Comment by d--b

Comment by d--b 8 days ago

9 replies

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 8 days ago

> 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 Much of his specific ideas and suggestions are basically outdated, but his general attitude towards understanding biology and solving problems on your own is excellent.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 8 days ago

    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 8 days ago

      "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 8 days ago

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 8 days ago

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 8 days ago

> 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 8 days ago
    • adamredwoods 8 days ago

      >> 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 8 days ago

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