Comment by ausbah 8 days ago
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
> OP is explicitly asking for hacks and "out there" solutions, I think this is a reasonable place to post anecdata, papers, personal theories, etc. as long as people state their confidence level and link to sources when possible
As long as OP and their friend know this is spinning wheels for fun and is pretty much certainly not going to extend their lifespan, sure. There can be satisfcation in knowing you never truly came--nor will ever come--to terms with death.
The post reads a bit like one of those stackoverflow questions seeking a solution to x when that’s not the problem they should be solving.
> post reads a bit like one of those stackoverflow questions seeking a solution to x when that’s not the problem they should be solving
Sort of. They're looking to be a good friend and assuage perceived helplessness in the face of a repeat foe. )=(From a clinical perspective, the most-useful observation in the thread may be the unusual frequency with which this person has seen GBM.)
More broadly, we tell the stories of Sancho following Don Quixote through windmills, or Sam following Frodo to Mordor, because loyalty over reality is itself a reality of humanity. Like Sancho or Sam, our role in that journey is less to weigh its merits and more to keep our hero from cliffs. That, however, means the person playing that role has to see clearly.
As someone who nearly died a little over two years ago from cancer... It's irresponsible.
Point to the experts, but don't cause further pain through at best, false hope, and at worst, a murderous experience for your last few days.
Lots of people want to help. That leads to questions like this. You're desperate to help someone who is suffering. But you will absolutely make that suffering worse if you act through ignorance.
As someone with a mother, stepfather and multiple extended family members who've survived cancer thanks to modern medical science, all I can say is hopefully their friend at least asked before OP went out looking for these harebrained schemes.
I disagree. OP is just asking for medical misinformation, and it would be irresponsible to provide it.
Self-assessed confidence levels are basically useless because the most confident people are generally the most ignorant. It's causal: ignorance causes people to be confident. The more you know, the more you realize how little you know.
> And your contribution is to stop people from helping them
No. In the vast majority of cases, answering this question as intended isn't helping them, it's actively harming them.
> because of something about what now
You're responding to a post which explains this. If you understood the post, faking confusion is dishonest. If you didn't understand the post, you weren't qualified to disagree with it.
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 epistemic institutions, and the infeasibility of running enough trials to address every indication in every subcohort. So if anecdata supports some intervention that that isn't aggressively inconsistent with basic theory, won't make you miserable for what might be the rest of your life, and which you could try with the sober understanding that your One Weird Trick might not work, why not?
If nothing else, a well-documented case study with good adherence tells us of one more thing that didn't work, which is hardly the worst parting gift to the world.
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. If they want to inflict in upon themselves, that is one thing. But to do it because OP has had enough losing friends is selfish. You will never stop losing friends to death, in fact, it will only accelerate from here on out. It will never get easy. In fact, it compounds as more and more joy/light/goodness leaves the world and those you turned to for support are gone. It's part of the deal they made when our parents volunteered us for this existence.
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.
As a pure numbers game, I’d find it more surprising if “broscience” never found a result:
- a lot of terminal patients are prone to experimenting
- their overall number probably eclipses the total number of trial patients in a given year by at least one order of magnitude and I’d believe two or three
- they don’t have institutional barriers to what they can try, eg, they’ll fund non-patentable treatments
- a lot of their approaches are taking things from published papers and trying to recreate similar effects (eg, calorie control [1])
That they’ve stumbled across at least one treatment that solved at least one case for at least one patient seems likely. Isolating that from incorrect null results is where the epistemological struggle is. And there’s a good chance that it won’t help you with your particular case.
But what’s the harm in trying? — you’re probably going to die anyway.
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.
Your tone policing in offensive. Psychological and quality of life in end of life situations are valid and necessary considerations to include when talking about life threatening conditions.
I said nothing about how a terminally ill person should process anything. I stated what I have found to provide the best outcome when a person close to you has a terminal disease. If OP said 'my friend asked me to research...' I would have given a different response/no response.
But when OP makes it look like this is an initiative OP took upon themselves, for themselves, because they have lost too many friends, then yeah, I'm going to highlight that might not be the best possible position to come from if OP wants the best outcome for their friend. My response about outcomes it totally valid since OP asked for help with outcomes.
OP has a reasonable concern, I just don't think it's the only consideration at play.
To give a practical example, grapefruit juice contains some compounds that inhibit CYP3A4, a metabolic enzyme that influences the metabolism and absorption of many drugs, which is why many prescriptions tell you not to drink it while taking a given medication.
This interaction was not discovered until 1989, and not reported until two years after that. So before 1991, a simple dietary intervention that affected like half of all drugs and that could in principle have been noticed by patient who felt bad after drinking a common household beverage, was bro science.
Which is not to say "and therefore just do whatever", but just to point out that there's plausibly a lot of low-hanging fruit still left if you can figure out where to pick it.
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 control, which suggests that our practical capabilities to detect these kinds of effects are limited. Understandably so, given that there is no general requirement for dietary logging in clinical trials.
That said, "a food that cures cancer when eaten" is not the bar for experimentation. More realistic might be something like "a dietary or behavioral protocol that, in some way, ameliorates this or that illness".
For organisms with our body plan, "a cure for cancer" is like talking about "a cure for defection". But clearly there's "stuff that is efficacious against particular instances of cancer", a lot of which we found through techniques like natural product screens, i.e. "just trying stuff", rather than via rational drug design.
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.
I think there is a lot of efficacy left on the table with modern studies, clinical trials, and drug development. Most of the work is looking for treatments that work for the majority of the population. If a treatment was effective than standard care for 10% of people, it would be discarded.
It is more economical to start over looking for something that works for 90% of people.
Drugs an treatments aren't evaluated and discarded when proven worthless. The bottleneck is the number of treatments in development, so they are discarded when something else has a better ROI.
Is it juice specifically that should be avoided? What about grapefruit in solid form? Pomelo?
↑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 getting, the oncologists they are seeing, and drop re-affirming 'you are getting the best care'. They want to feel like they are getting good treatment. Not like 'if only they got something else they would have a better chance'. But reality is, they are getting the care they are going to getting. Hype the heck out of it, reassure them. Even if the care sucks, find something to hype. Ease the 'if only' burden/regret/fear on them, don't contribute to it with 'if only you could go see Joel Olsteen's prosparity preaching in person and he blessed you' or go see John of God in Brazil or something. If nothing else hype that the WHO ranked France in best overall healthcare. Leave out the 'in 2000'. 'Thank god we are in France, who the WHO ranked best in overall healthcare'. Find things for them to take comfort in.
https://www.who.int/news/item/07-02-2000-world-health-organi...
Personally, if I were dying and someone kept saying fake nonsense like "you are getting the best care" I'd probably cut off contact with them, or at least wish they would stop. I'd know I'm getting mediocre care like everyone else, that's also part of accepting the reality of the situation. I'd know my doctor probably graduated at the bottom of his/her class or else he/she wouldn't be an authorized provider on an HMO- and he/she probably can't understand or doesn't read the latest medical research on his/her own. And that probably doesn't matter one bit, because the "best care" wouldn't work either.
I might also want them to share technical ideas they think might help, or at least I would tell them if I wanted them to or not. If you decide to experiment on yourself, you can still accept the reality of a terminal illness. For me, that would be part of ending my life with dignity- knowing I sincerely tried to understand and solve the problem my own, and share what I learned with others, just like I did in the rest of my life.
The best care is not necessarily the best bleeding-edge treatment.
Most medical jobs are only possible at all (without burning out and destroying the person doing them) through them mostly acting in accordance with best practice and training.
The ultra-rich don't have markedly better survival from nasties like GBM than the rest of us, unfortunately, so if better exists, it's not something money can buy.
And where some degree of survival can indeed be bought, the medical industry does at least have a solid record of scaling it out to the professional classes, even if the poor go without.
> The best care is not necessarily the best bleeding-edge treatment
It's mostly a conceptual thing for me. As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind.
For example- I do have a doctor that is a hacker/nerd/scientist that also teaches college biochem courses for fun on the side and he was about to prescribe me a medication, but then based on an offhand comment I had made, realized I've had a number of bad reactions to medications that he knew off the top of his head were metabolized by the same liver enzyme as this new medication. This guy keeps a book about drug metabolism biochemistry on his desk, and the cover is nearly worn off from use.
I most likely have a SNP in that enzyme, that would have given me another bad reaction. This is deep nerdy biochem knowledge he was not going to get from any official protocol that led to better and safer care. The biggest problem here is we like geeking out on this stuff so much, he almost forgets to actually treat me when I visit him.
I've had other doctors that even if I had noticed the potential P450 enzyme issue myself, would refuse to listen because they have a fundamentally non-technical mindset, combined with ego issues about being the expert- that are usually made worse not better if I mention that I have professional expertise and training on the underlying biology.
In truth, I'll admit it is both quite rare to get any real benefit, and legally risky for the doctor to deviate from guidelines based on direct knowledge or understanding.
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.
Sure, if by "now" you mean "at least since Geoffrey Chaucer's time":
> And thys vyce cometh of false hope that he thynketh he thall lyue longe, but that hope fayleth ful ofte.
[1] https://www.google.com/books/edition/The_Workes_of_Geffray_C... [2] https://books.google.com/ngrams/graph?content=false+hope&yea...
Or, come to that, "at least since Cicero's time":
> ...cui legi cum vestra dignitas vehementer adversetur, istius spes falsa et insignis impudentia maxime suffragatur.
[3] https://anastrophe.uchicago.edu/cgi-bin/perseus/citequery3.p...
If I let playing the lottery change how I interact with the world/prevent me from dealing with my situation, because I hope I will win, that 'hope' is a negative impact on my life.
If I encourage my friend who is down on their luck to buy lottery tickets so they can have hope, am I helping them, am I being kind?
> guess hope can be false now
"Hope is false if it is based on ignorance of the correct assessment of the probability that a desire is fulfilled or on ignorance with regard to the desirability of the object of desire. Hope is justified—realistic—when the hoping person knows and accepts experts’ judgement about the probability of hope fulfillment. However, I argued, what matters for evaluating a person’s hope is not only whether it is realistic, but also whether it is reasonable in light of the aim and goals for which the person strives in (the remainder of) his life
...a person’s hope that an (experimental) treatment may prolong his or her life or improve the quality of his or her life can only be called false when he or she thinks that the chances of personal benefits are greater than those estimated by experts. If he or she does accept their judgement, continuing to hope is realistic. Hope is moreover reasonable if it contributes to realizing what a person strives for in (the remainder of) his life" [1].
I agree that the probability of a desired outcome is valuable information. But to call being unaware of this information “false hope” is a blight on our language. Hope is hope. It’s quite proven that believing a certain outcome is likely increases the likelihood of that outcome.
Hope is premised on the basis that nobody knows the future 100%.
Experts can give a mostly-frequentist analysis based on past medical cases.
The unknown part is whether those cases apply to yours.
And nobody knows.
All the so-called probability is meaningless. It matters not whether your chances of remission is "99%" or "1%". Those numbers are meaningless in a specific case under a specific situation.
I understand this is not the commonly understood notion of probability, but the common notion is simply wrong.
I'm not saying experts are wrong, I'm happy to assume that their analyses are quite correct when applied to a population. I'm just saying the common way of interpreting their statistics onto one specific case (the one you care about) is wrong, because you can't just plug the probability onto a single person/case and round it off to zero or one.
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.
Yes, my point is you should be putting your friend with a terminal condition at ease so that they can skip wasting any energy on regretting their healthcare situation thinking they would have lived 'if only...', and you should help them enjoy/process/maximize their remaining time.
I get what you want and why you are here, I do. Been there done that for friends and family. I lost my mom, don't think I didn't try to find every treatment, and for me she did them all no matter the pain/loss in quality of life it inflicted on her. In the end watching Joel Olsteen gave my hippie/anti christian progressive mom comfort so guess what, anti-organized religion me sat and watched Joel friggen Olsteen with her as she accepted and processed her situation, while inside I screamed 'noooooooo, we can't accept this! NOOOOOOOOOOOOO! Mom no, I can't lose you, and our final time can't be spent watching Joel friggen Olsteen!'. And on that final day, when she was suffering in worse pain than I can Imagine, I put on a brave face and told here it was OK mom, she can go now, she can have peace now, while inside I screamed 'you can not goooo! The world will end if you go!!!! You can't leave me, ever'.
Do you really think anyone is saying 'you can go now' inside when they tell someone it's OK to go? Do you really think everyone thinks their local medical care is the absolutely best in the world when they say 'man, good thing you got Doctor X, good thing we have this facility'?
I think it is ok to seek some alternatives or "hacks" for some hard to diagnose chronic stuff like fatigue, as there are so many things that can cause this.
However, when you know you have certain disease there is nothing like talking to an expert in the field. Internet is filled with garbage and misinformation now. People selling snake oil.
HackerNews is also filled with people who think they know better than experts because they can write code.
For sure, I have an example from my life even.
I've seen a well regarded specials for a neurological issue I am having. She knows everything I've learned over the years and all about emerging research and treatments.
Suggested supplements I already knew about and meds. Also, said nothing is a silver bullet.
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.
> 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.
"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.
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.
> 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?
>> 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.
OP is explicitly asking for hacks and "out there" solutions, I think this is a reasonable place to post anecdata, papers, personal theories, etc. as long as people state their confidence level and link to sources when possible