Ask HN: A friend has brain cancer: any bio hacks that worked?

y33t · 2025-01-10T05:50:36 1736488236

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.

d--b · 2025-01-10T09:10:22 1736500222

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.

JumpCrisscross · 2025-01-10T16:42:42 1736527362

> 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/

d--b · 2025-01-11T09:41:12 1736588472

Agreed

grayhatter · 2025-01-10T15:56:40 1736524600

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.

RamblingCTO · 2025-01-10T08:48:44 1736498924

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.

lumost · 2025-01-10T09:13:38 1736500418

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.

hoppp · 2025-01-10T09:49:53 1736502593

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.

RamblingCTO · 2025-01-14T09:20:02 1736846402

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.

sfn42 · 2025-01-10T16:04:13 1736525053

Not like they have much to lose

UnknownFriend · 2025-01-10T17:21:46 1736529706

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.

nimih · 2025-01-11T06:02:53 1736575373

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.

ausbah · 2025-01-10T01:37:00 1736473020

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

nikisweeting · 2025-01-10T03:26:24 1736479584

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

JumpCrisscross · 2025-01-10T06:32:09 1736490729

> 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.

isleyaardvark · 2025-01-10T16:54:42 1736528082

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.

JumpCrisscross · 2025-01-10T17:36:02 1736530562

> 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.

shakna · 2025-01-10T14:12:04 1736518324

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.

nozzlegear · 2025-01-10T14:44:06 1736520246

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.

kerkeslager · 2025-01-10T03:42:15 1736480535

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.

mllev · 2025-01-10T05:43:11 1736487791

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?

ibash · 2025-01-11T07:35:07 1736580907

Because it’s actively harmful.

kerkeslager · 2025-01-11T23:21:18 1736637678

> 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.

nikisweeting · 2025-01-12T04:22:09 1736655729

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.

kerkeslager · 2025-01-12T04:46:54 1736657214

> 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.

nikisweeting · 2025-01-12T06:57:19 1736665039

> 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

kerkeslager · 2025-01-13T18:11:48 1736791908

> 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.

lambdaphagy · 2025-01-10T03:03:33 1736478213

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.

_DeadFred_ · 2025-01-10T04:02:13 1736481733

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.

lambdaphagy · 2025-01-10T04:54:54 1736484894

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.

zmgsabst · 2025-01-10T06:43:40 1736491420

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/

ryandrake · 2025-01-10T16:18:26 1736525906

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.

lambdaphagy · 2025-01-10T16:38:10 1736527090

Elsewhere in the thread I argue why efficient market hypothesis arguments are unlikely to fully apply in this case.

ryandrake · 2025-01-10T17:12:48 1736529168

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.

lambdaphagy · 2025-01-10T23:41:28 1736552488

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.

_DeadFred_ · 2025-01-10T20:11:34 1736539894

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.

lambdaphagy · 2025-01-13T04:17:12 1736741832

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.

Earw0rm · 2025-01-10T10:11:31 1736503891

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.

zmgsabst · 2025-01-11T02:39:25 1736563165

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”.

Earw0rm · 2025-01-12T10:14:34 1736676874

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.

potsandpans · 2025-01-10T04:57:21 1736485041

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.

_DeadFred_ · 2025-01-10T20:21:25 1736540485

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.

potsandpans · 2025-01-11T03:46:52 1736567212

Too long didn't read

lambdaphagy · 2025-01-10T05:19:06 1736486346

OP has a reasonable concern, I just don't think it's the only consideration at play.

lambdaphagy · 2025-01-10T03:12:57 1736478777

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.

7e · 2025-01-10T03:30:46 1736479846

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.

lambdaphagy · 2025-01-10T04:33:28 1736483608

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.

pama · 2025-01-10T05:11:23 1736485883

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.

s1artibartfast · 2025-01-10T05:36:28 1736487388

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.

EVa5I7bHFq9mnYK · 2025-01-10T06:08:28 1736489308

Is it juice specifically that should be avoided? What about grapefruit in solid form? Pomelo?

youngtaff · 2025-01-10T09:12:27 1736500347

All grapefruit… my wife has clear instructions on this for her heart meds

hsuduebc2 · 2025-01-10T03:56:17 1736481377

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."

potsandpans · 2025-01-10T05:08:45 1736485725

It's incredible. People are completely out of touch.

totallynothoney · 2025-01-10T06:22:13 1736490133

Time is precious.

_DeadFred_ · 2025-01-10T03:51:58 1736481118

↑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...

UniverseHacker · 2025-01-10T06:27:41 1736490461

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.

Earw0rm · 2025-01-10T10:04:32 1736503472

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.

UniverseHacker · 2025-01-10T17:21:40 1736529700

> 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.

kerkeslager · 2025-01-12T00:43:43 1736642623

> 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?

UniverseHacker · 2025-01-14T19:28:24 1736882904

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

graemep · 2025-01-10T17:04:43 1736528683

Definitely true, and I know that its common for people who are terminally ill to feel the same.

ungreased0675 · 2025-01-12T06:30:16 1736663416

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.

mllev · 2025-01-10T05:44:08 1736487848

I guess hope can be false now.

selenography · 2025-01-10T13:50:43 1736517043

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...

_DeadFred_ · 2025-01-10T20:53:08 1736542388

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?

JumpCrisscross · 2025-01-10T06:24:13 1736490253

> 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

mllev · 2025-01-10T07:21:03 1736493663

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.

JumpCrisscross · 2025-01-10T08:59:06 1736499546

> 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).

mllev · 2025-01-10T21:19:42 1736543982

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.

hnfong · 2025-01-10T07:12:05 1736493125

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.

d--b · 2025-01-10T05:56:24 1736488584

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.

_DeadFred_ · 2025-01-10T20:47:50 1736542070

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'?

d--b · 2025-01-12T22:46:49 1736722009

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.

avgDev · 2025-01-10T15:39:26 1736523566

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.

ryandrake · 2025-01-10T16:08:53 1736525333

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.

avgDev · 2025-01-10T19:19:31 1736536771

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.

7e · 2025-01-10T02:57:41 1736477861

It's false hope, swallowed hook line and sinker.

d--b · 2025-01-10T05:41:09 1736487669

Sure this is the right place for a good word

mllev · 2025-01-10T05:56:28 1736488588

Person with cancer: I hope this new treatment works for me

You: FALSE!

d--b · 2025-01-10T05:19:50 1736486390

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.

UniverseHacker · 2025-01-10T05:57:53 1736488673

> 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.

trehalose · 2025-01-10T18:39:49 1736534389

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.

UniverseHacker · 2025-01-10T19:26:42 1736537202

"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.

gwerbret · 2025-01-10T06:38:51 1736491131

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.

dekhn · 2025-01-10T17:24:50 1736529890

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.

DriftRegion · 2025-01-10T05:59:06 1736488746

> 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?

WithinReason · 2025-01-10T06:29:20 1736490560

https://en.wikipedia.org/wiki/Dallas_Buyers_Club

adamredwoods · 2025-01-10T07:20:46 1736493646

>> 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.

Earw0rm · 2025-01-10T10:16:20 1736504180

Likelihood of this happening in the internet era, for something with an order of magnitude more rapid progression than HIV/AIDS?

alecst · 2025-01-09T21:47:31 1736459251

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/

fcanela · 2025-01-09T22:10:55 1736460655

I have a relative with glioblastoma who could see his granddaughter born if he extends his life a while. Thanks a lot for sharing!

alecst · 2025-01-09T22:17:38 1736461058

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.

serguzest · 2025-01-10T16:25:51 1736526351

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.

GIFtheory · 2025-01-10T04:05:01 1736481901

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

znpy · 2025-01-09T22:05:29 1736460329

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!

ballooney · 2025-01-10T06:08:31 1736489311

You still shouldn’t post that kind of thing. Especially not that fraudulent bullshitter host.

d--b · 2025-01-09T21:49:48 1736459388

Thanks

thomasfromcdnjs · 2025-01-10T02:05:08 1736474708

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.

anonzzzies · 2025-01-10T07:33:29 1736494409

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.

ibash · 2025-01-10T02:39:49 1736476789

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.

ionwake · 2025-01-10T02:48:07 1736477287

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.

konart · 2025-01-10T05:21:49 1736486509

>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.

loa_in_ · 2025-01-11T06:34:51 1736577291

How else could they get to know that if the whole topic is taboo?

konart · 2025-01-12T16:42:45 1736700165

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).

RIMR · 2025-01-10T03:54:20 1736481260

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.

scotty79 · 2025-01-10T03:34:19 1736480059

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.

threeseed · 2025-01-10T04:44:39 1736484279

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.

scotty79 · 2025-01-10T09:50:52 1736502652

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".

rkhassen9 · 2025-01-10T18:14:27 1736532867

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.

totallynothoney · 2025-01-10T06:26:26 1736490386

> 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.

shakna · 2025-01-10T18:06:40 1736532400

> 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.

OPisntauthority · 2025-01-10T03:55:54 1736481354

Not everyone wants to be reminded of their situation or turn major aspects of their life into a struggle.

serf · 2025-01-10T04:27:10 1736483230

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.

anigbrowl · 2025-01-10T06:12:10 1736489530

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.

cwbrandsma · 2025-01-10T05:09:26 1736485766

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…”

kens · 2025-01-10T03:54:24 1736481264

> 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...

serguzest · 2025-01-10T16:16:13 1736525773

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

ToDougie · 2025-01-10T19:11:26 1736536286

What have you been doing? Asking for a desperate friend (me).

serguzest · 2025-01-11T07:58:42 1736582322

clear men 3in1 active carbon shampoo. avon argon oil. ketogenic diet (I do this for weight loss but it helps for SD too)

cj · 2025-01-10T01:41:55 1736473315

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.

stickfigure · 2025-01-10T04:00:59 1736481659

> 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?

cdrini · 2025-01-10T06:47:51 1736491671

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.

stickfigure · 2025-01-10T18:42:58 1736534578

That sounds incredibly patronizing. For some people, just being comfortable and happy for the remainder of their brief miserable life is meaning enough.

cdrini · 2025-01-10T19:58:33 1736539113

And if so, then that's fine. But for others it isn't. And my guess is the latter is more common.

cdrini · 2025-01-11T20:38:33 1736627913

This video popped up on my YouTube recently and illustrates this idea well: https://youtu.be/JyzJrkF21MM

avgDev · 2025-01-10T15:42:46 1736523766

Taking opiates from a terminal patient should be against the medical oath.

nick__m · 2025-01-10T03:35:19 1736480119

Stopping opioid because a cancer patient is addicted is incredibly cruel! sorry for your lost.

cdrini · 2025-01-10T06:52:19 1736491939

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.

egorfine · 2025-01-10T10:40:46 1736505646

> 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.

JumpCrisscross · 2025-01-10T16:47:53 1736527673

> 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...

egorfine · 2025-01-10T17:24:11 1736529851

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.

JumpCrisscross · 2025-01-10T17:29:32 1736530172

> 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.

egorfine · 2025-01-10T17:33:30 1736530410

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.

paulpauper · 2025-01-10T03:50:24 1736481024

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.

zblevins · 2025-01-09T21:38:19 1736458699

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.

jawilson2 · 2025-01-09T21:47:52 1736459272

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.

droideqa · 2025-01-09T21:57:50 1736459870

The keto diet was actually developed specifically to help people with epilepsy[0].

[0]: https://epilepsysociety.org.uk/about-epilepsy/treatment/keto...

Dansvidania · 2025-01-09T21:51:14 1736459474

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.

layla5alive · 2025-01-10T05:23:18 1736486598

Some types of cancer cells

Dansvidania · 2025-01-10T15:30:39 1736523039

do you have a source for this? not arguing, just would like to read more

circlefavshape · 2025-01-10T12:04:09 1736510649

In my life a relative (by marriage) went keto after a bowel cancer diagnosis, and died at age 45

olieidel · 2025-01-09T22:13:11 1736460791

+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

d--b · 2025-01-09T21:52:29 1736459549

Thanks a lot, I hadn't seen this. I'll read through.

mixmastamyk · 2025-01-09T21:41:34 1736458894

While we're thinking about it, Vitamin D3 and K2-mk-7 are known to be helpful in that regard.

myphone8356 · 2025-01-09T21:48:52 1736459332

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.

hombre_fatal · 2025-01-10T01:42:17 1736473337

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...

amenhotep · 2025-01-10T02:16:41 1736475401

"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.

malfist · 2025-01-13T14:55:18 1736780118

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.

adamredwoods · 2025-01-10T03:55:11 1736481311

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.

stickfigure · 2025-01-10T04:05:18 1736481918

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".

adamredwoods · 2025-01-10T04:27:54 1736483274

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.

stickfigure · 2025-01-10T18:09:29 1736532569

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.

adamredwoods · 2025-01-10T23:33:25 1736552005

I did. Diet is not going to cure cancer, but they want us to eat well to survive treatments.

Client4214 · 2025-01-10T19:49:39 1736538579

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.

adamredwoods · 2025-01-10T23:42:54 1736552574

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

Client4214 · 2025-01-13T14:36:29 1736778989

I appreciate the reply, I'll read through the links.

threeseed · 2025-01-10T04:49:11 1736484551

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.

adamredwoods · 2025-01-10T05:44:21 1736487861

And yet it is a highly focused topic and cancer rates have not gone down.

throwaway290 · 2025-01-10T08:49:35 1736498975

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

eaurouge · 2025-01-11T00:42:36 1736556156

> 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/

zmgsabst · 2025-01-10T06:53:48 1736492028

Diet impacts survival rate, in conjunction with treatment. Please stop spreading misinformation.

https://pmc.ncbi.nlm.nih.gov/articles/PMC8749320/

adamredwoods · 2025-01-10T07:01:58 1736492518

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.

Pakrozee · 2025-01-10T07:56:11 1736495771

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/

zmgsabst · 2025-01-11T02:36:58 1736563018

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.

adamredwoods · 2025-01-11T07:02:23 1736578943

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.

sirholmes · 2025-01-10T02:21:58 1736475718

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

jo6gwb · 2025-01-10T01:34:41 1736472881

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.

klipt · 2025-01-10T03:21:37 1736479297

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.

femto · 2025-01-10T03:48:30 1736480910

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.

aCameronhuff · 2025-01-10T04:15:23 1736482523

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.

mahkeiro · 2025-01-10T07:46:00 1736495160

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.

aCameronhuff · 2025-01-10T12:37:56 1736512676

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.

d--b · 2025-01-10T05:29:22 1736486962

Thanks a lot

aCameronhuff · 2025-01-10T12:33:22 1736512402

You’re welcome. I’m the author if you have any questions.

IAmGraydon · 2025-01-09T21:56:49 1736459809

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?

deegles · 2025-01-09T22:01:36 1736460096

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.

dekhn · 2025-01-09T22:23:28 1736461408

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.

MichaelZuo · 2025-01-10T02:03:06 1736474586

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.

Loughla · 2025-01-10T01:37:09 1736473029

Not even thinking about environmental factors then?

admissionsguy · 2025-01-10T16:57:00 1736528220

Unlikely to be COVID. The mRNA vaccine on the other hand...

armchairdweller · 2025-01-15T10:32:39 1736937159

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)

throwawayffffas · 2025-01-09T22:02:13 1736460133

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.

d--b · 2025-01-09T22:02:30 1736460150

No it's so weird, no connection at all between any of them.

lithocarpus · 2025-01-10T03:29:09 1736479749

All four have the same kind of brain cancer? Or just have some kind of cancer?

d--b · 2025-01-12T22:37:43 1736721463

Yeah all GBM

georgeburdell · 2025-01-10T04:04:47 1736481887

Military? Glioblastoma is correlated to military service in the First Gulf War

EVa5I7bHFq9mnYK · 2025-01-10T05:45:23 1736487923

Radar microwave radiation?

georgeburdell · 2025-01-10T14:36:53 1736519813

Burn pits (link is about Second Gulf War)

https://amp.cancer.org/cancer/risk-prevention/chemicals/burn...

d--b · 2025-01-12T22:37:53 1736721473

glitchc · 2025-01-09T21:57:02 1736459822

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.

aCameronhuff · 2025-01-10T04:19:38 1736482778

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.

frisco · 2025-01-09T22:01:32 1736460092

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.

d--b · 2025-01-09T22:07:26 1736460446

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.

selcuka · 2025-01-10T02:07:31 1736474851

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.

hinkley · 2025-01-10T02:51:01 1736477461

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.

selcuka · 2025-01-10T05:18:21 1736486301

> 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.

hinkley · 2025-01-10T19:32:44 1736537564

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.

ChrisMarshallNY · 2025-01-10T01:56:37 1736474197

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.

rappatic · 2025-01-10T02:46:37 1736477197

> 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?

ChrisMarshallNY · 2025-01-10T10:05:23 1736503523

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.