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

106 points by d--b 11 hours ago

A friend recently got diagnosed with stage 4 GBM. It's the 4th person I know who has it, and it's getting old, so I want to help, bio-hacking style.

I stumbled upon these guys who built a helmet that rotates strong magnets to create oscillating magnetic fields in the brain. They claim the oscillating magnetic fields cause cancer cell death through mechanisms I don't understand at all.

https://www.nature.com/articles/s41598-023-46758-w

Did anyone try to build one of these?

-- Other avenues:

1. taking vortioxetine

https://ethz.ch/en/news-and-events/eth-news/news/2024/09/ant...

2. getting infected with the zika virus (probably the best thing to do IMO)

https://pubmed.ncbi.nlm.nih.gov/37324152/

https://pubmed.ncbi.nlm.nih.gov/33002018/

y33t 3 hours ago

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.

ausbah 7 hours 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

  • nikisweeting 5 hours ago

    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

    • JumpCrisscross 2 hours ago

      > 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.

    • kerkeslager 5 hours ago

      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.

      • mllev 3 hours ago

        OP is asking for lesser-known possible treatments/trials/diets/whatever for a friend who is probably weeks to months from death. And your contribution is to stop people from helping them because of something about what now?

  • _DeadFred_ 4 hours ago

    ↑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...

    • UniverseHacker 2 hours ago

      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.

    • mllev 3 hours ago

      I guess hope can be false now.

      • JumpCrisscross 2 hours ago

        > 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].

        [1] https://pmc.ncbi.nlm.nih.gov/articles/PMC6900746/#s10

        • mllev an hour ago

          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.

        • hnfong an hour ago

          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.

    • d--b 2 hours ago

      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.

  • lambdaphagy 5 hours ago

    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.

    • _DeadFred_ 4 hours ago

      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.

      • lambdaphagy 3 hours ago

        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.

        • zmgsabst 2 hours ago

          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.

          [1] - https://pmc.ncbi.nlm.nih.gov/articles/PMC8749320/

      • potsandpans 3 hours ago

        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.

        • lambdaphagy 3 hours ago

          OP has a reasonable concern, I just don't think it's the only consideration at play.

    • hsuduebc2 4 hours ago

      I love that someone asks for advice. Even for individual experience because he is miserable and some people are basically like "Nah just die. It would be uNeThIcaL."

    • lambdaphagy 5 hours ago

      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.

      • EVa5I7bHFq9mnYK 2 hours ago

        Is it juice specifically that should be avoided? What about grapefruit in solid form? Pomelo?

      • 7e 5 hours ago

        The problem is you can't figure out where to pick it; it's lost in a sea of superstitious noise.

        Even if you could find this fruit easily, "a food that cures cancer when eaten" does not exist. That would surface in epidemiological studies very quickly.

        • s1artibartfast 3 hours ago

          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.

        • lambdaphagy 4 hours ago

          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.

          • pama 3 hours ago

            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.

  • 7e 5 hours ago

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

    • mllev 2 hours ago

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

      You: FALSE!

    • d--b 3 hours ago

      Sure this is the right place for a good word

  • d--b 3 hours ago

    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 2 hours 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.

    • gwerbret 2 hours 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.

    • DriftRegion 2 hours 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 2 hours ago
        • adamredwoods an hour 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.

ibash 6 hours ago

You should ask them if they want you playing doctor.

I have a chronic disease, not fatal, and totally manageable. But the most annoying thing is when someone finds out and suddenly pretends to be the expert.

Of course my doctors and I investigating it for years were completely wrong! I should’ve ate more apricots!

Please just check with them if they want their limited time spent like that.

  • ionwake 6 hours ago

    dont get why that upsets you. I have had a chronic disease my whole life and one of the people who offered help completely saved my life.

    If anyone else told me to eat apricots Id be grateful for their time and attention.

    I would probably eat the apricots and tell them it was fantastic, even if it had no effect.

    Sorry I just have rarely seen my friends or family offer any advice.

    - Back to OP, Ive always remembered Paul Stamets recommending the stamets-7 mushroom blend with research papers talking about recession. no idea if it works.

    • konart 3 hours ago

      >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 you are not really iterested in and possibly don't even need - only to give some 3rd party a satisfaction as a "thank you" for their attention.

    • OPisntauthority 4 hours ago

      Not everyone wants to be reminded of their situation or turn major aspects of their life into a struggle.

      • serf 4 hours ago

        first: the person who doesn't want to be reminded is probably not the person that is approaching you and actively telling you that they are approaching the end of their life.

        second: speaking to them about their plight isn't the struggle; DEATH IS -- and we're all in that same boat.

        • anigbrowl 2 hours ago

          Telling people that you're terminally ill doesn't necessarily mean you're desperate to avoid death. It can be that you want to make the most of the time you have left, or ask for help with doing that, or need reassurances about protecting loved ones, a legacy, getting creative or scholarly work out into the world, or need help dealing with your fears/regrets or...many other things.

          I don't get this existential fear of death many people have. Entropy is a fundamental fact fo existence. I think a lot of people are fer less concerned with dying as such than they are with minimizing the suffering, loss of autonomy, or inability to prepare that often precedes it.

    • RIMR 4 hours ago

      The problem is that when you are trying to accept your fate and come to peace with it, and everyone else around you is trying to give you false hope. It's hard to break free from the constant futile wishful thinking if everyone around you is doing it for you.

      Sometimes you should just let people work with their doctors and come to peace with their situation.

      If I was dying of cancer, and someone told me to eat apricots, I might shove the apricots down their meddling throat.

    • scotty79 5 hours ago

      It can be bit annoying because people people think "can't hurt to try" but there's thousand unfounded things to try, little time, no way to pick and some of them could hurt. There's no harm in listening to ideas, being expected to implement them is another thing.

      • threeseed 4 hours ago

        a) Nobody here is talking about unfounded things nor demanding anyone do anything.

        b) There are not thousands of things to try. In fact in most cases there will be no options since you will need to be in a clinical trial, asking a Doctor to try something unproven and unethical or need substantial resources.

        • totallynothoney 2 hours ago

          > Nobody here is talking about unfounded things nor demanding anyone do anything.

          You sure? There's people commenting "just checked google scholar" and naming random plants without citing anything.

  • cwbrandsma 3 hours ago

    Same boat with having a chronic illness, not fatal, but no cure either. It gets tiring wading thru all the snake oil salesmen selling false hope. And it isn’t them directly, because my older family members will hear about it with “have you tried…”

  • kens 4 hours ago

    > I should’ve ate more apricots!

    Did you mention apricots deliberately? Apricot pits were a huge, huge alternative medicine in the 1970s under the name Laetrile. Proponents said that Laetrile would cure cancer and was being covered up. The FDA banned it, saying that it accomplished nothing other than potential cyanide poisoning. Meanwhile, tens of thousands of patients a year went to Laetrile clinics in Mexico and spent tons of money on it. Laetrile was smuggled into the US from Mexico, second only to marijuana. Enthusiasm dwindled after studies failed to find a benefit. (Just some hopefully interesting history about apricots.)

    A news article from the time: https://timesmachine.nytimes.com/timesmachine/1977/11/27/939...

alecst 11 hours ago

I'm really sorry to hear that. Since you're asking for moonshots and weird things to try, here's something they can ask their doctor about:

> Case reports involving glioblastoma patients using water-only fasting regimens in conjunction with other forms of cancer treatment have reported favorable outcomes with respect to tumor growth https://pmc.ncbi.nlm.nih.gov/articles/PMC2874558/ https://pmc.ncbi.nlm.nih.gov/articles/PMC5884883/

From https://pmc.ncbi.nlm.nih.gov/articles/PMC6836141/

  • fcanela 10 hours ago

    I have a relative with glioblastoma who could see his granddaughter born if he extends his life a while. Thanks a lot for sharing!

    • alecst 10 hours ago

      You're welcome. I read a lot about fasting and I have a lot of experience with it. It's helped me, personally, heal many things (but not all of them -- it's good to have low expectations.) In any case, it's a mind-expanding experience to go without food for a while, regardless of the outcome.

  • GIFtheory 4 hours ago

    Exercise can supposedly help outcomes for some types of cancer—-I wonder whether the mechanism is similar to that of fasting. The supposed mechanism AIUI is that exercise makes less glucose available to the tumor. Podcast with more info here: https://overcast.fm/+6j6rLbfGM

  • znpy 10 hours ago

    There was an episode from “diary of a ceo” (don’t let the title fool you) where a scientist was making similar remarks:

    https://youtu.be/VaVC3PAWqLk

    I wouldn’t usually post these kind of things, but since OP is asking for moonshots i’ll take a chance.

    Best of luck to your friend!

    • ballooney 2 hours ago

      You still shouldn’t post that kind of thing. Especially not that fraudulent bullshitter host.

  • d--b 11 hours ago

    Thanks

  • thomasfromcdnjs 6 hours ago

    I'm one of those stubborn types that will refuse all medical treatments, lots of fasting is my current go to strategy if some tumor gets out of control.

    • anonzzzies an hour ago

      steve jobs and many others tried things like that. if it makes you feel good then sure, but that alone will kill you faster when a tumor(s) gets out of control.

cj 7 hours ago

My best friend died of brain cancer.

Although not from the cancer itself. He died of an opioid overdose. He was prescribed pain killers for cancer-related pain, and got hooked. His doctors stopped prescribing, so he found it elsewhere, and got a bad batch with fentanyl. (He was a VC living in SF, well to do, he had all the treatment money could buy, but cancer ended up not being what killed him)

I know this isn’t what you’re looking for, but be sure to not ignore other parts of his health. Addiction and other disorders are common among people with terminal or not-so-great prognosis.

The most you can do is to be a great friend.

  • stickfigure 4 hours ago

    > Addiction and other disorders are common among people with terminal or not-so-great prognosis

    It's horrifying that we don't just give them what they want. Who are we to judge?

    • cdrini 2 hours ago

      I think that's a kind sentiment, but the counter arguments would be (1) they could very likely overdose and die, and (2) an addiction changes who you are, so it's not that "they" want it, it's the addiction that wants it. Your friend is the "they" before the addiction, and likely hates themselves after every time they fall off the wagon. To be clear we don't know the exact details, so we're speculating ; I could imagine some universe where it might make sense to let them, but in most cases I think what the real "they" would want is help breaking the addiction so they can spend their time doing the things that actually matter to them and give their life meaning.

  • nick__m 5 hours ago

    Stopping opioid because a cancer patient is addicted is incredibly cruel! sorry for your lost.

    • cdrini an hour ago

      Responded to one of your sibling comments with more thoughts, but it could very well be what the patient themselves wanted -- help with breaking the addiction so they could instead spend their time doing things they care about.

  • paulpauper 5 hours ago

    Addiction and other disorders are common among people with terminal or not-so-great prognosis.

    Or maybe his death was an outlier .pain meds are well tolerated by most people.

sirholmes 6 hours ago

Look at MDAnderson in Houston.

https://www.mdanderson.org/cancerwise/glioblastoma-survivor-...

https://www.mdanderson.org/cancerwise/how-i-knew-i-had-a-bra...

Along with other success stories, they helped my sister with a particularly lethal form breast cancer in one of their clinical trials.

Also - If your friend is approved and needs a place to stay, let me know. Know a couple of people who help house people who are getting treatment here.

You’re an amazing friend and I hope your friend gets the care they need

zblevins 11 hours ago

I have heard some people having luck by switching to a ketogenic diet. Here’s a paper I could find on PubMed about this. Sorry to hear about your friend.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9504425/

Edit: I am not a doctor. My wife is a physician and I spoke to her before posting this.

  • jawilson2 11 hours ago

    This. It is very dependent on the type of cancer. There is a lot of research on this. For a little context, I was a pediatric neurology professor for a while, and have been on a low carb diet for a decade. Much of the department did low carb, as did much of the oncology dept. Many kids with epilepsy are put on keto as well with great effect. I did a deep dive into low carb research before starting and keeping with the diet, and found a lot about using it for cancer therapy. I'm not sure what has changed in the last 10 years, but the above abstract looks promising. With a GBM, they probably don't have much to lose. *This is not medical advice, I'm not an MD (I was a BME doing epilepsy research), have them check with their Dr.

  • Dansvidania 10 hours ago

    I wish I had something better to add, but I can add an anecdotal +1 to this.

    A relative went keto pretty hard after a bad diagnosis and they are still going strong. As far as I understand it, cancer cells can only function on glucose.

  • olieidel 10 hours ago

    +1 on this. I did my thesis on Glioblastoma-related imaging stuff [1]. The state of the art at the time (~2016) was that, realistically, none of the current treatments were "great", unfortunately. In short, you have 1) surgery, 2) chemotherapy, 3) radiation. Those treatments did extend survival in studies, but the overall survival of Glioblastoma patients was (tragically) still very bad at 12-24 months, and none of those therapy options were a cure.

    As a side note, I recommend the book "Being Mortal" from Atul Gawande. The TLDR here is that our healthcare systems tend to overtreat patients, especially those with cancer who actually have a rather bleak prognosis, because it's easier for a physician to simply order all treatments and tell the patient "all good here, good luck" instead of taking the time to sit down and have a (long) conversation about the bleak prognosis and which options are actually still worth it. By "worth it" I mean that there are trade-offs to each treatment option, and it takes some very careful weighing whether each one provides a net benefit for your friend's individual situation. E.g. surgery might extend survival by X months, but might also create, worst case, new disabilities. So now you're faced with the very difficult decision of whether to potentially live for a shorter time with less disabilities, or for a longer time with more. There's no perfect answer, but having this sort of discussion is a good step which many patients unfortunately never take. I think this is a failure in our healthcare systems and maybe in the education of physicians.

    Now, if I personally had a Glioblastoma, on top of the standard of care (surgery probably makes sense etc.), I think the ketogenic diet would currently be my best shot. Yeah, sure.. it's mostly only case reports so essentially anecdotal evidence, but it does look promising.

    Good luck for your friend!

    [1] https://scholar.google.com/citations?user=tinu7tYAAAAJ&hl=en

  • adamredwoods 4 hours ago

    If diet could stop cancer, we'd be done by now. I guarantee every cancer will mutate to overcome any change in diet you can throw at it.

    • stickfigure 4 hours ago

      All cancer treatments are probabilistic. There are no cures, just interventions that increase survival rates. There are no honest sentences that begin with "every cancer".

      • adamredwoods 4 hours ago

        There is no diet that will even intervene with cancer, unless the patient dies.

        Cancer is the patient's own cell that has mutated to a point beyond apoptosis and adapted to be able to draw nutrients from cells around it. It started from just one cell. It has already evaded dietary fluctuations and adapted.

        EDIT: the reason I'm a spaz about this is I feel too many people focus on diet as the focus of cancer. While it might be good for some prevention, it will not stop it, and I want people to focus on real treatments.

        • threeseed 4 hours ago

          I don't understand unreasonable positions like this.

          Nobody is saying that people should stop "real" treatments or that diet must be the primary or sole focus for treatment. But given that a change of diet (a) costs nothing, (b) has no downsides, (c) potentially may work it seems strange not to do it.

          • adamredwoods 3 hours ago

            And yet it is a highly focused topic and cancer rates have not gone down.

    • zmgsabst an hour ago

      Diet impacts survival rate, in conjunction with treatment. Please stop spreading misinformation.

      https://pmc.ncbi.nlm.nih.gov/articles/PMC8749320/

      • adamredwoods an hour ago

        This paper you linked didn't solve anything. Please read it, and stop spreading misinformation:

        >> However, patients may not tolerate such a CR diet for prolonged time. Therefore, as alternative, it has been proposed an intermittent fasting regimen, whose beneficial effects also appear promising though somehow controversial in preclinical settings. This will require further elucidation in controlled clinical trials.

        Have you spoken to oncologists and cancer nutritionists? I have.

        • Pakrozee 25 minutes ago

          It seems there's some misunderstanding here. The paper doesn't claim to have solved the issue but highlights areas requiring further research, particularly controlled clinical trials to confirm the effects. Intermittent fasting is indeed a complex and debated topic, as preclinical findings often don't translate directly into clinical practice.

          I appreciate that you've spoken to oncologists and cancer nutritionists—real-world expertise is invaluable in discussions like this. Could you share any insights or perspectives they provided? It could help clarify and enrich the conversation for everyone.https://pakrozee.pk/

  • d--b 10 hours ago

    Thanks a lot, I hadn't seen this. I'll read through.

  • mixmastamyk 11 hours ago

    While we're thinking about it, Vitamin D3 and K2-mk-7 are known to be helpful in that regard.

    • myphone8356 11 hours ago

      Not an expert or doctor disclaimer.

      Sugar is the food cancer cells crave. Not a miracle cure but restricting sugars may help reduce the growth of the tumor.

      • hombre_fatal 7 hours ago

        I'm pretty sure that's an old myth that sugar preferentially feeds cancer cells and that you somehow starve them by reducing sugar intake. After all, the body maintains stable blood glucose levels regardless of how low your sugar intake is.

        e.g. https://news.cancerresearchuk.org/2023/08/16/sugar-and-cance...

        • amenhotep 6 hours ago

          "Reducing sugar intake" is not the same thing as ketosis. I have no strong opinions on whether it would work or not, but that's an article addressing something different and more clearly a misunderstanding.

aCameronhuff 4 hours ago

Here’s a summary of all of the current treatments and near future treatments for GBM/glioma: https://docs.google.com/file/d/1kTa3eamaL91Smjh9r_0CYv5OYFX4....

This is as complete a list as you’ll find, written in plain English, with citations for every part of it. Slightly out of date but there hasn’t been much that’s new and different since last year. Vorasidenib was approved recently in USA and it’s the most effective IDH inhibitor - worth reading more about.

The document is focussed on glioma but there’s a lot of GBM research. Unfortunately the short answer is that there is no cure and there is treatment that might be a cure under development. There are treatments that slow the course, and the patient’s doctors know all of them and they will recommend what’s best. This is an area of medicine that is hard for amateurs to learn about, and a neurooncologist has decades more training than their patients. The reality is this is a horrible disease that currently has no cure - and the treatments that work are all complex medicines prescribed by specialists.

jo6gwb 7 hours ago

Google Richard Scolyer: Top doctor remains brain cancer-free after a year. A year after undergoing a world-first treatment for glioblastoma, Australian doctor Richard Scolyer remains cancer-free.

Check out Sonalsense - https://www.sonalasense.com/for-patients. Requires specialized machine not in US as of last year.

Dr Mitchell Berger out of UCSF is the GOAT.

  • klipt 5 hours ago

    Scolyer is in the relatively fortunate position of being a world class cancer researcher before getting cancer, so he had the resources of an entire oncology lab to give himself a speculative treatment.

    • femto 5 hours ago

      Best hope in this regard is to keep an eye out for a resulting clinical trial, unless you have access to a friendly cancer research lab that wants to replicate the experiment.

nikisweeting 5 hours ago

Disclaimer: am not a doctor + know nothing about this branch of medicine, but this fairly new drug cured one of my family member's (stage 2?) lung cancer that metastisized to brain: https://en.wikipedia.org/wiki/Osimertinib aka Tagrisso

My understanding is that it's a 3rd generation evolution of immune-system-boosting drugs that "teach your immune system to attack cancer".

I don't know how fundamentally different brain cancer that starts in the brain is vs lung cancer that moves to the brain, but maybe similar approaches are possible?

IAmGraydon 10 hours ago

The occurrence of GBM is about 3 out of every 100,000 people. If you happen to know 4, is there some commonality? Do you all work together in the same industry? Do they all live in the same town?

  • deegles 10 hours ago

    My aunt is in her 70s and has 5 friends currently with cancer. My belief is that it's downstream effects from Covid wrecking people's immune systems and their ability to naturally fight cancer. Time will tell.

    • dekhn 10 hours ago

      Bayes and Occam would suggest otherwise. If you're in your 70s in the US it's likely many people you know have cancer (unrelated to COVID). Especially now, given that detection is better than ever and more people are surviving longer with cancer.

      • MichaelZuo 6 hours ago

        Even more so, Probably 100% of the population over 70 has cancer in the sense of a clump of abnormal cell divison, just that for a lot of them it’s so slow growing or in a benign tumor that it doesn’t get discovered or treated.

    • Loughla 7 hours ago

      Not even thinking about environmental factors then?

  • throwawayffffas 10 hours ago

    I was about to say this knowing 4 people with GBM means there is something in your environment causing this.

    I am sorry about your friends.

  • d--b 10 hours ago

    No it's so weird, no connection at all between any of them.

    • georgeburdell 4 hours ago

      Military? Glioblastoma is correlated to military service in the First Gulf War

    • lithocarpus 5 hours ago

      All four have the same kind of brain cancer? Or just have some kind of cancer?

ChrisMarshallNY 6 hours ago

Damn. Sorry to hear that.

I have had two friends get it, and neither made it. Another died of it, but it metastasized from their lung (Yeah, I have known a hell of a lot of people with cancer. Most have survived).

If you have known 4 people with the same cancer, they call that a "cluster," in the vernacular, and it might not be a bad idea to see if you can figure out where it comes from.

Here on Long Island, we have numerous breast cancer clusters. I am pretty cynical that people know the cause, but don't want to deal with it.

I had a serious non-cancerous tumor, back in '96, but managed to learn to walk and chew gum again, after a couple of months.

The key is whether or not it's operable. Mine was, none of my other friends were operable.

  • rappatic 6 hours ago

    > I am pretty cynical that people know the cause, but don't want to deal with it.

    I looked up "long island breast cancer" and saw a long list of risk factors. Out of curiosity, did you have a specific one in mind?

    • droidist2 5 hours ago

      Long Island is a very dense with overhead power lines, but then again look at Tokyo.

glitchc 10 hours ago

Sorry friend, there no hacks from brain cancer. Mortality rate at Stage 4 is 100%. You're better off spending as much time as you can with them.

  • aCameronhuff 4 hours ago

    Unfortunately this is true, and there’s no near-term treatment that might change this outcome. There’s some treatments for slowing it down but there’s no proof of anyone being cured by any experimental method. There’s great progress being made and thousands of people working on paths to a cure but we’re still early days for some diseases.

frisco 10 hours ago

Personally knowing four people with GBM and not being an oncologist is exceptional and worrying. That feels like it should be raised to… someone. It is very possible something bad is happening and a commonality needs to be tracked down urgently.

  • selcuka 6 hours ago

    I knew two people (one adult, one child) who lived in the same building and got diagnosed with leukemia (~14 per 100,000) shortly after each other, maybe within a few weeks.

    It's anecdotal, of course, but I've always thought that there could have been a connection.

    • hinkley 5 hours ago

      It could be birthday paradox, but it could potentially be enough to get someone to come check for contaminants.

      Looks like benzene, some pesticides, and formaldehyde are the common workplace exposures that can trigger leukemia. But some of those can turn up near housing.

      • selcuka 3 hours ago

        > benzene, some pesticides, and formaldehyde are the common workplace exposures that can trigger leukemia.

        That rings a bell. I remember that someone mentioned a recent repainting of the building. The incident happened at least a decade ago, so I can't remember all details.

  • d--b 10 hours ago

    It is indeed very strange, none of these people lived in the same place or got diagnosed at the same time (some 20 years ago). Most are fairly remote to me though... Like : a good friend's mom, or my wife's cousin's husband, etc.

delichon 11 hours ago

My dad lasted ten weeks after diagnosis. If I get it I'll put my ducks in a row and exit intentionally, rather than raging against the dying of the light. Fighting it is great if your friend is up for it, and it's a way for you to show your love. But listen carefully and don't force it.

  • d--b 11 hours ago

    Sorry for your dad. That thing's a bitch.

aetherspawn 10 hours ago

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 a lot of people claim it doesn’t work, but I think it’s probably similar to a low dose natural chemo.

I have seen it work unusually well with skin cancers (melanoma) as well using paste application (this is called black salve), so despite what the FDA claims, I think there’s something there, and there’s a few papers that agree.

Don’t put black salve on your head, it leaves a hole where the cancer comes out.

  • throwaway2037 3 hours ago

    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.
  • aetherspawn 10 hours ago

    She also swears by a product (basically a huge B17 dose) called Cascading Revenol that a guy on an old set of CDs Phillip Day (“the Truth about Cancer”) recommended to take with blood root.

    It advertises itself as a natural tumour growth inhibitor.

Oras 10 hours ago

A few years ago, I came across the idea of autophagy. The idea is water fasting for at least 24 hours to trigger the self-destruction of cells.

Combined with keto diet, as some suggested, might be a starting point.

So sorry to hear about your friend. My mom had a breast cancer that spread to brain. At that time, the only medicines that worked were Tykerb and Xeloda, as these were the only ones that could travel to the brain. They had promising results for a few months, and the tumour shrank a lot and then started growing again.

https://en.wikipedia.org/wiki/Autophagy

cjbgkagh 7 hours ago

There are immune system supporting mechanisms for particular immune system dysfunctions that tend to co-occur with cancer. A particularly interesting one is Low Dose Naltrexone which is super cheap and has practically no downsides.

If there is a case of even mild dysautonomia various meds like modafinil and amitriptyline can help along this axis.

neom 10 hours ago

That spinning hat is pretty cool. When cells breath they create a byproduct (Reactive Oxygen Species) - all cells do this, they need to keep their ROS levels in check else the cell will die, but because cancer cells have messed up mitochondria, they don't do this correctly and typically end up with way more ROS. That hat agitates the cells so they produce more ROS, but because the cancer cells are almost at capacity, it overloads them and they die from ROS strangulation.

"For 4-hour treatment:

Reduced DIPG cells by >80% Reduced GBM cells by >60%"

  • echelon 10 hours ago

    > That hat agitates the cells so they produce more ROS, but because the cancer cells are almost at capacity, it overloads them and they die from ROS strangulation.

    If this is the understood mechanism and it has measurable results, why isn't this in widespread use?

    • neom 9 hours ago

      Research is about a year old, even with fast track 4 years would be fast.

    • d--b 10 hours ago

      it looks like research is way underfunded. My guess is that it is too rare, and people die quickly so clinical trials really suck.

geuis 4 hours ago

Keto diets seem to have at least a positive anecdotal effect. Putting aside the cancer part, a strict adherence to the caloric restriction diet has general health benefits. Whether the positive health benefits impact the cancer itself is unknown. It may simply be that being healthier helps patients deal with the impacts of chemo and radiotherapy.

Also possible is that caloric restriction helps to put the body into a biology mode that helps to combat cancerous tissue.

There's no solid science behind any of this, but generally being healthier helps with any medical treatments.

rswail 2 hours ago

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.

wayoverthecloud 6 hours ago

My father-in-law's stage 4 brain tumor was discovered when he was 50. He's in good health now. They operated on him and removed the tumors and did chemotherapy. They continuously monitored for regrowth but it didn't happen. He did yoga religiously for most of his adult life. Even his hair has grown back.

bhl an hour ago

Look into immunotherapy trials at hospitals like UCSF. They might have pre-existing conditions which would make them in-eligible however. In any case, try to spend as much time with them as possible; you won't regret anything when they pass.

AdmiralAsshat 10 hours ago

Had a very close friend who passed away years ago from it. We tried various things, from apricot pits to a hat with electrodes attached to his head. Nothing worked.

He died about a year before John McCain died of the same. I regretted that we didn't try to do more, but, seeing that it took McCain in the same length of time did make me feel a little bit better (not that I was happy for McCain's death, but that his connections and world-class treatment made no meaningful difference in how long it prolonged his life versus that of my friend).

toomuchtodo 11 hours ago

Find a clinical trial you can get them into.

63 5 hours ago

You may not like hearing this, but the best thing you can do for him is be a supportive friend and try to make him happy when you get the time to. You are not an expert on brain cancer. You will not become an expert on brain cancer before he dies. You know who is an expert on brain cancer? His oncologist. I know grief is hard and you're motivated by your love for the people in your life, but there isn't some cheap hack that will fix this. Trust the experts to do their job and for the love of god don't take cancer advice from strangers on the internet. In the meantime, love your family, love your friends, love your life, and try to make others happy.

  • farseer 2 hours ago

    His Oncologist is definitely an expert but is not allowed to practice unorthodox moonshot treatments or unproven "hacks" at the risk of loosing his license. This is a desperate situation, and there is no harm in trying something, anything. I am sure his friend doesn't want people around him to give up on him either.

joeyrideout 5 hours ago

I recently listened to this Diary of a CEO podcast episode [1] discussing the potential link between blood glucose from carbohydrate-heavy diets and cancer. It is an alternate metabolic theory of cancer, and the podcast guest claimed that fasting followed by a keto diet was showing early success as an intervention for cancer patients (as an addition, not a replacement, to existing standard of care). I have not seen the data nor do I know the sample size, but the discussion convinced me to rethink my carb intake.

[1] https://www.youtube.com/watch?v=VaVC3PAWqLk

pcarolan 6 hours ago

Lost my wife to brain cancer (gb4). After sifting through the noise, here’s what works based on stat sig research as far as I know:

1. Radiation

2. Surgery, awake craniotomy to reduce loss of function

3. Temodar chemotherapy

4. Optune helmets

5. Monoclonal antibodies

6. Maybe high dose vitamin C (suspicious results)

If I knew then what I know now I would have focused on reducing stress in our lives as it felt like it accelerated the growth, perhaps due to a weakened immune system. Quality of life and joyful moments together is the best you can hope for. It brings you into awareness of the magic of life and each other. Focus on that — which is 100% in your control.

Here is a link to the optune helmet: https://www.optunegio.com/

adamredwoods 4 hours ago

Sequence the cancer. Get involved in clinical trials early.

There's no "biohacking" cancer without pharmatech. It mutates. You would need a two or three sided attack. There was a concept on causing the cancer to have an "extinction event" and I agree with that, due to how cancer mutates.

We're also missing tools to see how effective treatments are, on a day-to-day basis. This may be out of technological reach.

Also, keep in mind, the blood-brain barrier is difficult to deal with.

ampdepolymerase 21 minutes ago

> getting infected with the zika virus (probably the best thing to do IMO

Virology based methods don't last very long because the immune system adapts quickly. If you want to go down that route, make sure you have experts on hand.

lylejantzi3rd 11 hours ago
dantodor 7 hours ago

Look for prof. Seyfried videos on youtube about GBM and his protocol.

rkhassen9 8 hours ago

so sorry for your friend. I've wondered about the studies you linked as well as these from some previous links from HN you may or may not have already seen:

mRNA Cancer Vaccine Reprograms Immune System to Tackle Glioblastoma in 48 Hours(https://www.insideprecisionmedicine.com/topics/oncology/mrna...) 406 points|birriel|8 months ago|230 comments Researchers develop treatment that can kill glioblastoma cells in brain pathway(https://medicalxpress.com/news/2024-08-therapy-treatment-gli...) 142 points|wglb|5 months ago|19 comments Blood–brain barrier opening with ultrasound device in patients with glioblastoma(https://www.thelancet.com/journals/lanonc/article/PIIS1470-2...) 62 points|bookofjoe|2 years ago|31 comments Precision Oncology: Epigenetic Patterns Predict Glioblastoma Outcomes(https://directorsblog.nih.gov/2016/12/06/precision-oncology-...) 45 points|sciadvance|8 years ago|10 comments Doctor cancer free after novel glioblastoma self-treatment(https://nypost.com/2024/05/15/lifestyle/australian-doctor-ri...) 40 points|crhulls|8 months ago|2 comments Man lives 10 mo without recurrence after groundbreaking glioblastoma treatment(https://twitter.com/ProfRScolyerMIA/status/17700383563004236...) 31 points|jrpt|10 months ago|4 comments Study kills glioblastoma by manipulating brain's astrocytes(https://scitechdaily.com/groundbreaking-method-starves-highl...) 16 points|graderjs|2 years ago|0 comments Ask HN: Help with Glioblastoma

droideqa 9 hours ago

I am not a doctor at all, but I found these via Google scholar.

1. Ruta graveolens extract[0][1]

2. Terpenes[2]

3. Metformin helps temozolomide[3][4][5]

4. Tumor treating induced fields (magnetic fields like you originally said) [note: published after your paper, and your paper wasn't cited by it][6]

5. Ibrutinib[7]

---

[0]: https://journals.plos.org/plosone/article/file?id=10.1371/jo... [1]: https://www.mdpi.com/1422-0067/25/21/11789

[2]: https://www.sciencedirect.com/science/article/abs/pii/B97803...

[3]: https://pmc.ncbi.nlm.nih.gov/articles/PMC5762574/ [4]: https://pmc.ncbi.nlm.nih.gov/articles/PMC10340608/ [5]: https://link.springer.com/content/pdf/10.1007/s12672-023-006... (not effective)

[6]: https://pmc.ncbi.nlm.nih.gov/articles/PMC11524832/

[7]: https://www.science.org/doi/10.1126/scitranslmed.aah6816

  • neom 7 hours ago

    re: #4, they seem to be quite different. The paper OP referenced is considerably more novel, paper [6] here is incremental improvement on existing technology (TTFields).

chasil 10 hours ago

If you search on "glioblastoma" you will find a LOT of hits.

I don't know anybody that has had it, but let's see if I can find the new treatment that I remember...

Edit:

https://www.nejm.org/doi/full/10.1056/NEJMoa1610497

https://www.nature.com/articles/s41586-024-08224-z

This one is interesting... glioblastoma is full of killer immune cells (40% of all cells, mostly macrophages) that are "docile."

https://scitechdaily.com/groundbreaking-method-starves-highl...

  • d--b 10 hours ago

    These look good, thanks much.

ugh123 3 hours ago

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

steviee 11 hours ago

Hack your calendar and be there for him! All the best!

  • yzydserd 10 hours ago

    How do you know it’s a male?

    • jtms 10 hours ago

      Do you feel a question like this improves literally anything other than your own sense of moral superiority?

      • yzydserd 10 hours ago

        Yes. I simply hope the commenter reflects and doesn’t use a gender next time if there is no evidence of gender. That’s simply it. In 2025 I don’t feel it is appropriate for a commenter to use the pronoun “him” when there is no evidence of gender, and there isn’t at the time of comment.

        I called someone out recently for the same, incurring -4 karma, and it turned out the gender pronoun was wrong: https://news.ycombinator.com/item?id=42514127#42520946

        • lastiteration 9 hours ago

          Who cares about the gender pronoun, it's just a commenter online. The content is why we are reading. The author could be male, female or a bot. Not important, not relevant.

    • madmask 10 hours ago

      He doesn’t need to know

bigkuanysh 6 hours ago

Fasting, and carnivore diet.

Anthony Chaffee, Shawn Baker, and Sean Omara are strong signals and examples of what modern diets lead to: inflammation, sickness, slow death.

teyc 3 hours ago

There's a professor who argues that cancer cells are fermentation and ketogenic diet is one of the pathways. There are drugs to stop this kind of respiration as well.

People on Twitter regularly posts links to relevant PubMed articles.

Spooky23 7 hours ago

Look for trials - CART has had promising results for glioblastoma.

yread 10 hours ago

become an professor and try some immunotherapy like prof. Long and prof. Scolyer?

https://www.bbc.com/news/world-australia-69006713

  • cjbillington 7 hours ago

    As of his latest scan in November, 18 months post surgery, Scolyer's cancer hasn't recurred [1]. Average time to recurrence post-surgery is 6 months.

    Don't want to leap to conclusions prematurely, but that might be some progress.

    [1] https://x.com/ProfRAScolyer/status/1859179205885673877

    • adamredwoods 26 minutes ago

      He tried an experimental payload that contained two ADCs, one BRAF inhibitor and something else, maybe PD-1 inhibitor. Then he had surgery. Payload-heavy ADCs are the way forward against difficult cancers.

      • Pakrozee 26 minutes ago

        They're using weakened viruses. Virus use in cancer is nothing new, but an interesting field. I can see why pharma hesitates using it, viruses can mutate, too, similar to cancer. https://pakrozee.pk/

koolba 7 hours ago

Did all your friends with brain cancer know each other? If so, that seems like more than a coincidence.

toss1 10 hours ago

Sorry to hear about your friend; awful for both of you.

Anything you can build or brew at home? About as good as chanting spells at the moon on alternate Tuesdays. And definitely do NOT go get infected with some virus, which will only create greater complications and misery.

The only real chance I'd see out there is to get into a trial of some of the new immunotherapy treatments [0]. These create custom profiles and turn the body's immune systems against the cancer and have had some stunning successes — talk about biohacking — these researchers are out there!

Of course these are still in development. There is a lot of research going on around Boston [1-5], Mayo Clinic [6], and other research hotbeds.

Locating teams researching therapies applicable to your friend's cancer type, and hacking your way into one of those trials would likely be one of your best hacks ever; I'd focus on that. Gather the info, find out what it takes to get into the trials, get your friend qualified...

Best of luck - I hope you can organize a great recovery for your friend!

[0] https://www.cancer.gov/about-cancer/treatment/types/immunoth...

[1] https://www.bidmc.org/research/research-centers/cancer-resea...

[2] https://www.massgeneral.org/cancer-center/clinical-trials-an...

[3] https://www.bumc.bu.edu/immunology/research/cancer-immunolog...

[4] https://www.bmc.org/content/immunotherapy

[5] https://www.ludwigcancerresearch.org/location/boston-harvard...

[6] https://www.mayo.edu/research/centers-programs/cancer-resear...

byyoung3 11 hours ago

fasting and low carb probably wouldn't hurt

blader 11 hours ago

1. Tumor Treating Fields (electricity, not magnets): https://pubmed.ncbi.nlm.nih.gov/37953242/

2. CEGAT Vaccine: https://www.nature.com/articles/s41467-024-51315-8

3. Supplementation: keto diet, curcumin, sauna, and some Chinese traditional medicines all have good academic data that improves overall and progression free survival

Source: I am a rare disease dad and did a lot of research and put together a private research team as well.

  • d--b 10 hours ago

    Thanks for your message. My friend's getting TTF as part of his medical treatment. CEGAT Vaccine, I didn't know about, I'll look into it.

    Several people have mentioned keto diet, it also looks like a smart thing to try.

totallynothoney 2 hours ago

Beyond the obvious fact that wasting the last of your friend's life by pushing him to become a one-subject experiment from a random pubmed article is bad. HN is a tech nerd VC forum, and as a rule, nobody here knows anything about medicine. Even if there are one or two actual subject matter experts in this thread, you can't distinguish them from every idiot who thinks they are god's chosen genius because mommy got them an Apple II when they were kids. If, and only if, he's interested himself, try to get him into a clinical trial; don't get Zika virus from who knows where for the love of God. You'll be a good friend to him during this time. Best of luck.

(4 vaguely related people getting the same aggressive brain tumor sounds worrying)

Gluber 11 hours ago

Did your friend get genetic sequencing done on his tumor. There are some recent promising results for braf mutated gbm

  • d--b 10 hours ago

    No, they can't reach the tumor surgically. Thanks for the info though.

kerkeslager 5 hours ago

Sorry to hear about your friend.

Here's a joke:

Q: What do you call alternative medicine that works? A: Medicine.

Seriously though, "bio hacks" are no different. If these things worked, it's very likely they'd just be normal practiced oncology. Oncology isn't a subfield of medicine where researchers are overly cautious about risks. The patient is practically guaranteed to die, so even if your research has a chance of killing the patient, that's an improvement.

It is far more likely that whatever shallow reading of the medical data you bring to the table is going to counterproductive than productive. I strongly suggest not meddling.

  • taxicabjesus 22 minutes ago

    The author of this Ask HN is asking because conventional cancer medicine is not good enough. I think cancer dissidents say the screening programs for early treatment makes the doctors look better by increasing the number of non-fatal cases that are “diagnosed”. But most people who die after a certain age all have non-fatal tumors in their bodies…

    > Q: What do you call alternative medicine that works? A: Medicine

    Medicine that doesn’t work is grandfathered in to be called Medicine to. I don’t know how standard harmful treatments get retired from active use.

    I mentioned your joke in a comment on a submission about stents: https://news.ycombinator.com/item?id=14722748

scotty79 5 hours ago

20mg melatonin daily (perfectly safe for years, doesn't affect sleep patterns at this dose)

Depakote for seizures (instead of something else)

All I know that when those were stopped recurrence started. It was after 5 healthy years on those and nothing else. It was primary anaplastic grade 3 glioma.

Obviously get surgery, radiation and Temozolomide for initial treatment.

Pigalowda 7 hours ago

I’m sorry you’re having to deal with your friend’s suffering. Unfortunately there’s no hack that will help with GBM in any meaningful way. The best thing you can hope for is that the pathologist made a mistake and it’s Astrocytoma rather than GBM.

Dove 10 hours ago

Pawpaw may be worth looking into.

anticancer 10 hours ago

I had a family member diagnosed with an aggressive cancer, and we were able to shock the doctors with their progress and recovery.

Our goal was to contribute as much as we could to the treatment effort, and so we focused on diet and rest.

Namely we removed all sugar and glutamine (animal products), and took care of all household tasks: cleaning, cooking, getting to appointments, etc.

Each cycle when we would get the blood test results we would add items to the diet to address any numbers that were falling.

For example, increasing iron, folate and b-complex rich foods like lentils to support platelet production.

There is a lot to be said about where chemo and radiation treatments are these days, and I am thankful for the medical interventions.

The drug treatment designed by the doctors, and our efforts at home, led to the tumor shrinking at such a rate that my family member is considered a statistical anomaly, and their blood protein markers are at below normal levels; down from 27x the normal level when we started treatment.

This book is a great resource: https://www.howtostarvecancer.com/the-book/

In addition to diet advice it also covers a lot of new or experimental treatments for nearly all cancers.

I truly believe diet can make a huge impact on addressing cancer.

Good luck.

23B1 5 hours ago

You're a good friend trying to search for answers and I hope you find one.

Inviz 7 hours ago

My friend got fully recovered from stage 4 melanoma with immune therapy in Italy. Good luck

SoftTalker 11 hours ago

No, no folk remedies or bio-hacking or wearing magnets on your head will help, unfortunately.

  • abnercoimbre 11 hours ago

    It's a powerful Ask HN though. This is deeply touching.

    • deadbabe 10 hours ago

      This is the bargaining phase of grief, where a person will seek to do whatever they can to change a fate. But when they find they can’t no matter how hard they try, they’ll just proceed to anger and then depression.

  • internetter 10 hours ago

    They did cite a peer reviewed paper in nature to substantiate the spinny head magnets. I doubt it will save their friend, but it's not total hogwash

cjameskeller 6 hours ago

Very much an anecdote, but when I was younger, I knew someone who attributed the remission of their (expected to be terminal) brain cancer to eating lots of bananas that were so green/unripe that they crunched. I searched for this just now, and it seems there may be some real science behind it, but it's hard to say without digging into it further.

alienbot1234 6 hours ago

This protocol worked for some patients: mistletoe, valerian, stinging nettle, thyme, mountain germander, rosemary, oregano, yarrow, peppermint, lemon balm, chamomile, hops, st john's wort, glechoma hederacea (ground ivy/evergreen creeper), catnip, artemisia absinthium (common wormwood), artemisia vulgaris (common mugwort), greater celandine, erythrea centaurium, calendula officinalis (marigold), capsella bursa-pastoris (shepherd's purse), betula pendula roth (common birch), basil, althaea officinalis (marshmallow) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5809810/

Some things will stimulate the immune system for a little while and then taper off (prunella vulgaris, blue agave syrup, wasabi), whereas others are higher reliability (modified citrus pectin, ashwagandha, milk thistle, kefir/probiotics, food like coconuts, berries, pomegranates, mangoes, mushrooms, broccoli, cabbage, asparagus, etc).

There are harsher herbs/substances that work against cancer but damage your organs which should be avoided if possible (cat's claw, thunder god vine, aspirin, etc).

Other things to avoid include some b-vitamins like niacin/folate, amino acids like methionine/lysine/glutamine, potato chips, and other things that can help the cancer grow once it exists.

Also be sure to purify your air/water, air pollution will make the cancer grow a lot faster.

Additional notes are here: https://github.com/outdreamer/build-a-cure/blob/master/docs/...