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

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181–190 of 380 posts

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

#182

My mother has “frozen” breast cancer for 15 years using oral bloodroot (Sanguinaria canadensis). To give you the short version of the story about how it works for HER: taking bloodroot causes the cancer to shrink too small to take a biopsy, but not go into remission, and when she stops taking it per the doctors advice, it gets very large and they start talking about surgery. Nobody really understands how it works and…

About Sanguinaria canadensis, Wiki says: https://en.wikipedia.org/wiki/Sanguinaria

    Although limited laboratory research indicates potential for sanguinarine to inhibit the growth of cancer cells, there are no supportive clinical studies, and its use is discouraged due to adverse effects and potential toxicity.

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

#183
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.

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

#184
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…

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.

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

#185
post #116
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

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

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

You: FALSE!

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

#186
post #170
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…

> 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.

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

#187
post #170
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…

> 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?

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

#188
Telix https://telixpharma.com that is working on theraputics and diagnostics for gioblastomas (amongst other cancers).

The Australian of the Year (a quasi government annual position) was last year given to Professor Scoyler, who is a leading melanomia researcher. He was diagnosed with gioblastomas 2-3 years ago and was able to make himself a research subject for immunologic and other approaches to dealing with brain cancer.

My friend was diagnosed with gioblastoma 2 years ago, she is very much dependent on steroids and has exhausted the chemo/radio possibilities.

It sucks, but hopefully getting better. Search out all of the possible trials and other potential cures.

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

#189
post #174

How does one even obtain zika virus to try that? Although yet, the "case report" talks about only 1 patient

Zika virus is in the wild and in virus banks.

Since no virus banks will hand you out a live virus strain, your best shot is to fly to the rain forest, and get bitten by mosquitoes.

At worst, it gives you an excuse for one last trip to Thailand… you may contract dengue fever and chikungunya though, which is not exactly pleasant.

The case is not a patient, the woman caught the virus cause she lives in Brazil.

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

#190
post #184

Earlier quoted context omitted.

↑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…

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…

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