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

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351–360 of 380 posts

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

#351
Highly recommend looking into the work of Thomas Seyfried, the metabolic theory of cancer, press-pulse approach, glutamine targeting

Press-Pulse approach described: https://www.youtube.com/watch?v=q7kOs6bS1Hg&t=7185s (~ keto+exercise+hyperbaric oxygen therapy+standard approaches which become more effective)

https://nutritionandmetabolism.biomedcentral.com/articles/10...

https://www.bc.edu/bc-web/bcnews/science-tech-and-health/bio...

https://www.nature.com/articles/s42003-019-0455-x

https://pmc.ncbi.nlm.nih.gov/articles/PMC8200410/

https://www.youtube.com/watch?v=6PJfOFTaYow

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

#352
I've just read "Brainstorm" the recent biography by Richard Scolyer, the melanoma researcher who has survived 18 months, possibly due to a novel immunotherapy regime. It's worth a read, especially chapter 8, about his GBM treatment.

My takeaways:

* His treatment is an experiment. It's based on techniques regularly used in melanoma treatment, but which have not previously been used for brain cancers. Clinical trials are required to tell if the success to date is due to good luck or the treatment.

* There was/is a real chance of death due to complications, particularly brain swelling or damage to other organs, from the immunotherapy. There have been complications, including liver toxicity, but the book gives the impression that these have been managed.

* The drugs themselves are commercially available, the three immunotherapy drugs used (Anti-PD-1, Anti-CTLA-4, Anti-LAG-3) being "off the shelf" and the customised vaccine was manufactured by a US based company (not a research lab).

* A major barrier to someone else trying this treatment regime is finding a medical team willing to take the risk. That was probably the biggest reason Scolyer was able to access this treatment whereas others might struggle: he and his collaborator, Georgina Long, were able to convince others that it had a reasonable chance of working.

* The novel part of the treatment was delaying the usual brain surgery and steroids and not doing chemotherapy. Instead an immediate treatment was done with immunotherapty drugs, results showing that there was no "blood-brain barrier" that stopped them from working. After about 2 weeks, surgery was performed to remove the bulk of the tumour with minimal cutting into the healthy brain. Radiotherapy was then used, along with a continuing course of the immunotherapy and a course of a vaccine customised to the genetics of Scolyer's tumour.

* Planning is underway to run clinical trials, involving research institutes in Melbourne and the US and a pharmaceutical company, to test whether the results on Scolyer are reproducible.

Preprint of the publication:

"Neoadjuvant Triplet Immune Checkpoint Blockade in Newly Diagnosed Glioblastoma" (this is the paper that documents Scolyer's treatment and results to April 2024)

https://www.researchsquare.com/article/rs-4255559/v1

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

#353
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…

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.

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

#355

Earlier quoted context omitted.

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…

> 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…

> 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

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

#356

Always put the phone on speakerphone and keep it away from your head. This is no longer a fringe conspiracy theorist thing (though research on it is still early and relatively sparse). For example: https://edition.cnn.com/2018/05/02/health/brain-tumors-cell-... https://pmc.ncbi.nlm.nih.gov/articles/PMC5417432/ Maybe it is causing certain cancers, maybe it isn't. Science will probably know more in 10 years. But in the…

man, people are so stupid, loads and loads of people are saying that EMFs at close distance are kinda harmful, yet you get downvoted, precautionary principle is your best ally to avoid harm or worse, these technologies are new, and medicine/research moves slowly especially if lobbies by the biggest/wealthiest corps in the world are involved.

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

#357

Earlier quoted context omitted.

True. But for the highest-grade nasties, where median life expectancy is unfortunately short and progression near-universal, you don't need much signal to get above the noise. Anyone surviving more than a handful of years with something like that is an outlier such as to merit a full work-back, and at that point it's no longer bro science.

Conversely, those are also the least likely to be solved by random trial and error. Those people largely just die, no matter what you do — that’s what makes it a “highest-grade nasty”.

I think that's partly a survivor (the disease surviving, not the patient) bias effect.

Things that could be solved by random discoveries are no longer considered the highest-grade nasties. There were a lot more intractably fatal conditions in 1870 than there are today.

So the likelihood of there being answers that could have been randomly discovered by medics with 1870 or 1920 levels of knowledge is tiny. At the same time, the sum of human knowledge has expanded so rapidly since then, it's not impossible for stuff to get missed.

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

#358
post #171

Earlier quoted context omitted.

>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 y…

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

Well, it's not a taboo (at least I've read it as if the person is just tired of it).

But generally you can just ask something like "Will it be fine with you if you I share a piece of advice?"

This works even better if you tell why you think this might be relevant at all (for example if you have some expertise or have a very similar experience yourself).

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