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

The text below the title says stage 4 GBM, that is the specific form of brain cancer. So that’s that…

I don’t deny that smart people are trying to cure cancer. And I don’t pretend to be above them.

My point mostly is that I am reading about promising technology in the medical literature that is not through the clinical trials yet. So it is not available to the general public.

What I know is that the current available treatments are generally not working well. I don’t think my friend will last more than 6 months.

So what I am asking the community is: has anyone DIYed any of the promising technology and obtained any results. Seems fairly reasonable in a life and death situation.

As a matter of fact, someone who has GBM has indeed done just that (see in the thread). Unfortunately his experiment just started, so I can’t know if it worked for him or not yet.

Regarding Zika, yes it looks like it could work. You may not be able to do this at scale. I don’t have a clue. But if it was me, I’d book my flight to Brazil on the day of the diagnosis. A lot of people got Zika, the world didn’t end.

I don’t understand why people can’t stomach the Zika idea. A ton of medical research involves infecting people with live viruses.

https://www.bbc.com/future/article/20240823-why-some-people-...

Nope

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.

That's an important point. He did have the tumor removed, but declined to go through traditional chemo afterwards.

> 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.