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

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

#161

Post by [deleted] »

_DeadFred_ wrote: post #137
ausbah wrote: post #87

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

↑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…

[deleted]

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

#162

Post by lambdaphagy »

_DeadFred_ wrote: post #145
lambdaphagy wrote: post #117

Earlier quoted context omitted.

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 epistem…

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.…

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.

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

#163

Post by potsandpans »

_DeadFred_ wrote: post #145
lambdaphagy wrote: post #117

Earlier quoted context omitted.

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 epistem…

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.…

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.

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

#165

Post by potsandpans »

hsuduebc2 wrote: post #142
lambdaphagy wrote: post #117

Earlier quoted context omitted.

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 epistem…

I love that someone asks for advice. Even for individual experience because he is miserable and some people are basically like "Nah just die. It would be uNeThIcaL."

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

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

#166

Post by cwbrandsma »

ibash wrote: post #110

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.

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…”

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

#167

Post by pama »

lambdaphagy wrote: post #157
7e wrote: post #127

Earlier quoted context omitted.

The problem is you can't figure out where to pick it; it's lost in a sea of superstitious noise. Even if you could find this fruit easily, "a food that cures cancer when eaten" does not exist. That would surface in epidemiological studies very quickly.

I admire your optimism in epidemiology. In point of fact, though, we have a rough natural experiment in the form of a food that doesn't cure a disease, but rather makes half of all drugs worse . That's very valuable knowledge, and under ideal epistemic conditions it might have been discovered within a few years of organized drug discovery as such. Yet was not widely known until the 1990s. So that's a failed positive…

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.

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

#168

Post by selcuka »

hinkley wrote: post #114
selcuka wrote: post #100

Earlier quoted context omitted.

I knew two people (one adult, one child) who lived in the same building and got diagnosed with leukemia (~14 per 100,000) shortly after each other, maybe within a few weeks. It's anecdotal, of course, but I've always thought that there could have been a connection.

It could be birthday paradox, but it could potentially be enough to get someone to come check for contaminants. Looks like benzene, some pesticides, and formaldehyde are the common workplace exposures that can trigger leukemia. But some of those can turn up near housing.

> benzene, some pesticides, and formaldehyde are the common workplace exposures that can trigger leukemia.

That rings a bell. I remember that someone mentioned a recent repainting of the building. The incident happened at least a decade ago, so I can't remember all details.

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

#169

Post by lambdaphagy »

potsandpans wrote: post #163
_DeadFred_ wrote: post #145

Earlier quoted context omitted.

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.…

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…

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

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

#170

Post by d--b »

ausbah wrote: post #87

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

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.

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