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

> going to a first-class brain surgeon is no less a moonshot than any other bio hacks I can find online

American "physicians received significantly less intensive care than the general population" at the end of their lives [1]. (Canadian physicians "used both intensive and palliative care more than nonphysicians" [2].)

The lesson seems to be yes, go ahead and pursue your moonshots, but don't let that cloud the reality of the situation and don't let the moonshots debilitate what little time you have left.

[1] https://jamanetwork.com/journals/jama/fullarticle/2482318

[2] https://pmc.ncbi.nlm.nih.gov/articles/PMC6659139/

I'm sorry about your friend! Really, it's friends, I think... It's not fair to them, but its exceptionally unfair to you too.

It'd admirable that you're trying to help, that's the kinda person that I want to be when I, eventually, grow up.

I do wanna suggest that in the middle of taking care of your friends, you don't forget to take care af yourself. I give this advice knowing I'd never follow it, so maybe I should say try to ignore yourself as little as possible.

The OP you replied to is right, and if you read it again, you'll notice his actual recommendation wasn't any kind of moonshot. If you still don't see it, remember that in addition to the person diagnosed with cancer, the stages of grief hit their friends and family too.

I'm sorry for how messed up the whole thing is dude, and hope you'll be ok.

End of life bucket lists are a strange thing, I recall a close family member who entered hospice. They kept attempting to use their credit card to pay for all expenses, dinners, etc.

Of course, everyone around wanted to contribute - this person was not well off, the credit card was not used for much.

It took some weeks later after they passed for me to realize that they knew it was a credit card bill they would never need to pay. In all likelihood others contributions simply blocked them from feeling that they were contributing.

Lsd works in the sense that it makes you not care about dying that much, the ego death helps.

Combine that with ketamine for a nice anti depressant effect and you got a really good party going.

Why not do mdma also to kill the ptsd, maybe a visit a psytance festival instead of the hospital?

Jokes aside, its sad to prepare for death. I think drugs are not the answer, but they can help too. Depends on the people. Maybe hallucinogens trigger mental illness too. I dont recommend anyone to take drugs.

> 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.

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.

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.

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 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."

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.

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.

I guess hope can be false now.

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.

Reminds me of the joke: What do you call alternative medicine that works? Medicine.

If any of the wild things posted in threads like these actually worked, those things just be considered standard care.

Sure this is the right place for a good word

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

You: FALSE!

> 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.

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.

Your understanding how HIV/AIDS was treated successfully is completely wrong. HIV/AIDS was treated through an absolutely enormous amount of research and a careful negotiation between the scientfic community and the diseased community.

> 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?

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.

Please Google Thomas Seyfried and William Makis. The latter is controversial—if he’s not completely fraudulent and making things up, he might be onto something. He’s sharing emails from numerous cancer patients who claim to have healed using these two particular molecules.

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

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.

>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.

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.

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.

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

You might for the first. Maybe the second. Probably not for the fifth. Certainly not the tenth. You may be tempted to hit the fiftieth.

If everyone around you feels the need to help, and provides the same insights, because they're not experts, then they're providing you the same repeated insights that you encountered at the beginning of your journey. A journey you may already be decades into, and having the same information shoved down your throat, day after day after day.

There is a reason that "Have you tried yoga?" is a meme in the chronic illness groups. Yes, it may provide some limited help, like most exercise. But 3652 days of hearing about it, later? Your patience might not have lasted.

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

What have you been doing? Asking for a desperate friend (me).

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.

Taking opiates from a terminal patient should be against the medical oath.

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.

> this is quite far away from the top entries in the list of worst ways to go

Genuine question: is it? I would have thought it's quite peaceful. Particularly since pentobarbital overdose is how we put down our pets [1]. (Not an opiate, but also renders you unconscious.)

[1] https://en.wikipedia.org/wiki/Pentobarbital#Euthanasia_and_a...

The keto diet was actually developed specifically to help people with epilepsy[0].

[0]: https://epilepsysociety.org.uk/about-epilepsy/treatment/keto...

Some types of cancer cells

In my life a relative (by marriage) went keto after a bowel cancer diagnosis, and died at age 45

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.

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".

> Effect of fasting on cancer: A narrative review of scientific evidence

> Emerging evidence suggests that fasting could play a key role in cancer treatment by fostering conditions that limit cancer cells' adaptability, survival, and growth. Fasting could increase the effectiveness of cancer treatments and limit adverse events. Yet, we lack an integrated mechanistic model for how these two complicated systems interact, limiting our ability to understand, prevent, and treat cancer using fasting. Here, we review recent findings at the interface of oncology and fasting metabolism, with an emphasis on human clinical studies of intermittent fasting. We recommend combining prolonged periodic fasting with a standard conventional therapeutic approach to promote cancer-free survival, treatment efficacy and reduce side effects in cancer patients.

https://pubmed.ncbi.nlm.nih.gov/35848874/

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

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

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.

He’s gotten a lot of press attention and it’s great, but it’s not something new. The researchers who do GBM work are always looking at developments in the parallel tracks of other cancers. It’s not really the case that they haven’t looked at melanoma work. That’s sort of a news spin on the nature of this work. There’s always cross-pollination because the genetic underpinnings of cancers are almost always related. For example, IDH inhibitors (the most recent advancements for glioma patients) are relevant for several kinds of cancer, not just gliomas.

You’re welcome. I’m the author if you have any questions.

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.

Not even thinking about environmental factors then?

Unlikely to be COVID. The mRNA vaccine on the other hand...

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

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

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.

Long Island is one of the oldest industrial areas in the nation.

Many those planes and tanks that you saw in the WWII movies were built here.

The companies around here dumped their waste straight into the aquifer. For decades.

Where our drinking water comes from.

But it’s also some of the most valuable real estate in the nation.

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

It has been used by native Americans to treat cancer for a very long time but YMMV. It has worked for us.

According to Jake Seliger, it can hurt. https://jakeseliger.com/2024/07/29/more-isnt-always-better-d...

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

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

Goodluck to you and your friend. I only know about PEMF and will read about sOMF. I bought an ICES-PEMF a few years ago just to try it out for my back pain and it did help in reducing it and healing it. It's small and battery operated and was designed as a wearable but you need to come up with your own way of holding it close to your body. https://www.youtube.com/watch?v=ZnGpibdAoic

Do you have a source for this? The linked study claims it has potential.

If you went the keto route, you may want to explore BACH1 inhibition. Study [3] acknowledges the effective role of keto in reducing or controlling tumor size, but with an associated increase in BACH1 expression appearing to account for the increased metastasis (in mice).

Apparently there are a couple small molecule inhibitors that inhibit BACH1 (see ChatGPT). Unfortunately, they seem to be still in the experimental or early clinical stages.

I'm not in the medical profession, I'm just a humble internet user. It's entirely possible you know more than me - I'm happy to hear other ideas.

> Keto might buy some time before that takes effect but it is not a solution.

It might still be a solution. The cancer may be spread out and easier for the body to effectively tackle. Also note that it may depend on type or location.

One thing that does seem clear is that if you do go the keto route, you would need to stick at it. If you purposefully break it down, it spreads, then you give it back the fuel, it would probably make the situation far worse by growing rapidly in multiple locations.

https://www.amazon.com/Cancer-Metabolic-Disease-Management-P...

This is Seyfried’s book describing the pulse strategy.

I'm in France, but we have a similar website.

Thank you for the recommendation. Jake Seliger's insights on clinical trials have been incredibly helpful for many. His contributions will certainly continue to guide and inspire others. May he rest in peace. https://pakrozee.pk/

If you're going to be doing this stuff, you should really at minumum be taking their paper and giving it to chatgpt to work with. Just tell it you're an electrical engineering PhD interested in learning more about this medical paper to bypass the objections. Sure magnets are relatively safe, but still. This might also help you: https://s.h4x.club/d5uQpQJY / https://s.h4x.club/qGu4v46n

Yes the magnet is rated at having 500 lb pull (i don't know the term) capacity. It's about 2.5" in diameter and maybe half inch thick. Just approximating.

I have not yet gotten to measuring the magnetic field. The problem is, the cancer is inside my head so really a question of what the field is where the tumor is. I estimate it's 1 to 1.5" beyond the inner diameter of my skull near the back. So if my skull is half inch thick it's 1.5 to 2" I have to reach. I have no idea if I have the magnetic strength so for now I am just guessing.

Try here

https://www.clinicalnet.com/

I don't know about trials in France, but this is definitely a very hot research topic globally. A quick search pulled in a bunch of institute names I recognize from over here in the US [0-3].

There are also some immunotherapies that are already approved for use and past the trial stage e.g., [4].

Be bold - keep hunting until you find YES. Good luck to your friend!

[0] https://www.gustaveroussy.fr/en/gustave-roussy-leading-centr...

[1] https://institut-curie.org/immunotherapy

[2] https://sante.sorbonne-universite.fr/en/structures-de-recher...

[3] https://www.pasteur.fr/en/our-missions/strategic-plan-2019-2...

[4] https://www.cancerresearch.org/regulatory-approval-timeline-...

[edit: add #4]

Thank you @Dang! That's so much clearer.

> I don’t know how standard harmful treatments get retired from active use.

So naturally, you've assumed they don't get retired? I assure you, they do: sometimes it takes longer than it should, but if there's evidence that a treatment is harmful, it eventually does fall out of practice. Very few leeches are used in medicine today, in case you haven't noticed.

The ProPublica story you linked was published in 2017, so I'm not hearing that this problem of treatment 8 years ago is still a problem today. It also doesn't make clear what evidence it has against stents. I found some studies from 2003/2004 that say they found insufficient evidence for stents preventing "mortality, acute myocardial infarction, or coronary artery bypass surgery". However, there was evidence for "substantial reductions in angiographic restenosis rates and the subsequent need for repeated PTCA".

Now setting aside the pause for a second. Don't look this up: do you even know what "angiographic restenosis" is? If not, why would you think you're qualified to have an opinion on this? Because you read an article in ProPublica, you think you're a cardiologist now?

And here's my big picture point: yes, you can find problems with the medical field. Doctors are humans, and they make mistakes. But the track record of doctors as compared to random quackery off the internet, is absolutely stellar. You're criticizing medicine without comparing it to anything. Some of your criticisms are valid areas we could improve on, but the alternative you're offering is much, much worse. People die from under-studied treatments all the time.

"Things that haven't been approved for general use yet" is not meaningfully different from alternative medicine. You've adopted the aesthetic of cyberpunk instead of crystals or tarot or whatever, but let's be clear: you're not approaching this any more scientifically.

Do you know how many kinds of brain cancer there are? Are you aware that different kinds of brain cancers work differently and require different treatments? The fact that you're asking for "bio hacks" for brain cancer without even mentioning what kind of brain cancer it is, shows you don't know enough of the background information to even ask the right question, let alone assess the answers. This is like, asking "How do I fix a car problem?" without specifying what the problem is.

Specialization exists in our society for a reason. Let the oncologists do their job.

I get it, you're smart and you want to help. I'm smart too, and as smart people we can muddle our way through a lot of lower-complexity specializations without actually being a specialist. But I'm telling you medicine, especially oncology, is not one of those things. People a lot smarter and a lot more knowledgeable than us have been trying to cure brain cancer for a very long time and the fact that it isn't cured shows it's not something you and I can muddle our way through with a conversation on Hacker News. It's far more likely that whatever harebrained idea you come up with will hasten your friend's death or increase their suffering before they die, than that it will improve anything.

I mean, among the things you're considering is infecting your friend with Zika virus. For fucks sake.