenox Hill on Netflix if you or them have not already seen it, pretty interesting watching doctors operate on and care for GBM patients - https://www.netflix.com/title/80201728
I have to imagine those doctors are still there doing this, it's been their life's work.
I enjoyed the read even though I don't think juicing can cure cancer. They mentioned studies where cancer cells were shrinking after dripping different juices onto them. It's mostly about eating your fruits and vegetables. The dude survived cancer without going through your typical Chemo.
Ivermectin has been used by many doctors in the past year or so for many different kinds of cancers. Here's an overview of why IVM is a good re-purposed cancer treatment. https://pmc.ncbi.nlm.nih.gov/articles/PMC7505114/
is an Australian MD with glioblastoma whose treatment is immunotherapy;
he is blogging (on X for example) as it's ongoing, and has been doing very well.
20mg melatonin daily (perfectly safe for years, doesn't affect sleep patterns at this dose)
Depakote for seizures (instead of something else)
All I know that when those were stopped recurrence started. It was after 5 healthy years on those and nothing else. It was primary anaplastic grade 3 glioma.
Obviously get surgery, radiation and Temozolomide for initial treatment.
In that situation I would stop eating for a while but I would also not count on it working since I can’t really stand hope. Acceptance is the key for me. You can find a video called fasting for survival from a cardiologist called pradip jamnadas and see if it makes sense for you or your friend.
Dr.John Campbell on YouTube has video on ivem and fen ben cancer cure experiences. Very interesting. Take a look.One entitled fen ben for cancer? About a month ago.
Dr.John Campbell on YouTube has video on ivem and fen ben cancer cure experiences. Very interesting. Take a look.One entitled Fen ben for cancer ?About a month ago
Look into immunotherapy trials at hospitals like UCSF. They might have pre-existing conditions which would make them in-eligible however. In any case, try to spend as much time with them as possible; you won't regret anything when they pass.
> getting infected with the zika virus (probably the best thing to do IMO
Virology based methods don't last very long because the immune system adapts quickly. If you want to go down that route, make sure you have experts on hand.
He tried an experimental payload that contained two ADCs, one BRAF inhibitor and something else, maybe PD-1 inhibitor. Then he had surgery. Payload-heavy ADCs are the way forward against difficult cancers.
They're using weakened viruses. Virus use in cancer is nothing new, but an interesting field. I can see why pharma hesitates using it, viruses can mutate, too, similar to cancer.
https://pakrozee.pk/
I am currently getting treated for Folicular Lymphoma, so I've been looking into complementary treatments for myself.
I saw a video on youtube -- wait, here it is: https://www.youtube.com/watch?v=ikSlMlMFS7M -- from a medical journal former editor / writer guy who cured his throat cancer or maybe it was skin cancer, but he talked about both, with topical treatments using food grade hydrogen peroxide (h2o2). (I forgot the strength he used -- maybe 35%. But do not swallow this stuff -- very harmful to ingest, only apply it topically at specific points.) Anyway he was talking about brain tumors and how for some kinds there are no good treatment options and he conjectured that injecting these kind of brain tumors with the 35%(?) h2o2 could wipe them out. This is because most cancer cells are highly susceptible to h2o2 (way more than normal cells) A brain surgeon could do this using imaging guidance, etc.
Maybe you can find a surgeon who is already doing this type of treatment in a trial perhaps.
Three other options:
1. High dose vitamin C via IV. At very high doses, Vitamin C can wipe out cancer cells via multiple mechanisms. One of these is because VitC generates ozone in the cancer cells which destroys them in a similar method as if they had been dosed with h2o2.
2a. Get into ketosis via diet -- can selectively cause cancer cell death -- something to do with mitochondria metabolism changes in cancer cells. But, getting into ketosis is super difficult.
2b. Get into ketosis by supplementing with MCT (medium chain triglycerides) from coconut oil. The C8 component of this type of oil seems to have the strongest ketosis results. C8 MCT is processed by your liver and converted into ketones. Much easier than a keto diet.
3. Follow the Gerson therapy -- https://gerson.org/the-gerson-therapy/ -- lots of fresh pressed mostly veggie juices as the main component of the diet along with other things. This can also mimic a fast (another way to selectively kill cancer cells).
I'm doing 1, 2b, and starting to do 3 for myself. None of these are expensive and they are all very safe to do and you can do 2 and 3 at home.
I live near Chicago and I'm getting standard treatment at Illinois Cancer Specialists in Niles and the IVC treatments from Raden Wellness in Highwood. I'm working with an MD Oncologist and a Naturopathic Oncologist. So far so good!
Key findings:
Harmine treatment significantly suppressed the proliferation of U251-MG and U373-MG cells in a dose and time-dependent way. Mechanistically, harmine reduced the basal and EGF-enhanced the phosphorylation level of FAK and AKT. Moreover, harmine inhibited the cell viability of U251-MG and U373-MG cells by downregulating the phosphorylation of the FAK/AKT pathway. Besides, harmine significantly suppressed the migration of U251-MG cells by suppressing the expression of MMP2, MMP9 and VEGF. Subsequently, orthotopic xenograft models revealed that harmine treatment dramatically inhibited the growth of glioblastoma in vivo.
Significance:
In conclusion, these results suggest that harmine suppresses the proliferation and migration of U251-MG and U373-MG cells by inhibiting the FAK/AKT signaling pathway. Our findings elucidate harmine could be a promising drug for glioblastoma therapy.
3. Supplementation: keto diet, curcumin, sauna, and some Chinese traditional medicines all have good academic data that improves overall and progression free survival
Source: I am a rare disease dad and did a lot of research and put together a private research team as well.
They're using weakened viruses. Virus use in cancer is nothing new, but an interesting field. I can see why pharma hesitates using it, viruses can mutate, too, similar to cancer.
Not sure if applicable and how to get in. Afaik price is around 100k for a personalised vaccine but you have to give them vaccine candidates based based on DNA data. Maybe some local biotech uni could help with that.
I had a family member diagnosed with an aggressive cancer, and we were able to shock the doctors with their progress and recovery.
Our goal was to contribute as much as we could to the treatment effort, and so we focused on diet and rest.
Namely we removed all sugar and glutamine (animal products), and took care of all household tasks: cleaning, cooking, getting to appointments, etc.
Each cycle when we would get the blood test results we would add items to the diet to address any numbers that were falling.
For example, increasing iron, folate and b-complex rich foods like lentils to support platelet production.
There is a lot to be said about where chemo and radiation treatments are these days, and I am thankful for the medical interventions.
The drug treatment designed by the doctors, and our efforts at home, led to the tumor shrinking at such a rate that my family member is considered a statistical anomaly, and their blood protein markers are at below normal levels; down from 27x the normal level when we started treatment.
Identical story here. A family member followed the medication/diet/supplement protocol from that same book in conjunction with standard cancer treatment. When the surgeon took the tumor out, he was shocked that it had drastically reduced in size. Their blood markers "could not possibly be better" according to the surgeon. The surgeon said he had never seen a patient respond this positively in his career. The additional evidence-based protocols likely contributed to this result.
Even before beginning conventional treatment, the McLelland protocols reduced the cancer biomarkers. It's also worth noting that there is no universal protocol in the book. Each cancer has a different metabolism requiring a different approach.
There's a professor who argues that cancer cells are fermentation and ketogenic diet is one of the pathways. There are drugs to stop this kind of respiration as well.
People on Twitter regularly posts links to relevant PubMed articles.
Fasting puts your cells into a "clean out the junk" mode that is quite powerful for deleting stuff, including cancer. That is, rather that being passive, fasting is quite active and uniquely potent. I had a lump in my throat near my vocal chords that I was told was a standard response to acid reflux and was inoperable. It was there for 15 years and hurt whenever I would sing. I did a 20 day fast last summer and just happened to have it examined and photographed before and after. Before the fast it was there and after it was completely gone.
Starvation, Stress Resistance, and Cancer
Roberta Buono, Valter D. Longo
Dysregulated metabolism is one of the emerging hallmarks of cancer cells.
Differential stress resistance (DSR) and differential stress sensitization (DSS) responses are the mechanisms caused by fasting and fasting-mimicking diet (FMDs) to promote protection of normal cells and induce cancer cell death.
Fasting-dependent reduction in glucose and IGF-1 mediates part of the DSR and DSS effects.
Fasting and FMDs have the potential for applications in both cancer prevention and treatment.
____
Either Longo or another fasting researcher pointed out that you can make a level of chemotherapy where none of the rats that are not fasting live and where all of the rats that are fasting live. So fasting is a powerful alteration of cells that makes them tolerate chemotherapy much better.
You might want to contact Alan Goldhamer of TrueNorth Health Center. They have almost four decades of experience getting fantastic results by fasting people (about 20K so far), such as curing cancers, Lupus, Diabetes, etc. See https://youtu.be/42QAyVkAS_0?t=71 or this https://www.youtube.com/watch?v=xuebTcdLIKY
The below is from a friend of mine who an M.D. told me has read so much about biomedicine that "it's as if he went to graduate school":
For general information on fasting, I recommend reading or watching Dr. Jason Fung. He is a nephrologist from Canada. His book The Obesity Code (I have read it) is selling well, but you can get the same information by watching YouTube videos, which I preferred to his book. My favorite were his early lectures that are less flashy “The Aetiology of Obesity Part 1 of 6: A New Hope” https://www.youtube.com/watch?v=YpllomiDMX0 However, if a six hour graduate lecture series is more than you want to sign on for, any of the more recent videos at www.dietdoctor.com will provide the basics.
In addition to Dr. Fung, a number of doctors are publishing articles and videos about fasting and cancer:
Some of this is very biochemistry based and is just tons of detail saying “fasting and/or a ketogenic diet will fight cancer.” Spending the time to understand the biochemistry of the disease and visualizing what you want your body to do will help your body heal. While this sounds very touchy, feely and like voodoo medicine to a traditionally trained biochemist, the research is strong on the ability of the mental imagery to have a therapeutic benefit. (Again, I cite Dr. Rosenthal, neuroscientist, as a higher authority).
Beyond the obvious fact that wasting the last of your friend's life by pushing him to become a one-subject experiment from a random pubmed article is bad. HN is a tech nerd VC forum, and as a rule, nobody here knows anything about medicine. Even if there are one or two actual subject matter experts in this thread, you can't distinguish them from every idiot who thinks they are god's chosen genius because mommy got them an Apple II when they were kids.
If, and only if, he's interested himself, try to get him into a clinical trial; don't get Zika virus from who knows where for the love of God. You'll be a good friend to him during this time. Best of luck.
(4 vaguely related people getting the same aggressive brain tumor sounds worrying)
man, people are so stupid, loads and loads of people are saying that EMFs at close distance are kinda harmful, yet you get downvoted, precautionary principle is your best ally to avoid harm or worse, these technologies are new, and medicine/research moves slowly especially if lobbies by the biggest/wealthiest corps in the world are involved.
The state of the art in cancer treatment currently is personalized immunotherapies spearheaded by companies like BioNTech, etc.
Cancer should be viewed from a system wide perspective in my opinion rather than a location specific disease.
If you really want to get into biohacker territory, figure out how to sequence the tumor’s mutanome distribution and then generate a mRNA vaccine encoding the unique antigen markers of the tumor.
That’s basically what these biotech companies are doing[0]. If you need pointers on where to begin your research, BNT122 is a good place to start.
Good luck. Depending on how much money your friend has, you might be able to make something happen. Consider contacting biotech companies directly.
I've just read "Brainstorm" the recent biography by Richard Scolyer, the melanoma researcher who has survived 18 months, possibly due to a novel immunotherapy regime. It's worth a read, especially chapter 8, about his GBM treatment.
My takeaways:
* His treatment is an experiment. It's based on techniques regularly used in melanoma treatment, but which have not previously been used for brain cancers. Clinical trials are required to tell if the success to date is due to good luck or the treatment.
* There was/is a real chance of death due to complications, particularly brain swelling or damage to other organs, from the immunotherapy. There have been complications, including liver toxicity, but the book gives the impression that these have been managed.
* The drugs themselves are commercially available, the three immunotherapy drugs used (Anti-PD-1, Anti-CTLA-4, Anti-LAG-3) being "off the shelf" and the customised vaccine was manufactured by a US based company (not a research lab).
* A major barrier to someone else trying this treatment regime is finding a medical team willing to take the risk. That was probably the biggest reason Scolyer was able to access this treatment whereas others might struggle: he and his collaborator, Georgina Long, were able to convince others that it had a reasonable chance of working.
* The novel part of the treatment was delaying the usual brain surgery and steroids and not doing chemotherapy. Instead an immediate treatment was done with immunotherapty drugs, results showing that there was no "blood-brain barrier" that stopped them from working. After about 2 weeks, surgery was performed to remove the bulk of the tumour with minimal cutting into the healthy brain. Radiotherapy was then used, along with a continuing course of the immunotherapy and a course of a vaccine customised to the genetics of Scolyer's tumour.
* Planning is underway to run clinical trials, involving research institutes in Melbourne and the US and a pharmaceutical company, to test whether the results on Scolyer are reproducible.
Preprint of the publication:
"Neoadjuvant Triplet Immune Checkpoint Blockade in Newly Diagnosed Glioblastoma" (this is the paper that documents Scolyer's treatment and results to April 2024)
This is the bargaining phase of grief, where a person will seek to do whatever they can to change a fate. But when they find they can’t no matter how hard they try, they’ll just proceed to anger and then depression.
The paper was published in Nature *Scientific Reports*, not in Nature. Nature SR is a low-quality journal due to its very limited peer review (SR peer reviews only focus on scientific validity of a submitted paper, rather than its perceived importance, significance, or impact -- ie., they check if you followed proper scientific procedures, but won't check if what you're saying makes sense / fits with the rest of the scientific literature). It's a known dumping ground for papers that aren't good enough to be published in a real scientific journal, and it survives/thrives thanks to its association with the prestigious Nature journal.
Very much an anecdote, but when I was younger, I knew someone who attributed the remission of their (expected to be terminal) brain cancer to eating lots of bananas that were so green/unripe that they crunched. I searched for this just now, and it seems there may be some real science behind it, but it's hard to say without digging into it further.
Some things will stimulate the immune system for a little while and then taper off (prunella vulgaris, blue agave syrup, wasabi), whereas others are higher reliability (modified citrus pectin, ashwagandha, milk thistle, kefir/probiotics, food like coconuts, berries, pomegranates, mangoes, mushrooms, broccoli, cabbage, asparagus, etc).
There are harsher herbs/substances that work against cancer but damage your organs which should be avoided if possible (cat's claw, thunder god vine, aspirin, etc).
Other things to avoid include some b-vitamins like niacin/folate, amino acids like methionine/lysine/glutamine, potato chips, and other things that can help the cancer grow once it exists.
Also be sure to purify your air/water, air pollution will make the cancer grow a lot faster.
Don't bother, if you're in a position to do so, help them find a first-class brain surgeon. Get them into Sloan Kettering, Mayo, Duke or OHSU or whoever. Help them look for clinical trials to get chemo past the blood-brain barrier (I've heard some promising things in this area, though I'm not sure if it's being tested on humans yet). If they have a family that's taking care of them, offer to help them. Even just a grocery trip a week or something would be a massive help (obviously this depends on how close you are to them but you get the picture). Hell, offer to just hang out with your friend for a few hours so the family can get out and decompress for a bit if they need to.
Don't let them fall into the false hope of "I might have 5-10 more years". The person I knew fell into that and did absolutely nothing they wanted to do before they died because they were in denial and kept holding onto the expectation that they'd get better.
If they have money, every cockroach will come out of the woodwork trying to get a piece. Watch out for them if you can.
I know someone who got scammed out of a very substantial amount by a real brain surgeon in America(!!!), who referred them to a guy that sold a bogus device which he claimed would "destroy the tumor" (no FCC sticker on it and the entire thing was controlled by a Raspberry Pi when I disassembled it). Brain surgeon had a bunch of FDA complaints against them too and performed it in one of the poorest cities in the country, across the street from a burnt out apartment building. The local pharmacy had a constant police presence because of armed robberies for the drugs. These details scream sketch to normal people, but normal people aren't going to be dying of brain cancer in the foreseeable future. Desperate people will do crazy things if they think it offers some hope.
See the problem with this disease is that the general treatment is shit.
With two inoperable tumors the chances that chemo and radiation alone do anything more than giving him a week or two are zero.
So in that respect, going to a first-class brain surgeon is no less a moonshot than any other bio hacks I can find online.
You're just recommending the "most-accepted" moonshot.
> going to a first-class brain surgeon is no less a moonshot than any other bio hacks I can find online
American "physicians received significantly less intensive care than the general population" at the end of their lives [1]. (Canadian physicians "used both intensive and palliative care more than nonphysicians" [2].)
The lesson seems to be yes, go ahead and pursue your moonshots, but don't let that cloud the reality of the situation and don't let the moonshots debilitate what little time you have left.
[1] https://jamanetwork.com/journals/jama/fullarticle/2482318
[2] https://pmc.ncbi.nlm.nih.gov/articles/PMC6659139/
Agreed
I'm sorry about your friend! Really, it's friends, I think... It's not fair to them, but its exceptionally unfair to you too.
It'd admirable that you're trying to help, that's the kinda person that I want to be when I, eventually, grow up.
I do wanna suggest that in the middle of taking care of your friends, you don't forget to take care af yourself. I give this advice knowing I'd never follow it, so maybe I should say try to ignore yourself as little as possible.
The OP you replied to is right, and if you read it again, you'll notice his actual recommendation wasn't any kind of moonshot. If you still don't see it, remember that in addition to the person diagnosed with cancer, the stages of grief hit their friends and family too.
I'm sorry for how messed up the whole thing is dude, and hope you'll be ok.
Agreed. Maybe look into end of life LSD therapy (https://www.webmd.com/palliative-care/features/facing-death-...) and work on the bucket list. That should be priority #1. #2 can be to try a lot of "out there stuff", but don't forget to live.
End of life bucket lists are a strange thing, I recall a close family member who entered hospice. They kept attempting to use their credit card to pay for all expenses, dinners, etc.
Of course, everyone around wanted to contribute - this person was not well off, the credit card was not used for much.
It took some weeks later after they passed for me to realize that they knew it was a credit card bill they would never need to pay. In all likelihood others contributions simply blocked them from feeling that they were contributing.
Lsd works in the sense that it makes you not care about dying that much, the ego death helps.
Combine that with ketamine for a nice anti depressant effect and you got a really good party going.
Why not do mdma also to kill the ptsd, maybe a visit a psytance festival instead of the hospital?
Jokes aside, its sad to prepare for death. I think drugs are not the answer, but they can help too. Depends on the people. Maybe hallucinogens trigger mental illness too. I dont recommend anyone to take drugs.
It's not "drugs", it's science and therapy. Huge difference. And yeah, fun fact: both ketamine and mdma are also used in therapies and are researched for decades now.
Not like they have much to lose
Hallucinogenic drugs can cause very disturbing thoughts and visions. One may be left feeling afraid and insecure after taking them, losing any progress one has made toward acceptance of death.
That’s probably why the suggestion was to look into psychedelic therapy, which utilizes a trained and experienced therapist in a controlled environment, rather than to hand their friend a strip of blotter.
I know when someone’s faced with certain death they’ll do almost anything they can to survive if only for a little bit longer, but this thread full of personal antectodes and largely non-reproduced effects from random pubmed articles is the hackernews equivalent of essential oils or smth
OP is explicitly asking for hacks and "out there" solutions, I think this is a reasonable place to post anecdata, papers, personal theories, etc. as long as people state their confidence level and link to sources when possible
> OP is explicitly asking for hacks and "out there" solutions, I think this is a reasonable place to post anecdata, papers, personal theories, etc. as long as people state their confidence level and link to sources when possible
As long as OP and their friend know this is spinning wheels for fun and is pretty much certainly not going to extend their lifespan, sure. There can be satisfcation in knowing you never truly came--nor will ever come--to terms with death.
The post reads a bit like one of those stackoverflow questions seeking a solution to x when that’s not the problem they should be solving.
> post reads a bit like one of those stackoverflow questions seeking a solution to x when that’s not the problem they should be solving
Sort of. They're looking to be a good friend and assuage perceived helplessness in the face of a repeat foe. )=(From a clinical perspective, the most-useful observation in the thread may be the unusual frequency with which this person has seen GBM.)
More broadly, we tell the stories of Sancho following Don Quixote through windmills, or Sam following Frodo to Mordor, because loyalty over reality is itself a reality of humanity. Like Sancho or Sam, our role in that journey is less to weigh its merits and more to keep our hero from cliffs. That, however, means the person playing that role has to see clearly.
As someone who nearly died a little over two years ago from cancer... It's irresponsible.
Point to the experts, but don't cause further pain through at best, false hope, and at worst, a murderous experience for your last few days.
Lots of people want to help. That leads to questions like this. You're desperate to help someone who is suffering. But you will absolutely make that suffering worse if you act through ignorance.
As someone with a mother, stepfather and multiple extended family members who've survived cancer thanks to modern medical science, all I can say is hopefully their friend at least asked before OP went out looking for these harebrained schemes.
I disagree. OP is just asking for medical misinformation, and it would be irresponsible to provide it.
Self-assessed confidence levels are basically useless because the most confident people are generally the most ignorant. It's causal: ignorance causes people to be confident. The more you know, the more you realize how little you know.
OP is asking for lesser-known possible treatments/trials/diets/whatever for a friend who is probably weeks to months from death. And your contribution is to stop people from helping them because of something about what now?
Because it’s actively harmful.
> And your contribution is to stop people from helping them
No. In the vast majority of cases, answering this question as intended isn't helping them, it's actively harming them.
> because of something about what now
You're responding to a post which explains this. If you understood the post, faking confusion is dishonest. If you didn't understand the post, you weren't qualified to disagree with it.
This removes so much agency from the people involved. If I were dying of cancer and asked for "out there" solutions, I wouldn't want people hand-wringing about whether it's morally ok to share unconfirmed theories.
Gimme everything you got at all levels of certainty, and let me decide what I want to try and not try. If I decide I don't want to try anything, or none of the suggestions have enough evidence to be worth trying and I'd rather travel around the world and skydive with my wife the last few months, that's ok too!
But none of us can pretend to know what they're actually going through, we can only offer what it asked and let them decide.
> This removes so much agency from the people involved.
No. Filling people's minds with garbage non-information does not empower them. Knowledge is power. Random bullshit ideas isn't.
> If I were dying of cancer and asked for "out there" solutions,
OP isn't dying of cancer, and as far as I can tell, their friend who is dying of cancer did not ask for solutions of any kind.
You're trying to appeal to empathy here, but as far as I can tell, the person you're asking me to empathize with doesn't exist. There is no person dying of cancer asking for Hacker News' unqualified medical advice that I'm aware of.
The vast majority of people do not share the "move fast and break things" mentality--this is actually one of the main reasons people dislike corporate culture. This is especially true with medicine. Leave the poor cancer patient alone.
> Gimme everything you got at all levels of certainty, and let me decide what I want to try and not try. If I decide I don't want to try anything, or none of the suggestions have enough evidence to be worth trying and I'd rather travel around the world and skydive with my wife the last few months, that's ok too!
Agency isn't that easy. There are myriads of advertisers and propagandists out there trying to spin a narrative, and a lot of the hare-brained ideas out there exist because someone is trying to manipulate you--to buy a product, vote for a person, etc. These people are good at what they do, and even if you catch on to a few of them and dodge their bad ideas, a lot of them are going to worm into your brain and get you to do something they want you to do. Let me reitrate: what they want you to do, not what you, at a fundamental level, want to do. That's not agency, that's you being manipulated.
There is not a shortage of information, there is a shortage of effective filters of information that separate out the truth. Humans simply are not capable of sifting through all the garbage ideas out there, and that includes you (and me!). If you open yourself up to the full stream of garbage ideas, that doesn't give you agency, that gives your agency away to the advertiser or propagandist who happens to trigger your biases most effectively. You're not doing what you want, you're doing what they've manipulated you to want.
> But none of us can pretend to know what they're actually going through, we can only offer what it asked and let them decide.
Believe it or not, OP is not the only person to have a friend dying of cancer.
A friend of mine in college was diagnosed with lymphoma late in his sophomore year and died about a year after graduation. In his last years he became increasingly hostile to the well-intentioned people who kept offering genuinely stupid ideas for how he could cure his cancer. It isn't fun for cancer patients to have to politely listen to this particularly unhealthy way of coping with their death while they are trying to cope with their own death.
Reading other accounts of people with cancer, this is a pretty common complaint.
> Knowledge is power. Random bullshit ideas isn't.
Every proven idea started as a random bullshit idea. No one in this thread is presenting their ideas as definitive solutions as far as I see, everyone is being pretty good about providing their confidence levels and sources.
> what they want you to do, not what you, at a fundamental level, want to do
This is a whole philosophical rabbit hole about advertising and free will in general, it's not specific to OP's case so I don't really want to get into it, that discussion is better had on Reddit or some other HN thread.
As for the rest, I think this other commenter said it better than I can: https://news.ycombinator.com/item?id=42657251
> Every proven idea started as a random bullshit idea.
No, actually, almost no proven ideas start this way. Ideas which ultimately solve problems in a complex field, generally require a great deal of expertise to discover. Penicillin was discovered by doctors, insulin was discovered by doctors.
We all love the myth of an outsider who revolutionizes a field they were excluded from, but the reality is that someone like Florence Nightingale was excluded from medicine because of her gender, not because of her lack of subject expertise. The people who make groundbreaking discoveries in a field are almost universally experts in that field.
Sure, maybe in some new field that's in its infancy, a random person has a chance of discovering something useful, but oncology isn't that--we've got centuries of study of cancers.
Really? Let's look:
> No one in this thread is presenting their ideas as definitive solutions as far as I see, everyone is being pretty good about providing their confidence levels and sources.
Really? Let's take a look:
1. "Meanwhile, it is proven that the Zika virus does kill GBM cells in humans. This is what causes microcephaly in newborns. Inoculating the Zika virus in a controlled environment yields zero risk, and has no side effects." Poster gives sources, but the sources don't say what he claims they say, because you know, randos of the internet aren't actually capable of reading medical studies.
2. "To give you the short version of the story about how it works for HER: taking bloodroot causes the cancer to shrink too small to take a biopsy, but not go into remission, and when she stops taking it per the doctors advice, it gets very large and they start talking about surgery." Seems pretty confident that there's a causal relationship between the remission and his mom poisoning herself. Luckily another poster posted this: https://jakeseliger.com/2024/07/29/more-isnt-always-better-d...
3. "Have you looked into ivermectin and fenbendazole?" Later, when criticized, user posts: "The linked study claims it has potential." User provides two linked studies. Both links DO NOT claim it has potential, because, you know, randos on the internet are not capable of reading medical studies.
Let me be clear: the confidence level of a non-oncologist in an oncological solution is worth about as much as what I flushed down the toilet this morning. These aren't confidence levels, they're arrogance levels of people thinking they know things they don't. And contrary to your claim, there are a lot of pretty "confident" people posting here about things they should have a great deal less confidence about.
> As for the rest, I think this other commenter said it better than I can:
> I'm not sure why all the hate.
The hate has been thoroughly explained, but your linked poster isn't any more capable of reading Hacker News posts than they are of reading medical journals, apparently.
My impression formed from my time in cancer drug discovery is that bro science is, within practical bounds, a perfectly reasonable option for one arm of a comprehensive plan for treatment.
A lot of things that sound like bro science are actually broadly supported in the literature. But studying this stuff is hard because of all of the usual issues with human subjects, the less than complete reliability of our epistemic institutions, and the infeasibility of running enough trials to address every indication in every subcohort. So if anecdata supports some intervention that that isn't aggressively inconsistent with basic theory, won't make you miserable for what might be the rest of your life, and which you could try with the sober understanding that your One Weird Trick might not work, why not?
If nothing else, a well-documented case study with good adherence tells us of one more thing that didn't work, which is hardly the worst parting gift to the world.
Every single person I know who died from cancer young went down this route, from trying weird cures to going and seeing John of God in Brazil. Zero cured or delayed the cancer. All delayed acceptance and GREATLY regretted wasting that time and wishing they had had more time in the acceptance phase not the 'this can't be real' 'I can't die' 'There has to be something' denial.
This can and does hurt them, and is cruel. If they want to inflict in upon themselves, that is one thing. But to do it because OP has had enough losing friends is selfish. You will never stop losing friends to death, in fact, it will only accelerate from here on out. It will never get easy. In fact, it compounds as more and more joy/light/goodness leaves the world and those you turned to for support are gone. It's part of the deal they made when our parents volunteered us for this existence.
My own view is not that self-experimentation is an appropriate, let alone likely efficacious, substitute for reconciliation to the idea of one's death. I certainly don't endorse interference in others' treatment, however well-intentioned. If you want to say: "you shouldn't treat your terminal illness like a science fair project unless you possess extreme sang froid and are precommitted to the acceptance of your death", I'd find that totally reasonable.
But my own view is rather that institutional epistemology is somewhat overrated, and self-experimentation somewhat underrated, relative to the conventional wisdom. (Though some people go too far in this direction.) This leads to general overconfidence in epistemic efficient market hypothesis arguments ("if a protocol were worthwhile, someone would have found it already") and underconfidence in the value of crowd-sourcing trying a bunch of stuff and writing it down. This view was principally informed by developing cancer drugs for a living and coming to appreciate that it's really hard, your knowledge of what's going on during a clinical trial is highly abstracted, and you can't be everywhere at once. It was secondarily informed by watching people do bro science on certain important questions and making interesting progress in large part because they could move much faster than academic or corporate research.
If we recast the point of contention as: "what is the largest effect size that could be found by an institution outside of academia or industry?", my position is that it's plausibly non-zero.
I'm sorry for your friends and I hope they found peace.
As a pure numbers game, I’d find it more surprising if “broscience” never found a result:
- a lot of terminal patients are prone to experimenting
- their overall number probably eclipses the total number of trial patients in a given year by at least one order of magnitude and I’d believe two or three
- they don’t have institutional barriers to what they can try, eg, they’ll fund non-patentable treatments
- a lot of their approaches are taking things from published papers and trying to recreate similar effects (eg, calorie control [1])
That they’ve stumbled across at least one treatment that solved at least one case for at least one patient seems likely. Isolating that from incorrect null results is where the epistemological struggle is. And there’s a good chance that it won’t help you with your particular case.
But what’s the harm in trying? — you’re probably going to die anyway.
[1] - https://pmc.ncbi.nlm.nih.gov/articles/PMC8749320/
When you try someone else's "broscience", you're not really experimenting with the unknown, so it's unlikely you're going to stumble into a "result". They know it doesn't work. If it did work, they'd have patented it and licensed it to Merck or Pfizer.
Choosing quackery is not experimenting.
Elsewhere in the thread I argue why efficient market hypothesis arguments are unlikely to fully apply in this case.
I think your argument is that developing cancer treatments is really hard and the clinical trial process has problems. I can believe it. Do you think the mainstream epistemological process produces more false negatives or more false positives? What's the proportion of cases where a chemist finds a compound that really works, but the process incorrectly rules it out, vs cases where something that doesn't really do much still comes out the other end as a marketable drug?
I'm not in the industry, so what do I know? But I kind of doubt there are actual, effective treatments just sitting there unmonetized in Merck's basement library because the company is slow and the process makes things difficult. Especially the kinds of things that get mentioned in HN threads that don't require any chemistry research and are pretty straightforward to test, like fasting, meditation and yoga.
TBC I have no reason to believe that Big Pharma is deliberately withholding effective treatments it knows about so much as making (understandable) decisions not to investigate them in the first place. The total addressable market of a potential therapy is a central consideration for target selection-- you're roughly trying to maximize patient population times marginal willingness to pay over the standard of care. I don't think there's anything nefarious about this btw, you have to do what makes the greatest difference.
But that does mean that if you have a hyper-specific rare disease, the person who is willing to spend the most time thinking about it may very well be you. Or if you're living far from a major hospital and getting treated by a generalist with a heavy case load, you might be the most invested person within 500 miles of you, which is almost the same thing but better because you can still read the literature.
I wouldn't encourage the average patient to try doing rational drug design in their garage, but one could ask: "are there things that look promising that are still a year out from clinical trials?" and think about how to DIY some approximation to that.
At the extreme end of this spectrum, you have people like Beata Halassy who did just that, treating her own cancer with DIY viral therapy (https://www.nature.com/articles/d41586-024-03647-0, and please do note all the finger-wagging about how terrible and irresponsible of her it was to save her own life). Why did she have to do that instead of just going to a doctor? Because the route to the clinic is too slow. Why is the route to the clinic too slow? Because FDA has the institutional incentives that it's better that ten thousand patients die for lack of a cure than one die of quackery. Why's that? Because the FDA gets penalized for bad treatments but not for treatments that don't exist. But I say that dying of lack of a cure is not much better than dying of quackery, so we might as well minimize total deaths.
At the somewhat less extreme end, you have ideas like trying to treat GBM with Zika virus, which has a sketch of a mechanistic explanation and some support in animal models, but afaict no clinical trials yet (https://clinicaltrials.gov/search?cond=GBM&intr=Zika). Is this a cure for GBM? Complete BS? Something in between? I have no idea, which is kind of my point-- no one knows yet. Regulators probably aren't that jazzed about signing off on giving neurotropic viruses to immunocompromised patients without a lot of prior evidence that will give them cover for making that call if something goes wrong (which it totally might!). But an individual patient might look at that question with a different set of incentives.
Or consider psychiatric treatment of various mental illnesses. The best and most honest psychs I know will tell you that, past a certain point, responsiveness to a given drug is idiosyncratic and the state of the art is really just "try a bunch of stuff until something works", without much concern for hypotheses about underlying mechanisms. Is that rational medicine or bro science? Something in between, I think. And is it possible that there are behavioral protocols that help one particular schizophrenia patient to manage their quality of life better than the standard of care as defined for the entire population? Given that no one really agrees about what schizophrenia even is, this seems not totally impossible.
And then at the other end of the spectrum you basically have lifestyle interventions, as you note. Almost everyone agrees that certain of these are good for you, but some are really difficult to implement and adhere to. It seems reasonable to self-experiment with those things.
If this was the case there would be facilities in remote countries with lax law making billions off of curing cancer. While there are indeed facilities in countries with lax laws doing questionable medicine, none are known for actually working. Instead they are known for preying on people. The fact that successful facilities don't exist indicates to me that your hypothesis is incorrect.
As I’ve pointed out elsewhere, I don’t think curing cancer is the bar for sober self-experimentation. “Noticeable amelioration of disease” is.
There is substantial regulatory burden that prevents US-based companies from doing what you suggest. In fact there is regulatory burden that prevents things that 99% of American voters would prefer, like having reciprocity agreements that allow you to take any drug that had already been approved in Europe. It’s instructive to look at the case of Halassy and notice how much reflexive resistance there is to even the most self-evidently good ideas.
To make things concrete, here’s a practical idea: write down everything you eat while on a medication and rate your subjective well being everyday. Look for patterns. If anything jumps out at you, try eliminating it and seeing if your subjective wellbeing improves. Is this method fool-proof and without failure modes? Of course not. Is the prior probability that you’re eating at least one thing that’s unknowingly contraindicated for your condition / treatment pair very low? Also no.
My model is that the rate limiting factor for spotting unknown contraindications mostly just individual attention / discipline, so EMH arguments are unresponsive to this factor.
Consider the following argument: if obesity were such a big health problem, why is everyone fat? Mostly because losing weight is really hard, which I sympathize with but don’t take as an indication that it’s impossible to do anything about it.
In fact we don’t even have to bring disease into it at all. I’m sure that if i did a systematic elimination diet i would find one or two common foods that really didn’t agree with me, which i could make noticeable differences in QoL by avoiding. Why don’t I? Mostly because I’m just too lazy, and I’m fine with copping to that. But i don’t think it’s crazy for someone to choose otherwise, especially if they had a higher upside.
True. But for the highest-grade nasties, where median life expectancy is unfortunately short and progression near-universal, you don't need much signal to get above the noise.
Anyone surviving more than a handful of years with something like that is an outlier such as to merit a full work-back, and at that point it's no longer bro science.
Conversely, those are also the least likely to be solved by random trial and error.
Those people largely just die, no matter what you do — that’s what makes it a “highest-grade nasty”.
I think that's partly a survivor (the disease surviving, not the patient) bias effect.
Things that could be solved by random discoveries are no longer considered the highest-grade nasties. There were a lot more intractably fatal conditions in 1870 than there are today.
So the likelihood of there being answers that could have been randomly discovered by medics with 1870 or 1920 levels of knowledge is tiny. At the same time, the sum of human knowledge has expanded so rapidly since then, it's not impossible for stuff to get missed.
Your tone policing in this thread is offensive.
Apparently you know many people that have died from cancer young, and this qualifies you to know how a terminally ill person should process that emotion.
You have zero qualification. How dare you imply that you know best for someone going through this.
Hopefully no one reading this is ever in that situation. But I'll defer to the individual who's facing the death count down to process it in their own way.
Your tone policing in offensive. Psychological and quality of life in end of life situations are valid and necessary considerations to include when talking about life threatening conditions.
I said nothing about how a terminally ill person should process anything. I stated what I have found to provide the best outcome when a person close to you has a terminal disease. If OP said 'my friend asked me to research...' I would have given a different response/no response.
But when OP makes it look like this is an initiative OP took upon themselves, for themselves, because they have lost too many friends, then yeah, I'm going to highlight that might not be the best possible position to come from if OP wants the best outcome for their friend. My response about outcomes it totally valid since OP asked for help with outcomes.
Too long didn't read
OP has a reasonable concern, I just don't think it's the only consideration at play.
To give a practical example, grapefruit juice contains some compounds that inhibit CYP3A4, a metabolic enzyme that influences the metabolism and absorption of many drugs, which is why many prescriptions tell you not to drink it while taking a given medication.
This interaction was not discovered until 1989, and not reported until two years after that. So before 1991, a simple dietary intervention that affected like half of all drugs and that could in principle have been noticed by patient who felt bad after drinking a common household beverage, was bro science.
Which is not to say "and therefore just do whatever", but just to point out that there's plausibly a lot of low-hanging fruit still left if you can figure out where to pick it.
The problem is you can't figure out where to pick it; it's lost in a sea of superstitious noise.
Even if you could find this fruit easily, "a food that cures cancer when eaten" does not exist. That would surface in epidemiological studies very quickly.
I admire your optimism in epidemiology. In point of fact, though, we have a rough natural experiment in the form of a food that doesn't cure a disease, but rather makes half of all drugs worse. That's very valuable knowledge, and under ideal epistemic conditions it might have been discovered within a few years of organized drug discovery as such. Yet was not widely known until the 1990s. So that's a failed positive control, which suggests that our practical capabilities to detect these kinds of effects are limited. Understandably so, given that there is no general requirement for dietary logging in clinical trials.
That said, "a food that cures cancer when eaten" is not the bar for experimentation. More realistic might be something like "a dietary or behavioral protocol that, in some way, ameliorates this or that illness".
For organisms with our body plan, "a cure for cancer" is like talking about "a cure for defection". But clearly there's "stuff that is efficacious against particular instances of cancer", a lot of which we found through techniques like natural product screens, i.e. "just trying stuff", rather than via rational drug design.
It is indeed somewhat surprizing why it took so long to figure out grapefruit juice (and it was by accident during the study of the effects of coffee on a drug). Some of the early drugs that interacted with grapefruit juice where short-term agents like antibiotics, and others like channel blockers didnt have obvious detrimental toxicity though they might have had effects that were above the range of typical human variability. Powerful statins became household items a bit later, and all the cancer drugs were invented after this association was already known.
I think there is a lot of efficacy left on the table with modern studies, clinical trials, and drug development. Most of the work is looking for treatments that work for the majority of the population. If a treatment was effective than standard care for 10% of people, it would be discarded.
It is more economical to start over looking for something that works for 90% of people.
Drugs an treatments aren't evaluated and discarded when proven worthless. The bottleneck is the number of treatments in development, so they are discarded when something else has a better ROI.
Is it juice specifically that should be avoided? What about grapefruit in solid form? Pomelo?
All grapefruit… my wife has clear instructions on this for her heart meds
I love that someone asks for advice. Even for individual experience because he is miserable and some people are basically like "Nah just die. It would be uNeThIcaL."
It's incredible. People are completely out of touch.
Time is precious.
↑This. Stop. No. Don't go down the false hope path. It's cruel AF and puts off acceptance, wasting time that they can put to better use post acceptance.
Maybe let your friend explore what they want to do and you just give support. Celebrate what they celebrate and cry with them when they cry. Find(or better make) them some comfy/cute hats. If you want to research the things about the hospital, the procedures they are getting, the oncologists they are seeing, and drop re-affirming 'you are getting the best care'. They want to feel like they are getting good treatment. Not like 'if only they got something else they would have a better chance'. But reality is, they are getting the care they are going to getting. Hype the heck out of it, reassure them. Even if the care sucks, find something to hype. Ease the 'if only' burden/regret/fear on them, don't contribute to it with 'if only you could go see Joel Olsteen's prosparity preaching in person and he blessed you' or go see John of God in Brazil or something. If nothing else hype that the WHO ranked France in best overall healthcare. Leave out the 'in 2000'. 'Thank god we are in France, who the WHO ranked best in overall healthcare'. Find things for them to take comfort in.
https://www.who.int/news/item/07-02-2000-world-health-organi...
Personally, if I were dying and someone kept saying fake nonsense like "you are getting the best care" I'd probably cut off contact with them, or at least wish they would stop. I'd know I'm getting mediocre care like everyone else, that's also part of accepting the reality of the situation. I'd know my doctor probably graduated at the bottom of his/her class or else he/she wouldn't be an authorized provider on an HMO- and he/she probably can't understand or doesn't read the latest medical research on his/her own. And that probably doesn't matter one bit, because the "best care" wouldn't work either.
I might also want them to share technical ideas they think might help, or at least I would tell them if I wanted them to or not. If you decide to experiment on yourself, you can still accept the reality of a terminal illness. For me, that would be part of ending my life with dignity- knowing I sincerely tried to understand and solve the problem my own, and share what I learned with others, just like I did in the rest of my life.
The best care is not necessarily the best bleeding-edge treatment.
Most medical jobs are only possible at all (without burning out and destroying the person doing them) through them mostly acting in accordance with best practice and training.
The ultra-rich don't have markedly better survival from nasties like GBM than the rest of us, unfortunately, so if better exists, it's not something money can buy.
And where some degree of survival can indeed be bought, the medical industry does at least have a solid record of scaling it out to the professional classes, even if the poor go without.
> The best care is not necessarily the best bleeding-edge treatment
It's mostly a conceptual thing for me. As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind.
For example- I do have a doctor that is a hacker/nerd/scientist that also teaches college biochem courses for fun on the side and he was about to prescribe me a medication, but then based on an offhand comment I had made, realized I've had a number of bad reactions to medications that he knew off the top of his head were metabolized by the same liver enzyme as this new medication. This guy keeps a book about drug metabolism biochemistry on his desk, and the cover is nearly worn off from use.
I most likely have a SNP in that enzyme, that would have given me another bad reaction. This is deep nerdy biochem knowledge he was not going to get from any official protocol that led to better and safer care. The biggest problem here is we like geeking out on this stuff so much, he almost forgets to actually treat me when I visit him.
I've had other doctors that even if I had noticed the potential P450 enzyme issue myself, would refuse to listen because they have a fundamentally non-technical mindset, combined with ego issues about being the expert- that are usually made worse not better if I mention that I have professional expertise and training on the underlying biology.
In truth, I'll admit it is both quite rare to get any real benefit, and legally risky for the doctor to deviate from guidelines based on direct knowledge or understanding.
> As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind.
I recognize your appeal to community here, and I reject it: this isn't the hacker/nerd/scientist mindset, this is just you inverting the appeal to authority. Hackers/scientists don't accept statements as facts because they come from authority, but they also don't reject statements as facts because they come from authority. Authority is not a basis for accepting OR rejecting facts--authority is completely irrelevant in the establishment of whether something is factual. The hacker/scientist mindset doesn't require that the person in front of you understand the reasoning/evidence behind the protocol--it only requires that there exists valid reasoning/evidence behind the protocol.
Notably, in this case, the vague "some authority" you refer to is generally an organization that has collected a lot of reasoning and evidence on which to base their official protocols. The general practitioner doesn't understand all that reasoning and evidence because they can't--the human body is way too complex for one person to synthesize all the data on all the various things that could go wrong and treatments. Your general practitioner is merely there to execute treatment accurately, not to understand the treatment. Executing the treatment accurately is bloody hard enough.
If you don't trust the authority to do the research and come up with effective protocols, that's one thing, but if you don't trust the guy in front of you to execute the protocol accurately, because they don't understand all the reasoning behind it, it's you that's being irrational. Basing your opinions in reasoning and evidence is good; rejecting protocols which have been reasoned and evidenced because of some weird variant of identity politics isn't good.
Ask yourself this: Do you really understand how an OTC allergy pill works? Do you trust yourself to administer one to yourself? Why doesn't your hacker/nerd/scientist mindset prevent you from trusting yourself to administer a pill, then?
You are completely misunderstanding me- I am not talking about rejecting things just because they come from an authority.
I fundamentally reject that experts can make universal medical protocols that can be blindly applied by ignorant practitioners without high rates of really bad outcomes. It is done to execute cheap commodity medicine at scale, but it will never compare to having medical care from someone with deep understanding and individual context.
These type of context-free ignorant protocols will frequently do things to patients that are wildly inappropriate and dangerous in a way that would be obvious to people that actually know what they are doing, but completely missed by the average doctor. For example, a patient with regular bloodwork where every single kidney function related lab result is on the very edge of the acceptable range, but they're all marked green by some official cutoff, so the doctor doesn't even notice the biological pattern being presented- and is blindsided when the patient comes back later on with serious nephropathy.
Even worse- intelligent people that understand the evidence and the biology will self select out of even participating in developing such protocols- because the whole concept is nonsense. So these protocols are themselves mostly ignorant and outdated, and not developed by competent people.
One cannot commodify technical knowledge into simple protocols, especially with something as complex and poorly understood as biology. The only time this is optimal is in something extremely routine with no impossible to anticipate exceptions, or in an emergency where there is no time for careful problem solving: e.g. as checklists are used in aviation. In medicine they are only appropriate for first aid type situations.
Yes, when I have a health problem I generally read the scientific literature and understand it before accepting any treatment, unless it is an emergency where I am unable to. I do understand the mechanism of action for most of the OTC drugs (or as much as is known of them), and I am much more reluctant to administer OTC drugs to myself than most people are. For example, I would not take a Benadryl unless I was having a serious allergic reaction, because of the known risks of anticholinergics. I have a decades of training and scientific research experience in studying and modeling the biological mechanisms of drugs, and have patented drugs that are in clinical trial.
The following quote sums up my opinion of medical protocols better than I can:
"Knowledge isn’t a commodity, especially not a fungible commodity, as the medical business sees it. Consciousness and culture are part of the life process. It is exactly the commoditization of medical knowledge that makes it dangerous, and generally stupid. Doctors buy their knowledge, and then resell it over and over; it’s valuable as a commodity, so its value has to be protected by the equivalent of a copyright, the system of laws establishing the profession. Without its special status, its worthlessness would be quickly demonstrated. When A.C. Guyton wrote his textbook of medical physiology (the most widely used text in the world) in the 1950s, it was trash; as it was studied and applied by generations of physicians, it was still trash. The most compliant patients who bought their treatment from the most authoritative, Guytonesque, doctors were buying their own disability and death.
Each time you learn something, your consciousness becomes something different, and the questions you ask will be different; you don’t know what the next appropriate question will be when you haven’t assimilated the earlier answers. Until you see something as the answer to an urgent question, you can’t see that it has any value. The unexpected can’t be a commodity. When people buy professional knowledge they get what they pay for, a commodity in a system that sustains ignorance." -Ray Peat, PhD
Definitely true, and I know that its common for people who are terminally ill to feel the same.
My friend, you are on a website called Hacker News. This isn’t Normie News where we stick with the most common solution for things.
I guess hope can be false now.
Sure, if by "now" you mean "at least since Geoffrey Chaucer's time":
> And thys vyce cometh of false hope that he thynketh he thall lyue longe, but that hope fayleth ful ofte.
[1] https://www.google.com/books/edition/The_Workes_of_Geffray_C... [2] https://books.google.com/ngrams/graph?content=false+hope&yea...
Or, come to that, "at least since Cicero's time":
> ...cui legi cum vestra dignitas vehementer adversetur, istius spes falsa et insignis impudentia maxime suffragatur.
[3] https://anastrophe.uchicago.edu/cgi-bin/perseus/citequery3.p...
If I let playing the lottery change how I interact with the world/prevent me from dealing with my situation, because I hope I will win, that 'hope' is a negative impact on my life.
If I encourage my friend who is down on their luck to buy lottery tickets so they can have hope, am I helping them, am I being kind?
> guess hope can be false now
"Hope is false if it is based on ignorance of the correct assessment of the probability that a desire is fulfilled or on ignorance with regard to the desirability of the object of desire. Hope is justified—realistic—when the hoping person knows and accepts experts’ judgement about the probability of hope fulfillment. However, I argued, what matters for evaluating a person’s hope is not only whether it is realistic, but also whether it is reasonable in light of the aim and goals for which the person strives in (the remainder of) his life
...a person’s hope that an (experimental) treatment may prolong his or her life or improve the quality of his or her life can only be called false when he or she thinks that the chances of personal benefits are greater than those estimated by experts. If he or she does accept their judgement, continuing to hope is realistic. Hope is moreover reasonable if it contributes to realizing what a person strives for in (the remainder of) his life" [1].
[1] https://pmc.ncbi.nlm.nih.gov/articles/PMC6900746/#s10
I agree that the probability of a desired outcome is valuable information. But to call being unaware of this information “false hope” is a blight on our language. Hope is hope. It’s quite proven that believing a certain outcome is likely increases the likelihood of that outcome.
> to call being unaware of this information “false hope” is a blight on our language
False hope is still a form of hope in the same way a red car is still a car.
And it’s useful to delineate it. Hope is rooted in expectation. When we watch a film about a fraudster, the dramatic irony arises from the audience knowing the rube is being played even while the rube is quite hopeful. We may conclude it’s better for the victim to live in false hope. But again, it’s useful to understand it’s a hope that’s false (and that someone is making that decision for them).
If false hope is still hope the way a red car is a car, then false also has no meaning in this context. Would a false car still be a car?
I agree people should be informed and manage their expectations. My issue is that it’s a terrible expression that gets misapplied constantly.
Hope is premised on the basis that nobody knows the future 100%.
Experts can give a mostly-frequentist analysis based on past medical cases.
The unknown part is whether those cases apply to yours.
And nobody knows.
All the so-called probability is meaningless. It matters not whether your chances of remission is "99%" or "1%". Those numbers are meaningless in a specific case under a specific situation.
I understand this is not the commonly understood notion of probability, but the common notion is simply wrong.
I'm not saying experts are wrong, I'm happy to assume that their analyses are quite correct when applied to a population. I'm just saying the common way of interpreting their statistics onto one specific case (the one you care about) is wrong, because you can't just plug the probability onto a single person/case and round it off to zero or one.
Errr. So your point is I should be reassuring my friend, by telling him he’s getting fantastic healthcare.
I don’t get it. My friend doesn’t need reassurance. He doesn’t need to take comfort in the fact that France has good healthcare. He’s going to die and he knows it.
I am here just because I want to tell him: if you want to try something crazy, and it may not work at all, there’s this. If you prefer not to, that’s fine too.
Yes, my point is you should be putting your friend with a terminal condition at ease so that they can skip wasting any energy on regretting their healthcare situation thinking they would have lived 'if only...', and you should help them enjoy/process/maximize their remaining time.
I get what you want and why you are here, I do. Been there done that for friends and family. I lost my mom, don't think I didn't try to find every treatment, and for me she did them all no matter the pain/loss in quality of life it inflicted on her. In the end watching Joel Olsteen gave my hippie/anti christian progressive mom comfort so guess what, anti-organized religion me sat and watched Joel friggen Olsteen with her as she accepted and processed her situation, while inside I screamed 'noooooooo, we can't accept this! NOOOOOOOOOOOOO! Mom no, I can't lose you, and our final time can't be spent watching Joel friggen Olsteen!'. And on that final day, when she was suffering in worse pain than I can Imagine, I put on a brave face and told here it was OK mom, she can go now, she can have peace now, while inside I screamed 'you can not goooo! The world will end if you go!!!! You can't leave me, ever'.
Do you really think anyone is saying 'you can go now' inside when they tell someone it's OK to go? Do you really think everyone thinks their local medical care is the absolutely best in the world when they say 'man, good thing you got Doctor X, good thing we have this facility'?
I get what you’re saying, but I think there is too big a cultural difference for your advice to make sense for us.
Sorry for what you went through though, sounds like it was really painful.
I think it is ok to seek some alternatives or "hacks" for some hard to diagnose chronic stuff like fatigue, as there are so many things that can cause this.
However, when you know you have certain disease there is nothing like talking to an expert in the field. Internet is filled with garbage and misinformation now. People selling snake oil.
HackerNews is also filled with people who think they know better than experts because they can write code.
Reminds me of the joke: What do you call alternative medicine that works? Medicine.
If any of the wild things posted in threads like these actually worked, those things just be considered standard care.
For sure, I have an example from my life even.
I've seen a well regarded specials for a neurological issue I am having. She knows everything I've learned over the years and all about emerging research and treatments.
Suggested supplements I already knew about and meds. Also, said nothing is a silver bullet.
It's false hope, swallowed hook line and sinker.
Sure this is the right place for a good word
Person with cancer: I hope this new treatment works for me
You: FALSE!
This fucking pisses me off.
The current treatments ARE essential oils, and EVERY FUCKING ONE is recommending my friend he goes through chemo, radiation therapy and risky surgery, all of which are proved to be extremely debilitating, in the sake of following the standard protocol, with a potential reward of living some weeks more.
Meanwhile, it is proven that the Zika virus does kill GBM cells in humans. This is what causes microcephaly in newborns. Inoculating the Zika virus in a controlled environment yields zero risk, and has no side effects. Yet, no one will inject a Zika virus sample to a patient, because it is not protocol.
I have no idea why the random pub med articles aren’t reproduced. But what I know, is that maybe one of them is onto something. I was mostly wondering if anyone in the community had found it.
Remember than when the AIDS epidemic broke out. The doctors and labs didn’t help much. People took things in their own hands and tried stuff, and in the end, they found things that worked.
Sure it’s a moonshot. Why not try a moonshot? It’s stupid not to.
The ETH Zurich article I posted said something like “don’t try this at home, self medicating would be incalculable risk”, but is that a joke? Not trying anything leads to certain death.
> Why not try a moonshot? It’s stupid not to.
I'm a researcher in the biosciences, and know how unlikely it is that these one-off and in-vitro findings are likely to work but I would 100% scour the literature and try experimental treatments on myself if I were in this situation. You've made a good start in looking at some interesting ideas, and there are a few more in the replies. At the very least, it might provide some information that would help someone else. I'm not sure how one would actually go about getting infected with zika.
I'd also try to come to terms with the fact that these are very unlikely to work, and focus on getting my life in order, according to my values and goals. I'd also re-read Epictetus.
However, I will also provide what you are asking for here: If you want an anti-authoritarian biohacker with radical but not stupid ideas - especially about treating cancer look at the late Ray Peat's blog. I've published well received academic papers inspired by his work. But avoid his online followers, they are idiots. Much of his specific ideas and suggestions are basically outdated, but his general attitude towards understanding biology and solving problems on your own is excellent.
However, if it were not me, I would not suggest anything unless they very seriously asked me to do so. I am very much into weird medical ideas and theories, have a biomedical PhD, and yet do not try to play doctor to my friends and family. Sometimes I will offer to share ideas if they want to hear them, but leave it at that.
I'm not sure I'd call Ray Peat's ideas "radical but not stupid". He claimed that eating a tablespoon of honey could cure almost any fatal injury.
"Since the contextuality of communication is always in the foreground when I talk or write, you know that someone is confusing me with an authority when they talk about my `protocol' for something. Context is everything, and it’s individual and empirical." —Ray Peat
I suspect you are removing so much nuance and context as to make a reasonable idea seem quite stupid. Do you have a reference to that specific claim?
His general approach is to figure out what biological systems are impaired in a particular health condition, and rationally think through the possible underlying bottlenecks and regulation - including things like the nutrient substrates for metabolism, and hormones that trade off metabolic energy between different systems.
At a philosophical level, he was generally opposed to any type of prescription or protocol that claims to "cure almost any[thing]" and emphasizes the need to understand the individual context and biology for a certain situation. He flat out refused to give any general health or diet protocols, and only said what he did for himself in very specific situations related to his own personal health problems- which ignorant people with no biological knowledge have inappropriately tried to translate into general prescriptions and diet protocols.
They're cargo culting his personal diet, etc. when really following his philosophy would involve deeply studying and understanding the biology with an open mind, and thinking of creative solutions on your own.
If one is treating him as an authority, and copying what he did or said personally, they are already entirely missing the point, and acting completely against his actual philosophy of problem solving. His goal was mostly to strip authoritarianism from medicine, and replace it with an orientation towards personal deep understanding and creative problem solving.
It is my belief that people are so conditioned to expect simple nonsense "universal protocols" from both mainstream and alternative medicine, they refuse to listen when his whole point is to get people out of that kind of thinking... and try to still extract them from whatever he says.
I sympathize with your situation and frustration. And yes, temozolomide and bevacizumab and whatever else they're giving your friend won't buy much time. Everyone knows that.
Part of the problem unfortunately is that glioblastoma, like many highly-aggressive cancers, is not a single disease but many. The cells mutate frequently, and each group of mutant cells (call them a "clone") is in business for itself to survive anything you throw at it. So something like your Vika virus idea, for instance, might have a 1 in a million chance of killing 99% of the cells, but the remaining 1% will be completely resistant and go on about their business. (Meanwhile, the virus is orders of magnitude more likely to cause more harm than good.)
Since you've known so many people who've had GBM, there may be value in investing in research that might help someone in the future. There are two broad moonshot approaches. First, the immune system is the central axis of cancer. Every cancer that grows and spreads is an example of the immune system failing to do its job (usually because the tumor has shut it down). If we can better understand how this happens, we can make pan-cancer drugs. They sort of already exist: one group is called immune checkpoint inhibitors. They basically unmask the tumor, allowing the immune system to identify it and take care of business. But they're only part of the solution, we obviously need more.
Another approach is further out there, and involves development of nanotechnology. Bacteria-sized machines small enough to get into cells could ideally be tailored to do pretty much whatever we want. This is a bit more of a long shot, but this is the sort of thing that would help solve the endless game of whack-a-mole that is cancer medicine today.
Your understanding how HIV/AIDS was treated successfully is completely wrong. HIV/AIDS was treated through an absolutely enormous amount of research and a careful negotiation between the scientfic community and the diseased community.
> Remember than when the AIDS epidemic broke out. The doctors and labs didn’t help much. People took things in their own hands and tried stuff, and in the end, they found things that worked.
What? how did people take things into their own hands?
https://en.wikipedia.org/wiki/Dallas_Buyers_Club
>> Remember than when the AIDS epidemic broke out. The doctors and labs didn’t help much. People took things in their own hands and tried stuff, and in the end, they found things that worked.
What??? It was the FDA that blocked access, not doctors and labs. It was the doctors and labs that were trying to find treatments. Peptide T and AZT had several studies going on.
Likelihood of this happening in the internet era, for something with an order of magnitude more rapid progression than HIV/AIDS?
I'm really sorry to hear that. Since you're asking for moonshots and weird things to try, here's something they can ask their doctor about:
> Case reports involving glioblastoma patients using water-only fasting regimens in conjunction with other forms of cancer treatment have reported favorable outcomes with respect to tumor growth https://pmc.ncbi.nlm.nih.gov/articles/PMC2874558/ https://pmc.ncbi.nlm.nih.gov/articles/PMC5884883/
From https://pmc.ncbi.nlm.nih.gov/articles/PMC6836141/
I have a relative with glioblastoma who could see his granddaughter born if he extends his life a while. Thanks a lot for sharing!
You're welcome. I read a lot about fasting and I have a lot of experience with it. It's helped me, personally, heal many things (but not all of them -- it's good to have low expectations.) In any case, it's a mind-expanding experience to go without food for a while, regardless of the outcome.
Please Google Thomas Seyfried and William Makis. The latter is controversial—if he’s not completely fraudulent and making things up, he might be onto something. He’s sharing emails from numerous cancer patients who claim to have healed using these two particular molecules.
Exercise can supposedly help outcomes for some types of cancer—-I wonder whether the mechanism is similar to that of fasting. The supposed mechanism AIUI is that exercise makes less glucose available to the tumor. Podcast with more info here: https://overcast.fm/+6j6rLbfGM
There was an episode from “diary of a ceo” (don’t let the title fool you) where a scientist was making similar remarks:
https://youtu.be/VaVC3PAWqLk
I wouldn’t usually post these kind of things, but since OP is asking for moonshots i’ll take a chance.
Best of luck to your friend!
You still shouldn’t post that kind of thing. Especially not that fraudulent bullshitter host.
Thanks
I'm one of those stubborn types that will refuse all medical treatments, lots of fasting is my current go to strategy if some tumor gets out of control.
steve jobs and many others tried things like that. if it makes you feel good then sure, but that alone will kill you faster when a tumor(s) gets out of control.
You should ask them if they want you playing doctor.
I have a chronic disease, not fatal, and totally manageable. But the most annoying thing is when someone finds out and suddenly pretends to be the expert.
Of course my doctors and I investigating it for years were completely wrong! I should’ve ate more apricots!
Please just check with them if they want their limited time spent like that.
dont get why that upsets you. I have had a chronic disease my whole life and one of the people who offered help completely saved my life.
If anyone else told me to eat apricots Id be grateful for their time and attention.
I would probably eat the apricots and tell them it was fantastic, even if it had no effect.
Sorry I just have rarely seen my friends or family offer any advice.
- Back to OP, Ive always remembered Paul Stamets recommending the stamets-7 mushroom blend with research papers talking about recession. no idea if it works.
>dont get why that upsets you.
Because this often sounds like people think you haven't tried (almost) everything yet and of course they might have a solution.
I think your and parent commenter's situation and reaction are polar though. One was in the situation where they receive an unwelcome advice all too often, the other one would like more attention but never got one.
Notice than you are prepared to do something you are not really iterested in and possibly don't even need - only to give some 3rd party a satisfaction as a "thank you" for their attention.
How else could they get to know that if the whole topic is taboo?
Well, it's not a taboo (at least I've read it as if the person is just tired of it).
But generally you can just ask something like "Will it be fine with you if you I share a piece of advice?"
This works even better if you tell why you think this might be relevant at all (for example if you have some expertise or have a very similar experience yourself).
The problem is that when you are trying to accept your fate and come to peace with it, and everyone else around you is trying to give you false hope. It's hard to break free from the constant futile wishful thinking if everyone around you is doing it for you.
Sometimes you should just let people work with their doctors and come to peace with their situation.
If I was dying of cancer, and someone told me to eat apricots, I might shove the apricots down their meddling throat.
It can be bit annoying because people people think "can't hurt to try" but there's thousand unfounded things to try, little time, no way to pick and some of them could hurt. There's no harm in listening to ideas, being expected to implement them is another thing.
a) Nobody here is talking about unfounded things nor demanding anyone do anything.
b) There are not thousands of things to try. In fact in most cases there will be no options since you will need to be in a clinical trial, asking a Doctor to try something unproven and unethical or need substantial resources.
a) Well founded things are roughly the things your doctor recommends. The rest is unfounded. Some unfounded things might really be worth trying if you have time and strength. Most aren't. Yet people who know you that mean well but have very limited capacity to evaluate what is worthwhile and what is not will firmly believe that the idea they are bringing you is the one that will cure your illness and the only hurdle is convincing you to apply it. That's what gets tiring.
b) In most cases there are just a few things or no things that actually might work. But there's thousands of ideas floating around of what people say might help. Ranging from "you must eat a spoonful of this spice daily" to "there's this small lab on the other site of the planet that make this expensive substance that will cure you but what they do isn't technically legal and might kill you".
I think the point here is that the OP was asking for moonshot suggestions...and people responded. Whether the person with the illness wants to hear these suggestions or not is between them and the OP. It is a sensitive area and people are all over the place in how they want to deal with it and its important to respect that.
> Nobody here is talking about unfounded things nor demanding anyone do anything.
You sure? There's people commenting "just checked google scholar" and naming random plants without citing anything.
> I would probably eat the apricots and tell them it was fantastic, even if it had no effect.
You might for the first. Maybe the second. Probably not for the fifth. Certainly not the tenth. You may be tempted to hit the fiftieth.
If everyone around you feels the need to help, and provides the same insights, because they're not experts, then they're providing you the same repeated insights that you encountered at the beginning of your journey. A journey you may already be decades into, and having the same information shoved down your throat, day after day after day.
There is a reason that "Have you tried yoga?" is a meme in the chronic illness groups. Yes, it may provide some limited help, like most exercise. But 3652 days of hearing about it, later? Your patience might not have lasted.
Not everyone wants to be reminded of their situation or turn major aspects of their life into a struggle.
first: the person who doesn't want to be reminded is probably not the person that is approaching you and actively telling you that they are approaching the end of their life.
second: speaking to them about their plight isn't the struggle; DEATH IS -- and we're all in that same boat.
Telling people that you're terminally ill doesn't necessarily mean you're desperate to avoid death. It can be that you want to make the most of the time you have left, or ask for help with doing that, or need reassurances about protecting loved ones, a legacy, getting creative or scholarly work out into the world, or need help dealing with your fears/regrets or...many other things.
I don't get this existential fear of death many people have. Entropy is a fundamental fact fo existence. I think a lot of people are fer less concerned with dying as such than they are with minimizing the suffering, loss of autonomy, or inability to prepare that often precedes it.
Same boat with having a chronic illness, not fatal, but no cure either. It gets tiring wading thru all the snake oil salesmen selling false hope. And it isn’t them directly, because my older family members will hear about it with “have you tried…”
> I should’ve ate more apricots!
Did you mention apricots deliberately? Apricot pits were a huge, huge alternative medicine in the 1970s under the name Laetrile. Proponents said that Laetrile would cure cancer and was being covered up. The FDA banned it, saying that it accomplished nothing other than potential cyanide poisoning. Meanwhile, tens of thousands of patients a year went to Laetrile clinics in Mexico and spent tons of money on it. Laetrile was smuggled into the US from Mexico, second only to marijuana. Enthusiasm dwindled after studies failed to find a benefit. (Just some hopefully interesting history about apricots.)
A news article from the time: https://timesmachine.nytimes.com/timesmachine/1977/11/27/939...
I have a friend who is an MD, and he recently asked me what I’ve been doing to manage my seborrheic dermatitis. Since dermatologists have no cure for it, we often have to resort to anecdotal treatments. Moreover, big pharma doesn’t invest in studies for treatments they can’t patent. Blind trust in medical professionals isn’t necessarily wise. Anecdotal solutions still hold significant value, in my opinion
What have you been doing? Asking for a desperate friend (me).
clear men 3in1 active carbon shampoo. avon argon oil. ketogenic diet (I do this for weight loss but it helps for SD too)
My best friend died of brain cancer.
Although not from the cancer itself. He died of an opioid overdose. He was prescribed pain killers for cancer-related pain, and got hooked. His doctors stopped prescribing, so he found it elsewhere, and got a bad batch with fentanyl. (He was a VC living in SF, well to do, he had all the treatment money could buy, but cancer ended up not being what killed him)
I know this isn’t what you’re looking for, but be sure to not ignore other parts of his health. Addiction and other disorders are common among people with terminal or not-so-great prognosis.
The most you can do is to be a great friend.
> Addiction and other disorders are common among people with terminal or not-so-great prognosis
It's horrifying that we don't just give them what they want. Who are we to judge?
I think that's a kind sentiment, but the counter arguments would be (1) they could very likely overdose and die, and (2) an addiction changes who you are, so it's not that "they" want it, it's the addiction that wants it. Your friend is the "they" before the addiction, and likely hates themselves after every time they fall off the wagon. To be clear we don't know the exact details, so we're speculating ; I could imagine some universe where it might make sense to let them, but in most cases I think what the real "they" would want is help breaking the addiction so they can spend their time doing the things that actually matter to them and give their life meaning.
That sounds incredibly patronizing. For some people, just being comfortable and happy for the remainder of their brief miserable life is meaning enough.
And if so, then that's fine. But for others it isn't. And my guess is the latter is more common.
This video popped up on my YouTube recently and illustrates this idea well: https://youtu.be/JyzJrkF21MM
Taking opiates from a terminal patient should be against the medical oath.
Stopping opioid because a cancer patient is addicted is incredibly cruel! sorry for your lost.
Responded to one of your sibling comments with more thoughts, but it could very well be what the patient themselves wanted -- help with breaking the addiction so they could instead spend their time doing things they care about.
> He died of an opioid overdose
I'd say this is quite far away from the top entries in the list of worst ways to go.
> this is quite far away from the top entries in the list of worst ways to go
Genuine question: is it? I would have thought it's quite peaceful. Particularly since pentobarbital overdose is how we put down our pets [1]. (Not an opiate, but also renders you unconscious.)
[1] https://en.wikipedia.org/wiki/Pentobarbital#Euthanasia_and_a...
It doesn't even matter whether this is painful for the body or not because you (as in your consciousness, your mind) are not there to witness the process and experience any physical feelings.
> doesn't even matter whether this is painful for the body or not because you (as in your consciousness, your mind) are not there to witness the process and experience any physical feelings
We have no known way to know this.
I believe we do, given that thousands or perhaps tens of thousands of people go into a controlled opioid coma every single day to spare experience of pain and suffering and then come back alive and well, me included. I'm talking about sedation of course.
Addiction and other disorders are common among people with terminal or not-so-great prognosis.
Or maybe his death was an outlier .pain meds are well tolerated by most people.
I have heard some people having luck by switching to a ketogenic diet. Here’s a paper I could find on PubMed about this. Sorry to hear about your friend.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9504425/
Edit: I am not a doctor. My wife is a physician and I spoke to her before posting this.
This. It is very dependent on the type of cancer. There is a lot of research on this. For a little context, I was a pediatric neurology professor for a while, and have been on a low carb diet for a decade. Much of the department did low carb, as did much of the oncology dept. Many kids with epilepsy are put on keto as well with great effect. I did a deep dive into low carb research before starting and keeping with the diet, and found a lot about using it for cancer therapy. I'm not sure what has changed in the last 10 years, but the above abstract looks promising. With a GBM, they probably don't have much to lose. *This is not medical advice, I'm not an MD (I was a BME doing epilepsy research), have them check with their Dr.
The keto diet was actually developed specifically to help people with epilepsy[0].
[0]: https://epilepsysociety.org.uk/about-epilepsy/treatment/keto...
I wish I had something better to add, but I can add an anecdotal +1 to this.
A relative went keto pretty hard after a bad diagnosis and they are still going strong. As far as I understand it, cancer cells can only function on glucose.
Some types of cancer cells
do you have a source for this? not arguing, just would like to read more
In my life a relative (by marriage) went keto after a bowel cancer diagnosis, and died at age 45
+1 on this. I did my thesis on Glioblastoma-related imaging stuff [1]. The state of the art at the time (~2016) was that, realistically, none of the current treatments were "great", unfortunately. In short, you have 1) surgery, 2) chemotherapy, 3) radiation. Those treatments did extend survival in studies, but the overall survival of Glioblastoma patients was (tragically) still very bad at 12-24 months, and none of those therapy options were a cure.
As a side note, I recommend the book "Being Mortal" from Atul Gawande. The TLDR here is that our healthcare systems tend to overtreat patients, especially those with cancer who actually have a rather bleak prognosis, because it's easier for a physician to simply order all treatments and tell the patient "all good here, good luck" instead of taking the time to sit down and have a (long) conversation about the bleak prognosis and which options are actually still worth it. By "worth it" I mean that there are trade-offs to each treatment option, and it takes some very careful weighing whether each one provides a net benefit for your friend's individual situation. E.g. surgery might extend survival by X months, but might also create, worst case, new disabilities. So now you're faced with the very difficult decision of whether to potentially live for a shorter time with less disabilities, or for a longer time with more. There's no perfect answer, but having this sort of discussion is a good step which many patients unfortunately never take. I think this is a failure in our healthcare systems and maybe in the education of physicians.
Now, if I personally had a Glioblastoma, on top of the standard of care (surgery probably makes sense etc.), I think the ketogenic diet would currently be my best shot. Yeah, sure.. it's mostly only case reports so essentially anecdotal evidence, but it does look promising.
Good luck for your friend!
[1] https://scholar.google.com/citations?user=tinu7tYAAAAJ&hl=en
Thanks a lot, I hadn't seen this. I'll read through.
While we're thinking about it, Vitamin D3 and K2-mk-7 are known to be helpful in that regard.
Not an expert or doctor disclaimer.
Sugar is the food cancer cells crave. Not a miracle cure but restricting sugars may help reduce the growth of the tumor.
I'm pretty sure that's an old myth that sugar preferentially feeds cancer cells and that you somehow starve them by reducing sugar intake. After all, the body maintains stable blood glucose levels regardless of how low your sugar intake is.
e.g. https://news.cancerresearchuk.org/2023/08/16/sugar-and-cance...
"Reducing sugar intake" is not the same thing as ketosis. I have no strong opinions on whether it would work or not, but that's an article addressing something different and more clearly a misunderstanding.
Even in ketosis your body keeps a stable amount of glucose in your body. The mechanism is different, but the end result isn't.
Your brain _only_ operates on glucose, you'll never run out unless something is seriously wrong with your body.
If diet could stop cancer, we'd be done by now. I guarantee every cancer will mutate to overcome any change in diet you can throw at it.
All cancer treatments are probabilistic. There are no cures, just interventions that increase survival rates. There are no honest sentences that begin with "every cancer".
There is no diet that will even intervene with cancer, unless the patient dies.
Cancer is the patient's own cell that has mutated to a point beyond apoptosis and adapted to be able to draw nutrients from cells around it. It started from just one cell. It has already evaded dietary fluctuations and adapted.
EDIT: the reason I'm a spaz about this is I feel too many people focus on diet as the focus of cancer. While it might be good for some prevention, it will not stop it, and I want people to focus on real treatments.
I'm with you on this: Anyone that rejects clinically studied treatments in favor of "alternative" treatments is an idiot.
That said, the keto diet is being studied clinically and preliminary research does seem to indicate that it has an effect. So it may be an "in addition to" treatment. That said, the news isn't entirely good:
https://www.cancer.columbia.edu/news/study-finds-keto-diet-c...
The bottom line is ask your oncologist. They're probably paying attention to these keto studies and they know more about your cancer than HN does.
I did. Diet is not going to cure cancer, but they want us to eat well to survive treatments.
Are you sure about this? There is data to back it up in The China Study https://en.wikipedia.org/wiki/The_China_Study and mentioned in the Forks over Knives documentary. That's more about prevention, but it has a measurable impact on cancer rates, I don't see how that could be classified as no impact.
The book has been debated.
https://www.redpenreviews.org/reviews/the-china-study-the-mo...
If diet stopped cancer, then the patients who eat less would see noticeable effect. This has never happened, except for maybe Otto Warburg, but even that is disputable[1].
[1] https://physoc.onlinelibrary.wiley.com/doi/10.1113/JP278810
I appreciate the reply, I'll read through the links.
I don't understand unreasonable positions like this.
Nobody is saying that people should stop "real" treatments or that diet must be the primary or sole focus for treatment. But given that a change of diet (a) costs nothing, (b) has no downsides, (c) potentially may work it seems strange not to do it.
And yet it is a highly focused topic and cancer rates have not gone down.
Are keto diet/lifestyle changes/etc actually used by doctors for cancer treatment? Even if those were effective you can't expect cancer rates to go down until they get deployed massively
> Effect of fasting on cancer: A narrative review of scientific evidence
> Emerging evidence suggests that fasting could play a key role in cancer treatment by fostering conditions that limit cancer cells' adaptability, survival, and growth. Fasting could increase the effectiveness of cancer treatments and limit adverse events. Yet, we lack an integrated mechanistic model for how these two complicated systems interact, limiting our ability to understand, prevent, and treat cancer using fasting. Here, we review recent findings at the interface of oncology and fasting metabolism, with an emphasis on human clinical studies of intermittent fasting. We recommend combining prolonged periodic fasting with a standard conventional therapeutic approach to promote cancer-free survival, treatment efficacy and reduce side effects in cancer patients.
https://pubmed.ncbi.nlm.nih.gov/35848874/
Diet impacts survival rate, in conjunction with treatment. Please stop spreading misinformation.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8749320/
This paper you linked didn't solve anything. Please read it, and stop spreading misinformation:
>> However, patients may not tolerate such a CR diet for prolonged time. Therefore, as alternative, it has been proposed an intermittent fasting regimen, whose beneficial effects also appear promising though somehow controversial in preclinical settings. This will require further elucidation in controlled clinical trials.
Have you spoken to oncologists and cancer nutritionists? I have.
It seems there's some misunderstanding here. The paper doesn't claim to have solved the issue but highlights areas requiring further research, particularly controlled clinical trials to confirm the effects. Intermittent fasting is indeed a complex and debated topic, as preclinical findings often don't translate directly into clinical practice.
I appreciate that you've spoken to oncologists and cancer nutritionists—real-world expertise is invaluable in discussions like this. Could you share any insights or perspectives they provided? It could help clarify and enrich the conversation for everyone.https://pakrozee.pk/
I cited a paper which showed “promising pre-clinical results” in the section you cited.
You have “trust me bro!” to dispute that.
Please stop spreading misinformation.
You cannot stop cancer cells with diet alone. If you think otherwise, make your own clinical trial and publish results. I'm not spreading misinformation, instead, I'm challenging those who claim their diet can cure cancer. Copy-pasting internet links doesn't cure cancer either.
Look at MDAnderson in Houston.
https://www.mdanderson.org/cancerwise/glioblastoma-survivor-...
https://www.mdanderson.org/cancerwise/how-i-knew-i-had-a-bra...
Along with other success stories, they helped my sister with a particularly lethal form breast cancer in one of their clinical trials.
Also - If your friend is approved and needs a place to stay, let me know. Know a couple of people who help house people who are getting treatment here.
You’re an amazing friend and I hope your friend gets the care they need
Google Richard Scolyer: Top doctor remains brain cancer-free after a year. A year after undergoing a world-first treatment for glioblastoma, Australian doctor Richard Scolyer remains cancer-free.
Check out Sonalsense - https://www.sonalasense.com/for-patients. Requires specialized machine not in US as of last year.
Dr Mitchell Berger out of UCSF is the GOAT.
Scolyer is in the relatively fortunate position of being a world class cancer researcher before getting cancer, so he had the resources of an entire oncology lab to give himself a speculative treatment.
Best hope in this regard is to keep an eye out for a resulting clinical trial, unless you have access to a friendly cancer research lab that wants to replicate the experiment.
Here’s a summary of all of the current treatments and near future treatments for GBM/glioma: https://docs.google.com/file/d/1kTa3eamaL91Smjh9r_0CYv5OYFX4....
This is as complete a list as you’ll find, written in plain English, with citations for every part of it. Slightly out of date but there hasn’t been much that’s new and different since last year. Vorasidenib was approved recently in USA and it’s the most effective IDH inhibitor - worth reading more about.
The document is focussed on glioma but there’s a lot of GBM research. Unfortunately the short answer is that there is no cure and there is treatment that might be a cure under development. There are treatments that slow the course, and the patient’s doctors know all of them and they will recommend what’s best. This is an area of medicine that is hard for amateurs to learn about, and a neurooncologist has decades more training than their patients. The reality is this is a horrible disease that currently has no cure - and the treatments that work are all complex medicines prescribed by specialists.
I read about this guy last year, using melanoma approach (he is a melanoma specialist) for his GBM: https://www.theguardian.com/books/2024/nov/03/brainstorm-ric... Of course n=1, but I find it interesting when there is this cross field way of thinking.
He’s gotten a lot of press attention and it’s great, but it’s not something new. The researchers who do GBM work are always looking at developments in the parallel tracks of other cancers. It’s not really the case that they haven’t looked at melanoma work. That’s sort of a news spin on the nature of this work. There’s always cross-pollination because the genetic underpinnings of cancers are almost always related. For example, IDH inhibitors (the most recent advancements for glioma patients) are relevant for several kinds of cancer, not just gliomas.
Thanks a lot
You’re welcome. I’m the author if you have any questions.
The occurrence of GBM is about 3 out of every 100,000 people. If you happen to know 4, is there some commonality? Do you all work together in the same industry? Do they all live in the same town?
My aunt is in her 70s and has 5 friends currently with cancer. My belief is that it's downstream effects from Covid wrecking people's immune systems and their ability to naturally fight cancer. Time will tell.
Bayes and Occam would suggest otherwise. If you're in your 70s in the US it's likely many people you know have cancer (unrelated to COVID). Especially now, given that detection is better than ever and more people are surviving longer with cancer.
Even more so, Probably 100% of the population over 70 has cancer in the sense of a clump of abnormal cell divison, just that for a lot of them it’s so slow growing or in a benign tumor that it doesn’t get discovered or treated.
Not even thinking about environmental factors then?
Unlikely to be COVID. The mRNA vaccine on the other hand...
They are never gonna realize, the spell is too strong, particularly here
If anybody with an open mind reads this: plasmid DNA contamination / insertional mutagenesis (use a source that hasn't been altered by the pharma industry for cover up)
I was about to say this knowing 4 people with GBM means there is something in your environment causing this.
I am sorry about your friends.
No it's so weird, no connection at all between any of them.
All four have the same kind of brain cancer? Or just have some kind of cancer?
Yeah all GBM
Military? Glioblastoma is correlated to military service in the First Gulf War
Radar microwave radiation?
Burn pits (link is about Second Gulf War)
https://amp.cancer.org/cancer/risk-prevention/chemicals/burn...
Nope
Sorry friend, there no hacks from brain cancer. Mortality rate at Stage 4 is 100%. You're better off spending as much time as you can with them.
Unfortunately this is true, and there’s no near-term treatment that might change this outcome. There’s some treatments for slowing it down but there’s no proof of anyone being cured by any experimental method. There’s great progress being made and thousands of people working on paths to a cure but we’re still early days for some diseases.
Personally knowing four people with GBM and not being an oncologist is exceptional and worrying. That feels like it should be raised to… someone. It is very possible something bad is happening and a commonality needs to be tracked down urgently.
It is indeed very strange, none of these people lived in the same place or got diagnosed at the same time (some 20 years ago). Most are fairly remote to me though... Like : a good friend's mom, or my wife's cousin's husband, etc.
I knew two people (one adult, one child) who lived in the same building and got diagnosed with leukemia (~14 per 100,000) shortly after each other, maybe within a few weeks.
It's anecdotal, of course, but I've always thought that there could have been a connection.
It could be birthday paradox, but it could potentially be enough to get someone to come check for contaminants.
Looks like benzene, some pesticides, and formaldehyde are the common workplace exposures that can trigger leukemia. But some of those can turn up near housing.
> benzene, some pesticides, and formaldehyde are the common workplace exposures that can trigger leukemia.
That rings a bell. I remember that someone mentioned a recent repainting of the building. The incident happened at least a decade ago, so I can't remember all details.
I just finished Silent Spring last fall and was shocked to learn they already knew DDT and other pesticides were causing leukemia back in 1960. I guess PR from the chemical companies is working, because I would have guessed 1979-1985.
Damn. Sorry to hear that.
I have had two friends get it, and neither made it. Another died of it, but it metastasized from their lung (Yeah, I have known a hell of a lot of people with cancer. Most have survived).
If you have known 4 people with the same cancer, they call that a "cluster," in the vernacular, and it might not be a bad idea to see if you can figure out where it comes from.
Here on Long Island, we have numerous breast cancer clusters. I am pretty cynical that people know the cause, but don't want to deal with it.
I had a serious non-cancerous tumor, back in '96, but managed to learn to walk and chew gum again, after a couple of months.
The key is whether or not it's operable. Mine was, none of my other friends were operable.
> I am pretty cynical that people know the cause, but don't want to deal with it.
I looked up "long island breast cancer" and saw a long list of risk factors. Out of curiosity, did you have a specific one in mind?
Long Island is one of the oldest industrial areas in the nation.
Many those planes and tanks that you saw in the WWII movies were built here.
The companies around here dumped their waste straight into the aquifer. For decades.
Where our drinking water comes from.
But it’s also some of the most valuable real estate in the nation.
Long Island is a very dense with overhead power lines, but then again look at Tokyo.
My dad lasted ten weeks after diagnosis. If I get it I'll put my ducks in a row and exit intentionally, rather than raging against the dying of the light. Fighting it is great if your friend is up for it, and it's a way for you to show your love. But listen carefully and don't force it.
Sorry for your dad. That thing's a bitch.
My mother has “frozen” breast cancer for 15 years using oral bloodroot (Sanguinaria canadensis).
To give you the short version of the story about how it works for HER: taking bloodroot causes the cancer to shrink too small to take a biopsy, but not go into remission, and when she stops taking it per the doctors advice, it gets very large and they start talking about surgery.
Nobody really understands how it works and a lot of people claim it doesn’t work, but I think it’s probably similar to a low dose natural chemo.
I have seen it work unusually well with skin cancers (melanoma) as well using paste application (this is called black salve), so despite what the FDA claims, I think there’s something there, and there’s a few papers that agree.
Don’t put black salve on your head, it leaves a hole where the cancer comes out.
About Sanguinaria canadensis, Wiki says: https://en.wikipedia.org/wiki/Sanguinaria
It has been used by native Americans to treat cancer for a very long time but YMMV. It has worked for us.
She also swears by a product (basically a huge B17 dose) called Cascading Revenol that a guy on an old set of CDs Phillip Day (“the Truth about Cancer”) recommended to take with blood root.
It advertises itself as a natural tumour growth inhibitor.
Thanks, worth a shot, it can't hurt
According to Jake Seliger, it can hurt. https://jakeseliger.com/2024/07/29/more-isnt-always-better-d...
That spinning hat is pretty cool. When cells breath they create a byproduct (Reactive Oxygen Species) - all cells do this, they need to keep their ROS levels in check else the cell will die, but because cancer cells have messed up mitochondria, they don't do this correctly and typically end up with way more ROS. That hat agitates the cells so they produce more ROS, but because the cancer cells are almost at capacity, it overloads them and they die from ROS strangulation.
"For 4-hour treatment:
Reduced DIPG cells by >80% Reduced GBM cells by >60%"
> That hat agitates the cells so they produce more ROS, but because the cancer cells are almost at capacity, it overloads them and they die from ROS strangulation.
If this is the understood mechanism and it has measurable results, why isn't this in widespread use?
it looks like research is way underfunded. My guess is that it is too rare, and people die quickly so clinical trials really suck.
Research is about a year old, even with fast track 4 years would be fast.
Have you looked into ivermectin and fenbendazole?
https://pmc.ncbi.nlm.nih.gov/articles/PMC3158014/
https://pmc.ncbi.nlm.nih.gov/articles/PMC7505114/
Mel Gibson was just on Joe Rogan talking about it
https://x.com/TheChiefNerd/status/1877525664040988721
No, thanks a lot for pointing out.
Goodluck to you and your friend. I only know about PEMF and will read about sOMF. I bought an ICES-PEMF a few years ago just to try it out for my back pain and it did help in reducing it and healing it. It's small and battery operated and was designed as a wearable but you need to come up with your own way of holding it close to your body. https://www.youtube.com/watch?v=ZnGpibdAoic
Fuck ivermectin and fuck you for even suggesting it. It doesn't work on cancer, end of discussion. It works by paralyzing worms on ion channel that humans DON'T have.
Do you have a source for this? The linked study claims it has potential.
Did you even read the links posted? The study for ivermectin states everything is speculation. So why is anyone challenging me when they didn't read the studies?
>> Unfortunately, there have been no reports of clinical trials of IVM as an anticancer drug. There are still some problems that need to be studied and resolved before IVM is used in the clinic.
The method of action of ivermectin is well known. Lots of articles state it works against COVID-19, but clinical trials have proven this to be false. Yet people still cling FOOLISHLY to that idea, and now creeping into cancer. But, it's GREAT against parasites!
https://www.sciencedirect.com/science/article/pii/S022352342...
>> What is important, ivermectin does not cross the blood-brain barrier, and therefore, does not affect mammals, including humans, in which GABA receptors are located mainly in the central nervous system. Nevertheless, accumulation of ivermectin in the human brain has been observed after administration of doses about 100 times higher than the recommended one.
I just now checked out my theory of switching to a keto diet - this appears to be terrible advice.
There appears to be some initial idea of using keto to control cancer [1]. My working theory is that cancer is a high-replication cell, and the ketogenic diet is anti-growth, increasing the probability of it outgrowing the resources available. It appears possible to starve them of glucose [2].
In reality, it appears the keto diet may encourage metastatis, by promoting BACH1 [3]. You may end up with weaker cancer spread around the body. It's extremely unclear if this is a better situation or not.
[1] https://pmc.ncbi.nlm.nih.gov/articles/PMC6375425/
[2] https://www.sciencedirect.com/science/article/abs/pii/S08999...
[3] https://pmc.ncbi.nlm.nih.gov/articles/PMC11152127/
Thank you for this. I don't have your background but I have GBM and research it and yes agree there is a total bypass in your system for keto. Your body finds a way to get what it needs. Keto might buy some time before that takes effect but it is not a solution.
If you went the keto route, you may want to explore BACH1 inhibition. Study [3] acknowledges the effective role of keto in reducing or controlling tumor size, but with an associated increase in BACH1 expression appearing to account for the increased metastasis (in mice).
Apparently there are a couple small molecule inhibitors that inhibit BACH1 (see ChatGPT). Unfortunately, they seem to be still in the experimental or early clinical stages.
I'm not in the medical profession, I'm just a humble internet user. It's entirely possible you know more than me - I'm happy to hear other ideas.
> Keto might buy some time before that takes effect but it is not a solution.
It might still be a solution. The cancer may be spread out and easier for the body to effectively tackle. Also note that it may depend on type or location.
One thing that does seem clear is that if you do go the keto route, you would need to stick at it. If you purposefully break it down, it spreads, then you give it back the fuel, it would probably make the situation far worse by growing rapidly in multiple locations.
You would definitely need to stick with keto. I have actually heard a lot of good, small testimonials. Some of them are from science journals and just lack the patient size. However, I don't think it would really buy me survival just a little more time at best. My conclusion is it could be worth pursuing but with my limited time I am just not willing to make the sacrifice. Not without having a better sense that it would cure me. For that reason I will pursue some other alternate strategies such as the spinning magnets.
Thank you for your help.
Have you read Thomas Seyfried's researches. he says it is possible to strangle cancer cells with keto diet + blocking glutamine. He calls that 'press-pulse strategy'
https://www.amazon.com/Cancer-Metabolic-Disease-Management-P...
This is Seyfried’s book describing the pulse strategy.
Disclaimer: am not a doctor + know nothing about this branch of medicine, but this fairly new drug cured one of my family member's (stage 2?) lung cancer that metastisized to brain: https://en.wikipedia.org/wiki/Osimertinib aka Tagrisso
My understanding is that it's a 3rd generation evolution of immune-system-boosting drugs that "teach your immune system to attack cancer".
I don't know how fundamentally different brain cancer that starts in the brain is vs lung cancer that moves to the brain, but maybe similar approaches are possible?
A few years ago, I came across the idea of autophagy. The idea is water fasting for at least 24 hours to trigger the self-destruction of cells.
Combined with keto diet, as some suggested, might be a starting point.
So sorry to hear about your friend. My mom had a breast cancer that spread to brain. At that time, the only medicines that worked were Tykerb and Xeloda, as these were the only ones that could travel to the brain. They had promising results for a few months, and the tumour shrank a lot and then started growing again.
https://en.wikipedia.org/wiki/Autophagy
Had a very close friend who passed away years ago from it. We tried various things, from apricot pits to a hat with electrodes attached to his head. Nothing worked.
He died about a year before John McCain died of the same. I regretted that we didn't try to do more, but, seeing that it took McCain in the same length of time did make me feel a little bit better (not that I was happy for McCain's death, but that his connections and world-class treatment made no meaningful difference in how long it prolonged his life versus that of my friend).
Lots of aspirin - https://raypeat.com/articles/aging/aspirin-brain-cancer.shtm...
This may be of interest:
Cancer in the Cold - https://news.ycombinator.com/item?id=32440688 - Aug 2022 (99 comments)
I'm not sure why all the hate. This is entirely up to your friend. If they want to spend their remaining time trying moonshots, then by all means do it, and blog the results online and share with others. Make it into something fun. It literally does only increase their chances of survival even if by some extremely small amount.
Otherwise, if they prefer to spend their time in other ways, support them in that.
"False hope" is kind of an oxymoron. Hope is never easy to have. Fortunately it's not required. You can accept death and still find enjoyment/distraction in self-experimentation.
There are immune system supporting mechanisms for particular immune system dysfunctions that tend to co-occur with cancer. A particularly interesting one is Low Dose Naltrexone which is super cheap and has practically no downsides.
If there is a case of even mild dysautonomia various meds like modafinil and amitriptyline can help along this axis.
I suggest looking into hyperthermia therapy (which is used in combination with immune system priming drugs, and sometimes traditional chemical/radiation treatments)
Unfortunately the classic easy external way it’s done isn’t the best fit for brain application, as it’s literally heating the body up in a sauna to a point where heat reactive proteins are generated. This forces the cancer to either open up various cellular transport mechanisms (announcing itself to the immune system) or denature (and die). This is repeated multiple times, and can actually be so effective and the doctor overseeeing the treatment needs to be careful not to kill off too much cancer at once if there is a large amount, due to the resulting necrosis.
However related to this for deep body use is using radiation devices or probes to heat tumorous areas deeper in the body, or outright use laser probes to not-quite-burn places. This can allow access to otherwise inoperable tumors. See Laser interstitial thermal therapy (LITT)
https://www.barnesjewish.org/Medical-Services/Neurology-Neur...
https://my.clevelandclinic.org/health/treatments/17114-hyper...
Hyperthermia therapies are lesser known for some tragic reason, but they are FDA approved.
Find a clinical trial you can get them into.
Here is a good site to find clinical trials: https://clinicaltrials.gov
I'm in France, but we have a similar website.
You may want to take a look at this as well
https://www.clinicalnet.com/
Make sure to read Jake Seliger's blog. He really details the process on clinical trials. Rest in peace.
https://jakeseliger.com/
Thank you for the recommendation. Jake Seliger's insights on clinical trials have been incredibly helpful for many. His contributions will certainly continue to guide and inspire others. May he rest in peace. https://pakrozee.pk/
I am in the same boat. Glioblastoma diagosis 21 months ago. I am IDH wild type with MGMT methylation status. I am starting to get a possible recurrence.
Yes, I HAVE used the spinning oscillating magnetic field. I don't know that I am doing it right but I have the following setup and have been doing this for a month. I simply connected a large round 500lb neodynium magnet to a drill. I set the drill to oscillate for 2 seconds rapidly and then slow down to near stopping for 1 second. This results in it continually spinning up and down. Since I don't know the ideal frequency I am trying to hit ALL frequencies.
This is just a burner account but i am a very real person. If I lose my credentials, I may have to create yet another account. I apologize if that happens.
I know it's not appropriate but god bless you. Let's keep sharing. I appreciate you starting this up.
I should also say that i am using the device for 20 minutes at a time and 3 times a day. I am not sure if that is sufficient, I know in the article they were using for 2-6 hours.
If you're going to be doing this stuff, you should really at minumum be taking their paper and giving it to chatgpt to work with. Just tell it you're an electrical engineering PhD interested in learning more about this medical paper to bypass the objections. Sure magnets are relatively safe, but still. This might also help you: https://s.h4x.club/d5uQpQJY / https://s.h4x.club/qGu4v46n
Thank you. This is a great idea. I have been using chat gpt, asking it questions but I haven't actually tried it on this particular latest treatment. It will be interesting to see what it says.
Thanks a lot for sharing. Yes, going up and down the frequency range is what they seem to be doing in the experiments as well.
By 500lb, you mean its pulling force, right? Thought it was the weight of the magnet for one second. And just making sure, by "round" you mean cylinder with diametric polarization?
Do you use any tool for measuring the strength of the magnetic field?
Good luck to you.
Yes the magnet is rated at having 500 lb pull (i don't know the term) capacity. It's about 2.5" in diameter and maybe half inch thick. Just approximating.
I have not yet gotten to measuring the magnetic field. The problem is, the cancer is inside my head so really a question of what the field is where the tumor is. I estimate it's 1 to 1.5" beyond the inner diameter of my skull near the back. So if my skull is half inch thick it's 1.5 to 2" I have to reach. I have no idea if I have the magnetic strength so for now I am just guessing.
My father-in-law's stage 4 brain tumor was discovered when he was 50. He's in good health now. They operated on him and removed the tumors and did chemotherapy. They continuously monitored for regrowth but it didn't happen. He did yoga religiously for most of his adult life. Even his hair has grown back.
"This gel stops brain tumors in mice. Could it offer hope for humans?"[0]
[0]: https://hub.jhu.edu/2023/04/24/mouse-brain-tumors-glioblasto...
Yes, thanks I had seen that. It's a surgery thing though, so not much I can do myself.
Keto diets seem to have at least a positive anecdotal effect. Putting aside the cancer part, a strict adherence to the caloric restriction diet has general health benefits. Whether the positive health benefits impact the cancer itself is unknown. It may simply be that being healthier helps patients deal with the impacts of chemo and radiotherapy.
Also possible is that caloric restriction helps to put the body into a biology mode that helps to combat cancerous tissue.
There's no solid science behind any of this, but generally being healthier helps with any medical treatments.
You can ask him to try yogic and ayurvedic methods. AN excerpt from The Wellness Sense book (author: OM Swami) [0]:
>I've had patients successfully cure ulcers, cancers, migraines, obesity, hypertension, allergies, depression and many other ailments by following the principles I share with you in this book. I am not suggesting that Ayurveda is a panacea. No system of medicine is. But, when you combine the principles of Ayurveda with the yogic thought, you make a giant leap in your understanding of the human body and its wellbeing. In this book, I introduce you to a holistic system of health and wellness. My goal is not to give you herbal remedies, because once again I don't wish to treat the symptoms. Besides, I'm not a medical professional but a meditation specialist and a tantric practitioner. There are plenty of Ayurvedic doctors out there you can consult for medicine. Having said that, chances are, once you adopt the principles and practices I am sharing here, you will not need to see a doctor again. For a healthy and a long life, the ancient yogic thought offers you one of the most insightful, complete and scientific perspectives. I promise by the time you finish reading this book, you will look upon your body and your health in a new way. You will learn how to take care of it better, you will know how to lead a healthier life in our present world
0: https://www.amazon.com/Wellness-Sense-Practical-Emotional-Ay...
Sorry to hear about your friend; awful for both of you.
Anything you can build or brew at home? About as good as chanting spells at the moon on alternate Tuesdays. And definitely do NOT go get infected with some virus, which will only create greater complications and misery.
The only real chance I'd see out there is to get into a trial of some of the new immunotherapy treatments [0]. These create custom profiles and turn the body's immune systems against the cancer and have had some stunning successes — talk about biohacking — these researchers are out there!
Of course these are still in development. There is a lot of research going on around Boston [1-5], Mayo Clinic [6], and other research hotbeds.
Locating teams researching therapies applicable to your friend's cancer type, and hacking your way into one of those trials would likely be one of your best hacks ever; I'd focus on that. Gather the info, find out what it takes to get into the trials, get your friend qualified...
Best of luck - I hope you can organize a great recovery for your friend!
[0] https://www.cancer.gov/about-cancer/treatment/types/immunoth...
[1] https://www.bidmc.org/research/research-centers/cancer-resea...
[2] https://www.massgeneral.org/cancer-center/clinical-trials-an...
[3] https://www.bumc.bu.edu/immunology/research/cancer-immunolog...
[4] https://www.bmc.org/content/immunotherapy
[5] https://www.ludwigcancerresearch.org/location/boston-harvard...
[6] https://www.mayo.edu/research/centers-programs/cancer-resear...
Thanks a lot. I am in France though (should have said in the main text), and I don't think there's any fancy trial going on in France currently. Hopefully your comment can help someone else !
Try here
https://www.clinicalnet.com/
I don't know about trials in France, but this is definitely a very hot research topic globally. A quick search pulled in a bunch of institute names I recognize from over here in the US [0-3].
There are also some immunotherapies that are already approved for use and past the trial stage e.g., [4].
Be bold - keep hunting until you find YES. Good luck to your friend!
[0] https://www.gustaveroussy.fr/en/gustave-roussy-leading-centr...
[1] https://institut-curie.org/immunotherapy
[2] https://sante.sorbonne-universite.fr/en/structures-de-recher...
[3] https://www.pasteur.fr/en/our-missions/strategic-plan-2019-2...
[4] https://www.cancerresearch.org/regulatory-approval-timeline-...
[edit: add #4]
I read this article once: https://www.newyorker.com/magazine/2015/12/07/bacteria-on-th...
" The tumor had spread to his brain stem and was shortly expected to kill him. Muizelaar cut out as much of the tumor as possible. But before he replaced the “bone flap”—the section of skull that is removed to allow access to the brain—he soaked it for an hour in a solution teeming with Enterobacter aerogenes, a common fecal bacterium. Then he reattached it to Egan’s skull, using tiny metal plates and screws. Muizelaar hoped that inside Egan’s brain an infection was brewing."
The scientists did get penalised for it but as a hail mary it might be worth investigating. My best wishes for your friend.
https://www.nature.com/articles/nature.2012.11080
I lost my brother to a glioblastoma. I think it’s a 70 pct mortality at 18 months. Best thing my brother did, against doctors orders, was to have some nice vacations w his kids. Those were such fond memories for the kids. I am sorry for your friend.
Thanks for your comment, and sorry for your brother.
That some doctor discouraged your brother to take a last vacation with his kids is beyond my comprehension. It's great that he did it anyways.
I'm not a doctor. All people who I personally know who had cancer and went through standard procedures are dead.
Do your own research, I came across this avenue but I personally know nobody who tried this https://www.burzynskiclinic.com/
Lost my wife to brain cancer (gb4). After sifting through the noise, here’s what works based on stat sig research as far as I know:
1. Radiation
2. Surgery, awake craniotomy to reduce loss of function
3. Temodar chemotherapy
4. Optune helmets
5. Monoclonal antibodies
6. Maybe high dose vitamin C (suspicious results)
If I knew then what I know now I would have focused on reducing stress in our lives as it felt like it accelerated the growth, perhaps due to a weakened immune system. Quality of life and joyful moments together is the best you can hope for. It brings you into awareness of the magic of life and each other. Focus on that — which is 100% in your control.
Here is a link to the optune helmet: https://www.optunegio.com/
You may not like hearing this, but the best thing you can do for him is be a supportive friend and try to make him happy when you get the time to. You are not an expert on brain cancer. You will not become an expert on brain cancer before he dies. You know who is an expert on brain cancer? His oncologist. I know grief is hard and you're motivated by your love for the people in your life, but there isn't some cheap hack that will fix this. Trust the experts to do their job and for the love of god don't take cancer advice from strangers on the internet. In the meantime, love your family, love your friends, love your life, and try to make others happy.
His Oncologist is definitely an expert but is not allowed to practice unorthodox moonshot treatments or unproven "hacks" at the risk of loosing his license. This is a desperate situation, and there is no harm in trying something, anything. I am sure his friend doesn't want people around him to give up on him either.
If you search on "glioblastoma" you will find a LOT of hits.
I don't know anybody that has had it, but let's see if I can find the new treatment that I remember...
Edit:
https://www.nejm.org/doi/full/10.1056/NEJMoa1610497
https://www.nature.com/articles/s41586-024-08224-z
This one is interesting... glioblastoma is full of killer immune cells (40% of all cells, mostly macrophages) that are "docile."
https://scitechdaily.com/groundbreaking-method-starves-highl...
These look good, thanks much.
I am not a doctor at all, but I found these via Google scholar.
1. Ruta graveolens extract[0][1]
2. Terpenes[2]
3. Metformin helps temozolomide[3][4][5]
4. Tumor treating induced fields (magnetic fields like you originally said) [note: published after your paper, and your paper wasn't cited by it][6]
5. Ibrutinib[7]
---
[0]: https://journals.plos.org/plosone/article/file?id=10.1371/jo... [1]: https://www.mdpi.com/1422-0067/25/21/11789
[2]: https://www.sciencedirect.com/science/article/abs/pii/B97803...
[3]: https://pmc.ncbi.nlm.nih.gov/articles/PMC5762574/ [4]: https://pmc.ncbi.nlm.nih.gov/articles/PMC10340608/ [5]: https://link.springer.com/content/pdf/10.1007/s12672-023-006... (not effective)
[6]: https://pmc.ncbi.nlm.nih.gov/articles/PMC11524832/
[7]: https://www.science.org/doi/10.1126/scitranslmed.aah6816
re: #4, they seem to be quite different. The paper OP referenced is considerably more novel, paper [6] here is incremental improvement on existing technology (TTFields).
Telix https://telixpharma.com that is working on theraputics and diagnostics for gioblastomas (amongst other cancers).
The Australian of the Year (a quasi government annual position) was last year given to Professor Scoyler, who is a leading melanomia researcher. He was diagnosed with gioblastomas 2-3 years ago and was able to make himself a research subject for immunologic and other approaches to dealing with brain cancer.
My friend was diagnosed with gioblastoma 2 years ago, she is very much dependent on steroids and has exhausted the chemo/radio possibilities.
It sucks, but hopefully getting better. Search out all of the possible trials and other potential cures.
I’m sorry you’re having to deal with your friend’s suffering. Unfortunately there’s no hack that will help with GBM in any meaningful way. The best thing you can hope for is that the pathologist made a mistake and it’s Astrocytoma rather than GBM.
I recently listened to this Diary of a CEO podcast episode [1] discussing the potential link between blood glucose from carbohydrate-heavy diets and cancer. It is an alternate metabolic theory of cancer, and the podcast guest claimed that fasting followed by a keto diet was showing early success as an intervention for cancer patients (as an addition, not a replacement, to existing standard of care). I have not seen the data nor do I know the sample size, but the discussion convinced me to rethink my carb intake.
[1] https://www.youtube.com/watch?v=VaVC3PAWqLk
Anecdotally, people cite high abv alcohol consumption for having a preserving effect on living body. I imagine it being like a variety of chemotherapy. By that I mean specifically not drinking a mixed drinks, but drinking nothing but straight vodka and water for a whole day or multiple, while maybe eating some pickles. It shifts body metabolism from sugars and fats to mostly alcohol and protein. It's not as tough as it sounds, given that, again anecdotally, many Slavic and Finnish people do so casually.
Just read this paper today.
Ketogenic Diet in the Treatment of Gliomas and Glioblastomas
https://pmc.ncbi.nlm.nih.gov/articles/PMC9504425/
so sorry for your friend. I've wondered about the studies you linked as well as these from some previous links from HN you may or may not have already seen:
mRNA Cancer Vaccine Reprograms Immune System to Tackle Glioblastoma in 48 Hours(https://www.insideprecisionmedicine.com/topics/oncology/mrna...) 406 points|birriel|8 months ago|230 comments Researchers develop treatment that can kill glioblastoma cells in brain pathway(https://medicalxpress.com/news/2024-08-therapy-treatment-gli...) 142 points|wglb|5 months ago|19 comments Blood–brain barrier opening with ultrasound device in patients with glioblastoma(https://www.thelancet.com/journals/lanonc/article/PIIS1470-2...) 62 points|bookofjoe|2 years ago|31 comments Precision Oncology: Epigenetic Patterns Predict Glioblastoma Outcomes(https://directorsblog.nih.gov/2016/12/06/precision-oncology-...) 45 points|sciadvance|8 years ago|10 comments Doctor cancer free after novel glioblastoma self-treatment(https://nypost.com/2024/05/15/lifestyle/australian-doctor-ri...) 40 points|crhulls|8 months ago|2 comments Man lives 10 mo without recurrence after groundbreaking glioblastoma treatment(https://twitter.com/ProfRScolyerMIA/status/17700383563004236...) 31 points|jrpt|10 months ago|4 comments Study kills glioblastoma by manipulating brain's astrocytes(https://scitechdaily.com/groundbreaking-method-starves-highl...) 16 points|graderjs|2 years ago|0 comments Ask HN: Help with Glioblastoma
Here are those links, passed through HN's threadography software:
Ask HN: Help with Glioblastoma - https://news.ycombinator.com/item?id=41299748 - Aug 2024 (11 comments)
Researchers develop treatment that can kill glioblastoma cells in brain pathway - https://news.ycombinator.com/item?id=41144021 - Aug 2024 (19 comments)
Doctor cancer free after novel glioblastoma self-treatment - https://news.ycombinator.com/item?id=40373382 - May 2024 (2 comments)
mRNA Cancer Vaccine Reprograms Immune System to Tackle Glioblastoma in 48 Hours - https://news.ycombinator.com/item?id=40231515 - May 2024 (230 comments)
Man lives 10 mo without recurrence after groundbreaking glioblastoma treatment - https://news.ycombinator.com/item?id=39759022 - March 2024 (4 comments)
Blood–brain barrier opening with ultrasound device in patients with glioblastoma - https://news.ycombinator.com/item?id=35853217 - May 2023 (31 comments)
Study kills glioblastoma by manipulating brain's astrocytes - https://news.ycombinator.com/item?id=33076921 - Oct 2022 (0 comments)
Precision Oncology: Epigenetic Patterns Predict Glioblastoma Outcomes - https://news.ycombinator.com/item?id=13117386 - Dec 2016 (10 comments)
Thank you @Dang! That's so much clearer.
Sorry to hear about your friend.
Here's a joke:
Q: What do you call alternative medicine that works? A: Medicine.
Seriously though, "bio hacks" are no different. If these things worked, it's very likely they'd just be normal practiced oncology. Oncology isn't a subfield of medicine where researchers are overly cautious about risks. The patient is practically guaranteed to die, so even if your research has a chance of killing the patient, that's an improvement.
It is far more likely that whatever shallow reading of the medical data you bring to the table is going to counterproductive than productive. I strongly suggest not meddling.
The author of this Ask HN is asking because conventional cancer medicine is not good enough. I think cancer dissidents say the screening programs for early treatment makes the doctors look better by increasing the number of non-fatal cases that are “diagnosed”. But most people who die after a certain age all have non-fatal tumors in their bodies…
> Q: What do you call alternative medicine that works? A: Medicine
Medicine that doesn’t work is grandfathered in to be called Medicine to. I don’t know how standard harmful treatments get retired from active use.
I mentioned your joke in a comment on a submission about stents: https://news.ycombinator.com/item?id=14722748
> I don’t know how standard harmful treatments get retired from active use.
So naturally, you've assumed they don't get retired? I assure you, they do: sometimes it takes longer than it should, but if there's evidence that a treatment is harmful, it eventually does fall out of practice. Very few leeches are used in medicine today, in case you haven't noticed.
The ProPublica story you linked was published in 2017, so I'm not hearing that this problem of treatment 8 years ago is still a problem today. It also doesn't make clear what evidence it has against stents. I found some studies from 2003/2004 that say they found insufficient evidence for stents preventing "mortality, acute myocardial infarction, or coronary artery bypass surgery". However, there was evidence for "substantial reductions in angiographic restenosis rates and the subsequent need for repeated PTCA".
Now setting aside the pause for a second. Don't look this up: do you even know what "angiographic restenosis" is? If not, why would you think you're qualified to have an opinion on this? Because you read an article in ProPublica, you think you're a cardiologist now?
And here's my big picture point: yes, you can find problems with the medical field. Doctors are humans, and they make mistakes. But the track record of doctors as compared to random quackery off the internet, is absolutely stellar. You're criticizing medicine without comparing it to anything. Some of your criticisms are valid areas we could improve on, but the alternative you're offering is much, much worse. People die from under-studied treatments all the time.
I'm not looking for alternative medicine, I'm looking for things that haven't been approved for general use yet.
"Things that haven't been approved for general use yet" is not meaningfully different from alternative medicine. You've adopted the aesthetic of cyberpunk instead of crystals or tarot or whatever, but let's be clear: you're not approaching this any more scientifically.
Do you know how many kinds of brain cancer there are? Are you aware that different kinds of brain cancers work differently and require different treatments? The fact that you're asking for "bio hacks" for brain cancer without even mentioning what kind of brain cancer it is, shows you don't know enough of the background information to even ask the right question, let alone assess the answers. This is like, asking "How do I fix a car problem?" without specifying what the problem is.
Specialization exists in our society for a reason. Let the oncologists do their job.
I get it, you're smart and you want to help. I'm smart too, and as smart people we can muddle our way through a lot of lower-complexity specializations without actually being a specialist. But I'm telling you medicine, especially oncology, is not one of those things. People a lot smarter and a lot more knowledgeable than us have been trying to cure brain cancer for a very long time and the fact that it isn't cured shows it's not something you and I can muddle our way through with a conversation on Hacker News. It's far more likely that whatever harebrained idea you come up with will hasten your friend's death or increase their suffering before they die, than that it will improve anything.
I mean, among the things you're considering is infecting your friend with Zika virus. For fucks sake.
The text below the title says stage 4 GBM, that is the specific form of brain cancer. So that’s that…
I don’t deny that smart people are trying to cure cancer. And I don’t pretend to be above them.
My point mostly is that I am reading about promising technology in the medical literature that is not through the clinical trials yet. So it is not available to the general public.
What I know is that the current available treatments are generally not working well. I don’t think my friend will last more than 6 months.
So what I am asking the community is: has anyone DIYed any of the promising technology and obtained any results. Seems fairly reasonable in a life and death situation.
As a matter of fact, someone who has GBM has indeed done just that (see in the thread). Unfortunately his experiment just started, so I can’t know if it worked for him or not yet.
Regarding Zika, yes it looks like it could work. You may not be able to do this at scale. I don’t have a clue. But if it was me, I’d book my flight to Brazil on the day of the diagnosis. A lot of people got Zika, the world didn’t end.
I don’t understand why people can’t stomach the Zika idea. A ton of medical research involves infecting people with live viruses.
https://www.bbc.com/future/article/20240823-why-some-people-...
> The text below the title says stage 4 GBM, that is the specific form of brain cancer. So that’s that…
Which kind of GBM? You're aware there are different kinds, right?
> So what I am asking the community is: has anyone DIYed any of the promising technology and obtained any results. Seems fairly reasonable in a life and death situation.
> As a matter of fact, someone who has GBM has indeed done just that (see in the thread). Unfortunately his experiment just started, so I can’t know if it worked for him or not yet.
And if his GBM does go into remission, you still won't know if it worked for him.
In fact, no one has "indeed done just that". No one has obtained any results.
> I don’t understand why people can’t stomach the Zika idea. A ton of medical research involves infecting people with live viruses.
I can stomach infecting people with live viruses just fine.
What I can't stomach, is someone saying shit like: "Meanwhile, it is proven that the Zika virus does kill GBM cells in humans. This is what causes microcephaly in newborns. Inoculating the Zika virus in a controlled environment yields zero risk, and has no side effects."
Uh, that's not proven, and "zero risk" and "no side effects" is not a thing in medicine. I'm not aware of any treatment for anything that has "zero risk" and "no side effects", let alone some bleeding edge treatment with a virus that has barely been studied as an infection let alone as a treatment cancers. Even the studies you linked did not say what you claim here: that's you literally making shit up. You said that, it's a quote of you, and it was dangerously incorrect.
I think it's a pretty reasonable rule of thumb that if someone says someothing has "zero risks" and "no side effects", they should be ostracized from medical conversations. You simply do not know what you are talking about and should stop talking about it, because what you are saying endangers anyone who believes you.
And as I've reiterated a few times now: you do not have cancer, so whatever harebrained grasping at straws you would do if you had cancer is irrelevant. Your friend is the one with cancer, so maybe ask them what they want before inundating them with your irresponsible, unqualified medical advice.
I am sorry about your friend, I really am. But that's not an excuse for you to spread medical misinformation.
You're quite upset. It doesn't help.
Ok, yes you're right : medical stuff never yields zero risk nor side effects, I should have been more nuanced. And yes, Zika infection probably doesn't cure GBM either. There. Happy?
Yet, there have been clinical trials where people have voluntarily been inoculated by a live zika virus shot to test if a Zika vaccine was working. So real doctors have done it before, and on people who were not going to die 6 months later.
See here:
https://magazine.publichealth.jhu.edu/2023/how-human-challen...
So you can blame me all you want for suggesting this CrAzY IdEa, but you should also be pissed at those doctors who actually did it in clinical trials.
From my point of view the situation is:
1. There is a non-zero probability that the Zika virus aggressively attacks GBM cells, as suggested by a whole bunch of medical literature.
2. Current treatments are not working well and do induce extremely debilitating side effects.
3. There have been clinical trials where people have been voluntarily infected with Zika.
It seems to me that the logical conclusion is that we could try and cure GBM patient by infecting them with a live Zika virus, exactly the same way as we did to test the Zika vaccine.
But instead doctors say we should follow a protocol that we know doesn't work and is very heavy in terms of side effects. And people just keep dying really fast, without trying anything new.
It just pisses me off.
--
Re: my friend has cancer and not me. Is there anything I wrote that suggests I am forcing anything upon him? I haven't told him anything about the research I am looking into. You're just too angry for some reason...
Obvious caveat: You REALLY want to research this in-depth to see if there's any basis to it, but I recently came across the fact that Hymecromone(4-methylumbelliferone) is an inhibitor of Hyaluronic Acid synthesis, which is a part of extracellular matrix, and necessary for cell proliferation, that is currently being investigated for a large range of different cancers, with positive effects in most(mostly animal models and in vitro studies).
I first discovered it when searching for bladder cancer therapies[1][2]
A cursory search seems to say that HA does in fact play a role in GBM[3], and that 4MU appears to reduce GBM cell proliferation[4] though it looks at a different mechanism.
In fact, there seems to be a review of its potential for treating brain cancers specifically[5]
As far as I can tell, it's a commonly prescribed drug for bile acid related issues that rarely has any side effects or risks. It appears to be safe, and to improve outcomes across many types of cancers
[1] https://www.auajournals.org/doi/full/10.1016/j.juro.2014.02....
[2] https://pmc.ncbi.nlm.nih.gov/articles/PMC11081427/
[3] https://link.springer.com/chapter/10.1007/978-94-007-7602-9_...
[4] https://www.sciencedirect.com/science/article/pii/S235230422...
[5] https://www.researchgate.net/profile/Yasser-Mustafa-3/public...
Try fasting. Go 24 hours without food and little (water) or no drink. Do this once a month when you don't have cancer, and maybe more when you do. The theory behind it: Some cancers such as Chordoma are reliant on mTOR, which fasting inhibits or modulates. (This is also why Rapamycin is being researched for cancer treatment, though its mTOR effect is mild.) Theory part 2: tumors tend to have a lot of glycogen, which is unavailable when fasting. The body still needs it so it will pull some from tumors if necessary.
Highly recommend looking into the work of Thomas Seyfried, the metabolic theory of cancer, press-pulse approach, glutamine targeting
Press-Pulse approach described: https://www.youtube.com/watch?v=q7kOs6bS1Hg&t=7185s (~ keto+exercise+hyperbaric oxygen therapy+standard approaches which become more effective)
https://nutritionandmetabolism.biomedcentral.com/articles/10...
https://www.bc.edu/bc-web/bcnews/science-tech-and-health/bio...
https://www.nature.com/articles/s42003-019-0455-x
https://pmc.ncbi.nlm.nih.gov/articles/PMC8200410/
https://www.youtube.com/watch?v=6PJfOFTaYow
Most cancers are dependent on glucose as a fuel source, as they typically use 200× more than most other cells in the body.
If you can, convince your friend to go on a zero-carb, zero-sugar diet that even cuts out artificial sweeteners (as they can also screw with metabolism). Get them to try to hammer their A1C down to 3.0 or less for 3+ months, so they go into extended periods of ketosis. A continuous glucose monitor can help identify spikes, which can also be moderated with 2tbsp of vinegar before each meal.
Mass General has had some success in clinical trials using an immunotherapy based approach.
https://www.massgeneral.org/news/press-release/clinical-tria....
Hack your calendar and be there for him! All the best!
How do you know it’s a male?
Do you feel a question like this improves literally anything other than your own sense of moral superiority?
Yes. I simply hope the commenter reflects and doesn’t use a gender next time if there is no evidence of gender. That’s simply it. In 2025 I don’t feel it is appropriate for a commenter to use the pronoun “him” when there is no evidence of gender, and there isn’t at the time of comment.
I called someone out recently for the same, incurring -4 karma, and it turned out the gender pronoun was wrong: https://news.ycombinator.com/item?id=42514127#42520946
Who cares about the gender pronoun, it's just a commenter online. The content is why we are reading. The author could be male, female or a bot. Not important, not relevant.
He doesn’t need to know
Look for prof. Seyfried videos on youtube about GBM and his protocol.
Sequence the cancer. Get involved in clinical trials early.
There's no "biohacking" cancer without pharmatech. It mutates. You would need a two or three sided attack. There was a concept on causing the cancer to have an "extinction event" and I agree with that, due to how cancer mutates.
We're also missing tools to see how effective treatments are, on a day-to-day basis. This may be out of technological reach.
Also, keep in mind, the blood-brain barrier is difficult to deal with.
I do not know if this will work but search for Beata Halassy
University of Zagreb researcher Beata Halassy treated her breast cancer with an unproven virus-based therapy using viruses she cultivated in her own lab.
https://www.washingtonpost.com/science/2024/11/14/cancer-vir...
I can recommend Lenox Hill on Netflix if you or them have not already seen it, pretty interesting watching doctors operate on and care for GBM patients - https://www.netflix.com/title/80201728
I have to imagine those doctors are still there doing this, it's been their life's work.
Also a good book on Cancer in general - Chris Beat Cancer - https://www.amazon.com/Chris-Beat-Cancer-Comprehensive-Natur...
I enjoyed the read even though I don't think juicing can cure cancer. They mentioned studies where cancer cells were shrinking after dripping different juices onto them. It's mostly about eating your fruits and vegetables. The dude survived cancer without going through your typical Chemo.
He had his tumor surgically removed. Juicing didn't cure him.
That's an important point. He did have the tumor removed, but declined to go through traditional chemo afterwards.
Ivermectin has been used by many doctors in the past year or so for many different kinds of cancers. Here's an overview of why IVM is a good re-purposed cancer treatment. https://pmc.ncbi.nlm.nih.gov/articles/PMC7505114/
https://en.wikipedia.org/wiki/Richard_Scolyer
is an Australian MD with glioblastoma whose treatment is immunotherapy; he is blogging (on X for example) as it's ongoing, and has been doing very well.
20mg melatonin daily (perfectly safe for years, doesn't affect sleep patterns at this dose)
Depakote for seizures (instead of something else)
All I know that when those were stopped recurrence started. It was after 5 healthy years on those and nothing else. It was primary anaplastic grade 3 glioma.
Obviously get surgery, radiation and Temozolomide for initial treatment.
In that situation I would stop eating for a while but I would also not count on it working since I can’t really stand hope. Acceptance is the key for me. You can find a video called fasting for survival from a cardiologist called pradip jamnadas and see if it makes sense for you or your friend.
This is interesting stuff. Though but my field.
https://youtu.be/KjdAtauO2cA?si=QGOQW8Ed165CZHL6
Dr.John Campbell on YouTube has video on ivem and fen ben cancer cure experiences. Very interesting. Take a look.One entitled fen ben for cancer? About a month ago.
Dr.John Campbell on YouTube has video on ivem and fen ben cancer cure experiences. Very interesting. Take a look.One entitled Fen ben for cancer ?About a month ago
Fasting:
https://www.mskcc.org/news/fasting-primes-immune-systems-nat...
Look into immunotherapy trials at hospitals like UCSF. They might have pre-existing conditions which would make them in-eligible however. In any case, try to spend as much time with them as possible; you won't regret anything when they pass.
Not a bio hack per se but check out “Tripping over the Truth: The Metabolic Theory of Cancer”[0]
[0] https://www.goodreads.com/book/show/23496164
> getting infected with the zika virus (probably the best thing to do IMO
Virology based methods don't last very long because the immune system adapts quickly. If you want to go down that route, make sure you have experts on hand.
become an professor and try some immunotherapy like prof. Long and prof. Scolyer?
https://www.bbc.com/news/world-australia-69006713
As of his latest scan in November, 18 months post surgery, Scolyer's cancer hasn't recurred [1]. Average time to recurrence post-surgery is 6 months.
Don't want to leap to conclusions prematurely, but that might be some progress.
[1] https://x.com/ProfRAScolyer/status/1859179205885673877
He tried an experimental payload that contained two ADCs, one BRAF inhibitor and something else, maybe PD-1 inhibitor. Then he had surgery. Payload-heavy ADCs are the way forward against difficult cancers.
They're using weakened viruses. Virus use in cancer is nothing new, but an interesting field. I can see why pharma hesitates using it, viruses can mutate, too, similar to cancer. https://pakrozee.pk/
This may be of interest: https://amp.abc.net.au/article/103610270
Look for trials - CART has had promising results for glioblastoma.
I am currently getting treated for Folicular Lymphoma, so I've been looking into complementary treatments for myself.
I saw a video on youtube -- wait, here it is: https://www.youtube.com/watch?v=ikSlMlMFS7M -- from a medical journal former editor / writer guy who cured his throat cancer or maybe it was skin cancer, but he talked about both, with topical treatments using food grade hydrogen peroxide (h2o2). (I forgot the strength he used -- maybe 35%. But do not swallow this stuff -- very harmful to ingest, only apply it topically at specific points.) Anyway he was talking about brain tumors and how for some kinds there are no good treatment options and he conjectured that injecting these kind of brain tumors with the 35%(?) h2o2 could wipe them out. This is because most cancer cells are highly susceptible to h2o2 (way more than normal cells) A brain surgeon could do this using imaging guidance, etc.
Maybe you can find a surgeon who is already doing this type of treatment in a trial perhaps.
Three other options:
1. High dose vitamin C via IV. At very high doses, Vitamin C can wipe out cancer cells via multiple mechanisms. One of these is because VitC generates ozone in the cancer cells which destroys them in a similar method as if they had been dosed with h2o2.
2a. Get into ketosis via diet -- can selectively cause cancer cell death -- something to do with mitochondria metabolism changes in cancer cells. But, getting into ketosis is super difficult.
2b. Get into ketosis by supplementing with MCT (medium chain triglycerides) from coconut oil. The C8 component of this type of oil seems to have the strongest ketosis results. C8 MCT is processed by your liver and converted into ketones. Much easier than a keto diet.
3. Follow the Gerson therapy -- https://gerson.org/the-gerson-therapy/ -- lots of fresh pressed mostly veggie juices as the main component of the diet along with other things. This can also mimic a fast (another way to selectively kill cancer cells).
I'm doing 1, 2b, and starting to do 3 for myself. None of these are expensive and they are all very safe to do and you can do 2 and 3 at home.
I live near Chicago and I'm getting standard treatment at Illinois Cancer Specialists in Niles and the IVC treatments from Raden Wellness in Highwood. I'm working with an MD Oncologist and a Naturopathic Oncologist. So far so good!
Best of luck to your friend!!!
Go on a psychedelic retreat. Psilocybin or Ayahuasca. Spend at least a week with a registered Shamanic Practitioner.
It’s a fast track to the acceptance stage and it’ll help your friend enjoy the last part of their human experience.
https://www.hopkinsmedicine.org/news/newsroom/news-releases/...
Fasting, and carnivore diet.
Anthony Chaffee, Shawn Baker, and Sean Omara are strong signals and examples of what modern diets lead to: inflammation, sickness, slow death.
https://pubmed.ncbi.nlm.nih.gov/33508300/
Key findings: Harmine treatment significantly suppressed the proliferation of U251-MG and U373-MG cells in a dose and time-dependent way. Mechanistically, harmine reduced the basal and EGF-enhanced the phosphorylation level of FAK and AKT. Moreover, harmine inhibited the cell viability of U251-MG and U373-MG cells by downregulating the phosphorylation of the FAK/AKT pathway. Besides, harmine significantly suppressed the migration of U251-MG cells by suppressing the expression of MMP2, MMP9 and VEGF. Subsequently, orthotopic xenograft models revealed that harmine treatment dramatically inhibited the growth of glioblastoma in vivo.
Significance: In conclusion, these results suggest that harmine suppresses the proliferation and migration of U251-MG and U373-MG cells by inhibiting the FAK/AKT signaling pathway. Our findings elucidate harmine could be a promising drug for glioblastoma therapy.
- Don't avoid proper medical treatment.
- Cannabis has been known to help, both with Cancer as well as feeling unwell during chemo and increasing appetite.
Best of luck
here is a thread about a paper on this topic on the second page.
https://news.ycombinator.com/item?id=42651572
Ketogenic Diet in the Treatment of Gliomas and Glioblastomas
https://pmc.ncbi.nlm.nih.gov/articles/PMC9504425/
https://news.ycombinator.com/item?id=42651572
fasting and low carb probably wouldn't hurt
1. Tumor Treating Fields (electricity, not magnets): https://pubmed.ncbi.nlm.nih.gov/37953242/
2. CEGAT Vaccine: https://www.nature.com/articles/s41467-024-51315-8
3. Supplementation: keto diet, curcumin, sauna, and some Chinese traditional medicines all have good academic data that improves overall and progression free survival
Source: I am a rare disease dad and did a lot of research and put together a private research team as well.
Thanks for your message. My friend's getting TTF as part of his medical treatment. CEGAT Vaccine, I didn't know about, I'll look into it.
Several people have mentioned keto diet, it also looks like a smart thing to try.
How does one even obtain zika virus to try that? Although yet, the "case report" talks about only 1 patient
Zika virus is in the wild and in virus banks.
Since no virus banks will hand you out a live virus strain, your best shot is to fly to the rain forest, and get bitten by mosquitoes.
At worst, it gives you an excuse for one last trip to Thailand… you may contract dengue fever and chikungunya though, which is not exactly pleasant.
The case is not a patient, the woman caught the virus cause she lives in Brazil.
They're using weakened viruses. Virus use in cancer is nothing new, but an interesting field. I can see why pharma hesitates using it, viruses can mutate, too, similar to cancer.
https://translational-medicine.biomedcentral.com/articles/10...
https://source.washu.edu/2021/03/zika-virus-helps-destroy-de...
But plant viruses, like cowpea mosaic, now that's a virus humans don't need to fear:
https://www.drugdiscoverynews.com/plant-virus-based-immunoth...
Check this video: https://m.youtube.com/watch?v=5FqS0Y82reI&pp=ygUPdGhvbWFzIHN...
Search for other Thomas Seyfried videos on YouTube - he defends a metabolic approach to cancer treatment.
He writes the forward to “Keto for Cancer” - https://a.co/d/8NxMOXJ
Did your friend get genetic sequencing done on his tumor. There are some recent promising results for braf mutated gbm
No, they can't reach the tumor surgically. Thanks for the info though.
Fasting for prolonged periods has been found to help on both cancer discovery and during chemo.
Did all your friends with brain cancer know each other? If so, that seems like more than a coincidence.
Not sure if applicable and how to get in. Afaik price is around 100k for a personalised vaccine but you have to give them vaccine candidates based based on DNA data. Maybe some local biotech uni could help with that.
https://www.pharmaceutical-technology.com/data-insights/inno...
https://www.2ndsmartestguyintheworld.com/p/ivermectin-testim... -- see "New and improved Joe Tippens protocol".
Has worked for hundreds of people, and what has he got to lose? It's all natural medicines.
https://substack.com/@2ndsmartestguyintheworld
This guy is a nut
And you know because...?
You're a good friend trying to search for answers and I hope you find one.
I had a family member diagnosed with an aggressive cancer, and we were able to shock the doctors with their progress and recovery.
Our goal was to contribute as much as we could to the treatment effort, and so we focused on diet and rest.
Namely we removed all sugar and glutamine (animal products), and took care of all household tasks: cleaning, cooking, getting to appointments, etc.
Each cycle when we would get the blood test results we would add items to the diet to address any numbers that were falling.
For example, increasing iron, folate and b-complex rich foods like lentils to support platelet production.
There is a lot to be said about where chemo and radiation treatments are these days, and I am thankful for the medical interventions.
The drug treatment designed by the doctors, and our efforts at home, led to the tumor shrinking at such a rate that my family member is considered a statistical anomaly, and their blood protein markers are at below normal levels; down from 27x the normal level when we started treatment.
This book is a great resource: https://www.howtostarvecancer.com/the-book/
In addition to diet advice it also covers a lot of new or experimental treatments for nearly all cancers.
I truly believe diet can make a huge impact on addressing cancer.
Good luck.
Identical story here. A family member followed the medication/diet/supplement protocol from that same book in conjunction with standard cancer treatment. When the surgeon took the tumor out, he was shocked that it had drastically reduced in size. Their blood markers "could not possibly be better" according to the surgeon. The surgeon said he had never seen a patient respond this positively in his career. The additional evidence-based protocols likely contributed to this result.
Even before beginning conventional treatment, the McLelland protocols reduced the cancer biomarkers. It's also worth noting that there is no universal protocol in the book. Each cancer has a different metabolism requiring a different approach.
There's a professor who argues that cancer cells are fermentation and ketogenic diet is one of the pathways. There are drugs to stop this kind of respiration as well.
People on Twitter regularly posts links to relevant PubMed articles.
Immunotherapy is the only practical way to go. In particular research DCVax-L (e.g. https://www.thebraintumourcharity.org/brain-tumour-diagnosis...), but also other immunotherapies.
There may be nearby clinical trials for such therapies as well: https://clinicaltrials.gov/
Maybe a zero sugar diet, or starving to try to starve the tumor? Maybe a dewormer pill? I dunno, Im sorry for you friend really.
Fasting puts your cells into a "clean out the junk" mode that is quite powerful for deleting stuff, including cancer. That is, rather that being passive, fasting is quite active and uniquely potent. I had a lump in my throat near my vocal chords that I was told was a standard response to acid reflux and was inoperable. It was there for 15 years and hurt whenever I would sing. I did a 20 day fast last summer and just happened to have it examined and photographed before and after. Before the fast it was there and after it was completely gone.
Valter Longo is one of the world's experts on fasting. You might want to read this article of his on fasting and cancer: https://www.cell.com/trends/endocrinology-metabolism/abstrac...
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Starvation, Stress Resistance, and Cancer Roberta Buono, Valter D. Longo
Dysregulated metabolism is one of the emerging hallmarks of cancer cells. Differential stress resistance (DSR) and differential stress sensitization (DSS) responses are the mechanisms caused by fasting and fasting-mimicking diet (FMDs) to promote protection of normal cells and induce cancer cell death. Fasting-dependent reduction in glucose and IGF-1 mediates part of the DSR and DSS effects. Fasting and FMDs have the potential for applications in both cancer prevention and treatment.
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Either Longo or another fasting researcher pointed out that you can make a level of chemotherapy where none of the rats that are not fasting live and where all of the rats that are fasting live. So fasting is a powerful alteration of cells that makes them tolerate chemotherapy much better.
You might want to contact Alan Goldhamer of TrueNorth Health Center. They have almost four decades of experience getting fantastic results by fasting people (about 20K so far), such as curing cancers, Lupus, Diabetes, etc. See https://youtu.be/42QAyVkAS_0?t=71 or this https://www.youtube.com/watch?v=xuebTcdLIKY
The below is from a friend of mine who an M.D. told me has read so much about biomedicine that "it's as if he went to graduate school":
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In complete contrast to chemotherapy, fasting helps pain, anxiety and depression - http://www.mindthesciencegap.org/2013/04/10/fasting-for-ment....
For general information on fasting, I recommend reading or watching Dr. Jason Fung. He is a nephrologist from Canada. His book The Obesity Code (I have read it) is selling well, but you can get the same information by watching YouTube videos, which I preferred to his book. My favorite were his early lectures that are less flashy “The Aetiology of Obesity Part 1 of 6: A New Hope” https://www.youtube.com/watch?v=YpllomiDMX0 However, if a six hour graduate lecture series is more than you want to sign on for, any of the more recent videos at www.dietdoctor.com will provide the basics.
In addition to Dr. Fung, a number of doctors are publishing articles and videos about fasting and cancer:
* Dr. Fung quoting Noble winner for autophagy - https://www.dietdoctor.com/fasting-cellular-cleansing-cancer... & https://www.dietdoctor.com/attacking-cancers-weakness-not-st...
* Dr. Seyfried - https://www.youtube.com/watch?v=SEE-oU8_NSU - he wrote a book (https://www.amazon.com/Cancer-Metabolic-Disease-Management-P...) that I have not purchased this book, but it is highly regarded and referenced by others.
* Dr. Winters - https://www.dietdoctor.com/member/presentations/winters – This is a discussion of the metabolic approach to cancer
* Dr. Poff - https://www.dietdoctor.com/can-you-treat-cancer-with-low-car... - Keto diet and cancer
Some of this is very biochemistry based and is just tons of detail saying “fasting and/or a ketogenic diet will fight cancer.” Spending the time to understand the biochemistry of the disease and visualizing what you want your body to do will help your body heal. While this sounds very touchy, feely and like voodoo medicine to a traditionally trained biochemist, the research is strong on the ability of the mental imagery to have a therapeutic benefit. (Again, I cite Dr. Rosenthal, neuroscientist, as a higher authority).
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Pawpaw may be worth looking into.
This may be informative...
https://sciencebasedmedicine.org/ketogenic-diets-for-cancer-...
Beyond the obvious fact that wasting the last of your friend's life by pushing him to become a one-subject experiment from a random pubmed article is bad. HN is a tech nerd VC forum, and as a rule, nobody here knows anything about medicine. Even if there are one or two actual subject matter experts in this thread, you can't distinguish them from every idiot who thinks they are god's chosen genius because mommy got them an Apple II when they were kids. If, and only if, he's interested himself, try to get him into a clinical trial; don't get Zika virus from who knows where for the love of God. You'll be a good friend to him during this time. Best of luck.
(4 vaguely related people getting the same aggressive brain tumor sounds worrying)
Always put the phone on speakerphone and keep it away from your head.
This is no longer a fringe conspiracy theorist thing (though research on it is still early and relatively sparse).
For example:
https://edition.cnn.com/2018/05/02/health/brain-tumors-cell-...
https://pmc.ncbi.nlm.nih.gov/articles/PMC5417432/
Maybe it is causing certain cancers, maybe it isn't. Science will probably know more in 10 years. But in the mean time, why take on unnecessary risk?
man, people are so stupid, loads and loads of people are saying that EMFs at close distance are kinda harmful, yet you get downvoted, precautionary principle is your best ally to avoid harm or worse, these technologies are new, and medicine/research moves slowly especially if lobbies by the biggest/wealthiest corps in the world are involved.
My friend got fully recovered from stage 4 melanoma with immune therapy in Italy. Good luck
The state of the art in cancer treatment currently is personalized immunotherapies spearheaded by companies like BioNTech, etc.
Cancer should be viewed from a system wide perspective in my opinion rather than a location specific disease.
If you really want to get into biohacker territory, figure out how to sequence the tumor’s mutanome distribution and then generate a mRNA vaccine encoding the unique antigen markers of the tumor.
That’s basically what these biotech companies are doing[0]. If you need pointers on where to begin your research, BNT122 is a good place to start.
Good luck. Depending on how much money your friend has, you might be able to make something happen. Consider contacting biotech companies directly.
[0]: https://www.biontech.com/int/en/home/pipeline-and-products/p...
I've just read "Brainstorm" the recent biography by Richard Scolyer, the melanoma researcher who has survived 18 months, possibly due to a novel immunotherapy regime. It's worth a read, especially chapter 8, about his GBM treatment.
My takeaways:
* His treatment is an experiment. It's based on techniques regularly used in melanoma treatment, but which have not previously been used for brain cancers. Clinical trials are required to tell if the success to date is due to good luck or the treatment.
* There was/is a real chance of death due to complications, particularly brain swelling or damage to other organs, from the immunotherapy. There have been complications, including liver toxicity, but the book gives the impression that these have been managed.
* The drugs themselves are commercially available, the three immunotherapy drugs used (Anti-PD-1, Anti-CTLA-4, Anti-LAG-3) being "off the shelf" and the customised vaccine was manufactured by a US based company (not a research lab).
* A major barrier to someone else trying this treatment regime is finding a medical team willing to take the risk. That was probably the biggest reason Scolyer was able to access this treatment whereas others might struggle: he and his collaborator, Georgina Long, were able to convince others that it had a reasonable chance of working.
* The novel part of the treatment was delaying the usual brain surgery and steroids and not doing chemotherapy. Instead an immediate treatment was done with immunotherapty drugs, results showing that there was no "blood-brain barrier" that stopped them from working. After about 2 weeks, surgery was performed to remove the bulk of the tumour with minimal cutting into the healthy brain. Radiotherapy was then used, along with a continuing course of the immunotherapy and a course of a vaccine customised to the genetics of Scolyer's tumour.
* Planning is underway to run clinical trials, involving research institutes in Melbourne and the US and a pharmaceutical company, to test whether the results on Scolyer are reproducible.
Preprint of the publication:
"Neoadjuvant Triplet Immune Checkpoint Blockade in Newly Diagnosed Glioblastoma" (this is the paper that documents Scolyer's treatment and results to April 2024)
https://www.researchsquare.com/article/rs-4255559/v1
No, no folk remedies or bio-hacking or wearing magnets on your head will help, unfortunately.
It's a powerful Ask HN though. This is deeply touching.
This is the bargaining phase of grief, where a person will seek to do whatever they can to change a fate. But when they find they can’t no matter how hard they try, they’ll just proceed to anger and then depression.
They did cite a peer reviewed paper in nature to substantiate the spinny head magnets. I doubt it will save their friend, but it's not total hogwash
The paper was published in Nature *Scientific Reports*, not in Nature. Nature SR is a low-quality journal due to its very limited peer review (SR peer reviews only focus on scientific validity of a submitted paper, rather than its perceived importance, significance, or impact -- ie., they check if you followed proper scientific procedures, but won't check if what you're saying makes sense / fits with the rest of the scientific literature). It's a known dumping ground for papers that aren't good enough to be published in a real scientific journal, and it survives/thrives thanks to its association with the prestigious Nature journal.
At least the authors seem strong: https://www.researchgate.net/profile/Santosh-Helekar, https://scholar.google.com/citations?user=OpcbygoAAAAJ&hl=en, https://scholar.google.com/citations?user=2zxSrB0AAAAJ&hl=en
Very much an anecdote, but when I was younger, I knew someone who attributed the remission of their (expected to be terminal) brain cancer to eating lots of bananas that were so green/unripe that they crunched. I searched for this just now, and it seems there may be some real science behind it, but it's hard to say without digging into it further.
This protocol worked for some patients: mistletoe, valerian, stinging nettle, thyme, mountain germander, rosemary, oregano, yarrow, peppermint, lemon balm, chamomile, hops, st john's wort, glechoma hederacea (ground ivy/evergreen creeper), catnip, artemisia absinthium (common wormwood), artemisia vulgaris (common mugwort), greater celandine, erythrea centaurium, calendula officinalis (marigold), capsella bursa-pastoris (shepherd's purse), betula pendula roth (common birch), basil, althaea officinalis (marshmallow) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5809810/
Some things will stimulate the immune system for a little while and then taper off (prunella vulgaris, blue agave syrup, wasabi), whereas others are higher reliability (modified citrus pectin, ashwagandha, milk thistle, kefir/probiotics, food like coconuts, berries, pomegranates, mangoes, mushrooms, broccoli, cabbage, asparagus, etc).
There are harsher herbs/substances that work against cancer but damage your organs which should be avoided if possible (cat's claw, thunder god vine, aspirin, etc).
Other things to avoid include some b-vitamins like niacin/folate, amino acids like methionine/lysine/glutamine, potato chips, and other things that can help the cancer grow once it exists.
Also be sure to purify your air/water, air pollution will make the cancer grow a lot faster.
Additional notes are here: https://github.com/outdreamer/build-a-cure/blob/master/docs/...