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.
With two inoperable tumors the chances that chemo and radiation alone do anything more than giving him a week or two are zero.
So in that respect, going to a first-class brain surgeon is no less a moonshot than any other bio hacks I can find online.
You're just recommending the "most-accepted" moonshot.
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
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.
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.
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.
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.
Sort of. They're looking to be a good friend and assuage perceived helplessness in the face of a repeat foe. )=(From a clinical perspective, the most-useful observation in the thread may be the unusual frequency with which this person has seen GBM.)
More broadly, we tell the stories of Sancho following Don Quixote through windmills, or Sam following Frodo to Mordor, because loyalty over reality is itself a reality of humanity. Like Sancho or Sam, our role in that journey is less to weigh its merits and more to keep our hero from cliffs. That, however, means the person playing that role has to see clearly.
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.
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.
No. In the vast majority of cases, answering this question as intended isn't helping them, it's actively harming them.
> because of something about what now
You're responding to a post which explains this. If you understood the post, faking confusion is dishonest. If you didn't understand the post, you weren't qualified to disagree with it.
Gimme everything you got at all levels of certainty, and let me decide what I want to try and not try. If I decide I don't want to try anything, or none of the suggestions have enough evidence to be worth trying and I'd rather travel around the world and skydive with my wife the last few months, that's ok too!
But none of us can pretend to know what they're actually going through, we can only offer what it asked and let them decide.
No. Filling people's minds with garbage non-information does not empower them. Knowledge is power. Random bullshit ideas isn't.
> If I were dying of cancer and asked for "out there" solutions,
OP isn't dying of cancer, and as far as I can tell, their friend who is dying of cancer did not ask for solutions of any kind.
You're trying to appeal to empathy here, but as far as I can tell, the person you're asking me to empathize with doesn't exist. There is no person dying of cancer asking for Hacker News' unqualified medical advice that I'm aware of.
The vast majority of people do not share the "move fast and break things" mentality--this is actually one of the main reasons people dislike corporate culture. This is especially true with medicine. Leave the poor cancer patient alone.
> Gimme everything you got at all levels of certainty, and let me decide what I want to try and not try. If I decide I don't want to try anything, or none of the suggestions have enough evidence to be worth trying and I'd rather travel around the world and skydive with my wife the last few months, that's ok too!
Agency isn't that easy. There are myriads of advertisers and propagandists out there trying to spin a narrative, and a lot of the hare-brained ideas out there exist because someone is trying to manipulate you--to buy a product, vote for a person, etc. These people are good at what they do, and even if you catch on to a few of them and dodge their bad ideas, a lot of them are going to worm into your brain and get you to do something they want you to do. Let me reitrate: what they want you to do, not what you, at a fundamental level, want to do. That's not agency, that's you being manipulated.
There is not a shortage of information, there is a shortage of effective filters of information that separate out the truth. Humans simply are not capable of sifting through all the garbage ideas out there, and that includes you (and me!). If you open yourself up to the full stream of garbage ideas, that doesn't give you agency, that gives your agency away to the advertiser or propagandist who happens to trigger your biases most effectively. You're not doing what you want, you're doing what they've manipulated you to want.
> But none of us can pretend to know what they're actually going through, we can only offer what it asked and let them decide.
Believe it or not, OP is not the only person to have a friend dying of cancer.
A friend of mine in college was diagnosed with lymphoma late in his sophomore year and died about a year after graduation. In his last years he became increasingly hostile to the well-intentioned people who kept offering genuinely stupid ideas for how he could cure his cancer. It isn't fun for cancer patients to have to politely listen to this particularly unhealthy way of coping with their death while they are trying to cope with their own death.
Reading other accounts of people with cancer, this is a pretty common complaint.
Every proven idea started as a random bullshit idea. No one in this thread is presenting their ideas as definitive solutions as far as I see, everyone is being pretty good about providing their confidence levels and sources.
> what they want you to do, not what you, at a fundamental level, want to do
This is a whole philosophical rabbit hole about advertising and free will in general, it's not specific to OP's case so I don't really want to get into it, that discussion is better had on Reddit or some other HN thread.
As for the rest, I think this other commenter said it better than I can: https://news.ycombinator.com/item?id=42657251
No, actually, almost no proven ideas start this way. Ideas which ultimately solve problems in a complex field, generally require a great deal of expertise to discover. Penicillin was discovered by doctors, insulin was discovered by doctors.
We all love the myth of an outsider who revolutionizes a field they were excluded from, but the reality is that someone like Florence Nightingale was excluded from medicine because of her gender, not because of her lack of subject expertise. The people who make groundbreaking discoveries in a field are almost universally experts in that field.
Sure, maybe in some new field that's in its infancy, a random person has a chance of discovering something useful, but oncology isn't that--we've got centuries of study of cancers.
Really? Let's look:
> No one in this thread is presenting their ideas as definitive solutions as far as I see, everyone is being pretty good about providing their confidence levels and sources.
Really? Let's take a look:
1. "Meanwhile, it is proven that the Zika virus does kill GBM cells in humans. This is what causes microcephaly in newborns. Inoculating the Zika virus in a controlled environment yields zero risk, and has no side effects." Poster gives sources, but the sources don't say what he claims they say, because you know, randos of the internet aren't actually capable of reading medical studies.
2. "To give you the short version of the story about how it works for HER: taking bloodroot causes the cancer to shrink too small to take a biopsy, but not go into remission, and when she stops taking it per the doctors advice, it gets very large and they start talking about surgery." Seems pretty confident that there's a causal relationship between the remission and his mom poisoning herself. Luckily another poster posted this: https://jakeseliger.com/2024/07/29/more-isnt-always-better-d...
3. "Have you looked into ivermectin and fenbendazole?" Later, when criticized, user posts: "The linked study claims it has potential." User provides two linked studies. Both links DO NOT claim it has potential, because, you know, randos on the internet are not capable of reading medical studies.
Let me be clear: the confidence level of a non-oncologist in an oncological solution is worth about as much as what I flushed down the toilet this morning. These aren't confidence levels, they're arrogance levels of people thinking they know things they don't. And contrary to your claim, there are a lot of pretty "confident" people posting here about things they should have a great deal less confidence about.
> As for the rest, I think this other commenter said it better than I can:
> I'm not sure why all the hate.
The hate has been thoroughly explained, but your linked poster isn't any more capable of reading Hacker News posts than they are of reading medical journals, apparently.
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.
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.
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.
- 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.
Choosing quackery is not experimenting.
I'm not in the industry, so what do I know? But I kind of doubt there are actual, effective treatments just sitting there unmonetized in Merck's basement library because the company is slow and the process makes things difficult. Especially the kinds of things that get mentioned in HN threads that don't require any chemistry research and are pretty straightforward to test, like fasting, meditation and yoga.
But that does mean that if you have a hyper-specific rare disease, the person who is willing to spend the most time thinking about it may very well be you. Or if you're living far from a major hospital and getting treated by a generalist with a heavy case load, you might be the most invested person within 500 miles of you, which is almost the same thing but better because you can still read the literature.
I wouldn't encourage the average patient to try doing rational drug design in their garage, but one could ask: "are there things that look promising that are still a year out from clinical trials?" and think about how to DIY some approximation to that.
At the extreme end of this spectrum, you have people like Beata Halassy who did just that, treating her own cancer with DIY viral therapy (https://www.nature.com/articles/d41586-024-03647-0, and please do note all the finger-wagging about how terrible and irresponsible of her it was to save her own life). Why did she have to do that instead of just going to a doctor? Because the route to the clinic is too slow. Why is the route to the clinic too slow? Because FDA has the institutional incentives that it's better that ten thousand patients die for lack of a cure than one die of quackery. Why's that? Because the FDA gets penalized for bad treatments but not for treatments that don't exist. But I say that dying of lack of a cure is not much better than dying of quackery, so we might as well minimize total deaths.
At the somewhat less extreme end, you have ideas like trying to treat GBM with Zika virus, which has a sketch of a mechanistic explanation and some support in animal models, but afaict no clinical trials yet (https://clinicaltrials.gov/search?cond=GBM&intr=Zika). Is this a cure for GBM? Complete BS? Something in between? I have no idea, which is kind of my point-- no one knows yet. Regulators probably aren't that jazzed about signing off on giving neurotropic viruses to immunocompromised patients without a lot of prior evidence that will give them cover for making that call if something goes wrong (which it totally might!). But an individual patient might look at that question with a different set of incentives.
Or consider psychiatric treatment of various mental illnesses. The best and most honest psychs I know will tell you that, past a certain point, responsiveness to a given drug is idiosyncratic and the state of the art is really just "try a bunch of stuff until something works", without much concern for hypotheses about underlying mechanisms. Is that rational medicine or bro science? Something in between, I think. And is it possible that there are behavioral protocols that help one particular schizophrenia patient to manage their quality of life better than the standard of care as defined for the entire population? Given that no one really agrees about what schizophrenia even is, this seems not totally impossible.
And then at the other end of the spectrum you basically have lifestyle interventions, as you note. Almost everyone agrees that certain of these are good for you, but some are really difficult to implement and adhere to. It seems reasonable to self-experiment with those things.
There is substantial regulatory burden that prevents US-based companies from doing what you suggest. In fact there is regulatory burden that prevents things that 99% of American voters would prefer, like having reciprocity agreements that allow you to take any drug that had already been approved in Europe. It’s instructive to look at the case of Halassy and notice how much reflexive resistance there is to even the most self-evidently good ideas.
To make things concrete, here’s a practical idea: write down everything you eat while on a medication and rate your subjective well being everyday. Look for patterns. If anything jumps out at you, try eliminating it and seeing if your subjective wellbeing improves. Is this method fool-proof and without failure modes? Of course not. Is the prior probability that you’re eating at least one thing that’s unknowingly contraindicated for your condition / treatment pair very low? Also no.
My model is that the rate limiting factor for spotting unknown contraindications mostly just individual attention / discipline, so EMH arguments are unresponsive to this factor.
Consider the following argument: if obesity were such a big health problem, why is everyone fat? Mostly because losing weight is really hard, which I sympathize with but don’t take as an indication that it’s impossible to do anything about it.
In fact we don’t even have to bring disease into it at all. I’m sure that if i did a systematic elimination diet i would find one or two common foods that really didn’t agree with me, which i could make noticeable differences in QoL by avoiding. Why don’t I? Mostly because I’m just too lazy, and I’m fine with copping to that. But i don’t think it’s crazy for someone to choose otherwise, especially if they had a higher upside.
Anyone surviving more than a handful of years with something like that is an outlier such as to merit a full work-back, and at that point it's no longer bro science.
Those people largely just die, no matter what you do — that’s what makes it a “highest-grade nasty”.
Things that could be solved by random discoveries are no longer considered the highest-grade nasties. There were a lot more intractably fatal conditions in 1870 than there are today.
So the likelihood of there being answers that could have been randomly discovered by medics with 1870 or 1920 levels of knowledge is tiny. At the same time, the sum of human knowledge has expanded so rapidly since then, it's not impossible for stuff to get missed.
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.
I said nothing about how a terminally ill person should process anything. I stated what I have found to provide the best outcome when a person close to you has a terminal disease. If OP said 'my friend asked me to research...' I would have given a different response/no response.
But when OP makes it look like this is an initiative OP took upon themselves, for themselves, because they have lost too many friends, then yeah, I'm going to highlight that might not be the best possible position to come from if OP wants the best outcome for their friend. My response about outcomes it totally valid since OP asked for help with outcomes.
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.
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.
That said, "a food that cures cancer when eaten" is not the bar for experimentation. More realistic might be something like "a dietary or behavioral protocol that, in some way, ameliorates this or that illness".
For organisms with our body plan, "a cure for cancer" is like talking about "a cure for defection". But clearly there's "stuff that is efficacious against particular instances of cancer", a lot of which we found through techniques like natural product screens, i.e. "just trying stuff", rather than via rational drug design.
It is 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.
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...
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.
Most medical jobs are only possible at all (without burning out and destroying the person doing them) through them mostly acting in accordance with best practice and training.
The ultra-rich don't have markedly better survival from nasties like GBM than the rest of us, unfortunately, so if better exists, it's not something money can buy.
And where some degree of survival can indeed be bought, the medical industry does at least have a solid record of scaling it out to the professional classes, even if the poor go without.
It's mostly a conceptual thing for me. As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind.
For example- I do have a doctor that is a hacker/nerd/scientist that also teaches college biochem courses for fun on the side and he was about to prescribe me a medication, but then based on an offhand comment I had made, realized I've had a number of bad reactions to medications that he knew off the top of his head were metabolized by the same liver enzyme as this new medication. This guy keeps a book about drug metabolism biochemistry on his desk, and the cover is nearly worn off from use.
I most likely have a SNP in that enzyme, that would have given me another bad reaction. This is deep nerdy biochem knowledge he was not going to get from any official protocol that led to better and safer care. The biggest problem here is we like geeking out on this stuff so much, he almost forgets to actually treat me when I visit him.
I've had other doctors that even if I had noticed the potential P450 enzyme issue myself, would refuse to listen because they have a fundamentally non-technical mindset, combined with ego issues about being the expert- that are usually made worse not better if I mention that I have professional expertise and training on the underlying biology.
In truth, I'll admit it is both quite rare to get any real benefit, and legally risky for the doctor to deviate from guidelines based on direct knowledge or understanding.
I recognize your appeal to community here, and I reject it: this isn't the hacker/nerd/scientist mindset, this is just you inverting the appeal to authority. Hackers/scientists don't accept statements as facts because they come from authority, but they also don't reject statements as facts because they come from authority. Authority is not a basis for accepting OR rejecting facts--authority is completely irrelevant in the establishment of whether something is factual. The hacker/scientist mindset doesn't require that the person in front of you understand the reasoning/evidence behind the protocol--it only requires that there exists valid reasoning/evidence behind the protocol.
Notably, in this case, the vague "some authority" you refer to is generally an organization that has collected a lot of reasoning and evidence on which to base their official protocols. The general practitioner doesn't understand all that reasoning and evidence because they can't--the human body is way too complex for one person to synthesize all the data on all the various things that could go wrong and treatments. Your general practitioner is merely there to execute treatment accurately, not to understand the treatment. Executing the treatment accurately is bloody hard enough.
If you don't trust the authority to do the research and come up with effective protocols, that's one thing, but if you don't trust the guy in front of you to execute the protocol accurately, because they don't understand all the reasoning behind it, it's you that's being irrational. Basing your opinions in reasoning and evidence is good; rejecting protocols which have been reasoned and evidenced because of some weird variant of identity politics isn't good.
Ask yourself this: Do you really understand how an OTC allergy pill works? Do you trust yourself to administer one to yourself? Why doesn't your hacker/nerd/scientist mindset prevent you from trusting yourself to administer a pill, then?
I fundamentally reject that experts can make universal medical protocols that can be blindly applied by ignorant practitioners without high rates of really bad outcomes. It is done to execute cheap commodity medicine at scale, but it will never compare to having medical care from someone with deep understanding and individual context.
These type of context-free ignorant protocols will frequently do things to patients that are wildly inappropriate and dangerous in a way that would be obvious to people that actually know what they are doing, but completely missed by the average doctor. For example, a patient with regular bloodwork where every single kidney function related lab result is on the very edge of the acceptable range, but they're all marked green by some official cutoff, so the doctor doesn't even notice the biological pattern being presented- and is blindsided when the patient comes back later on with serious nephropathy.
Even worse- intelligent people that understand the evidence and the biology will self select out of even participating in developing such protocols- because the whole concept is nonsense. So these protocols are themselves mostly ignorant and outdated, and not developed by competent people.
One cannot commodify technical knowledge into simple protocols, especially with something as complex and poorly understood as biology. The only time this is optimal is in something extremely routine with no impossible to anticipate exceptions, or in an emergency where there is no time for careful problem solving: e.g. as checklists are used in aviation. In medicine they are only appropriate for first aid type situations.
Yes, when I have a health problem I generally read the scientific literature and understand it before accepting any treatment, unless it is an emergency where I am unable to. I do understand the mechanism of action for most of the OTC drugs (or as much as is known of them), and I am much more reluctant to administer OTC drugs to myself than most people are. For example, I would not take a Benadryl unless I was having a serious allergic reaction, because of the known risks of anticholinergics. I have a decades of training and scientific research experience in studying and modeling the biological mechanisms of drugs, and have patented drugs that are in clinical trial.
The following quote sums up my opinion of medical protocols better than I can:
"Knowledge isn’t a commodity, especially not a fungible commodity, as the medical business sees it. Consciousness and culture are part of the life process. It is exactly the commoditization of medical knowledge that makes it dangerous, and generally stupid. Doctors buy their knowledge, and then resell it over and over; it’s valuable as a commodity, so its value has to be protected by the equivalent of a copyright, the system of laws establishing the profession. Without its special status, its worthlessness would be quickly demonstrated. When A.C. Guyton wrote his textbook of medical physiology (the most widely used text in the world) in the 1950s, it was trash; as it was studied and applied by generations of physicians, it was still trash. The most compliant patients who bought their treatment from the most authoritative, Guytonesque, doctors were buying their own disability and death.
Each time you learn something, your consciousness becomes something different, and the questions you ask will be different; you don’t know what the next appropriate question will be when you haven’t assimilated the earlier answers. Until you see something as the answer to an urgent question, you can’t see that it has any value. The unexpected can’t be a commodity. When people buy professional knowledge they get what they pay for, a commodity in a system that sustains ignorance." -Ray Peat, PhD
> And thys vyce cometh of false hope that he thynketh he thall lyue longe, but that hope fayleth ful ofte.
[1] https://www.google.com/books/edition/The_Workes_of_Geffray_C... [2] https://books.google.com/ngrams/graph?content=false+hope&yea...
Or, come to that, "at least since Cicero's time":
> ...cui legi cum vestra dignitas vehementer adversetur, istius spes falsa et insignis impudentia maxime suffragatur.
[3] https://anastrophe.uchicago.edu/cgi-bin/perseus/citequery3.p...
If I encourage my friend who is down on their luck to buy lottery tickets so they can have hope, am I helping them, am I being kind?
"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].
False hope is still a form of hope in the same way a red car is still a car.
And it’s useful to delineate it. Hope is rooted in expectation. When we watch a film about a fraudster, the dramatic irony arises from the audience knowing the rube is being played even while the rube is quite hopeful. We may conclude it’s better for the victim to live in false hope. But again, it’s useful to understand it’s a hope that’s false (and that someone is making that decision for them).
I agree people should be informed and manage their expectations. My issue is that it’s a terrible expression that gets misapplied constantly.
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.
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.
I get what you want and why you are here, I do. Been there done that for friends and family. I lost my mom, don't think I didn't try to find every treatment, and for me she did them all no matter the pain/loss in quality of life it inflicted on her. In the end watching Joel Olsteen gave my hippie/anti christian progressive mom comfort so guess what, anti-organized religion me sat and watched Joel friggen Olsteen with her as she accepted and processed her situation, while inside I screamed 'noooooooo, we can't accept this! NOOOOOOOOOOOOO! Mom no, I can't lose you, and our final time can't be spent watching Joel friggen Olsteen!'. And on that final day, when she was suffering in worse pain than I can Imagine, I put on a brave face and told here it was OK mom, she can go now, she can have peace now, while inside I screamed 'you can not goooo! The world will end if you go!!!! You can't leave me, ever'.
Do you really think anyone is saying 'you can go now' inside when they tell someone it's OK to go? Do you really think everyone thinks their local medical care is the absolutely best in the world when they say 'man, good thing you got Doctor X, good thing we have this facility'?
Sorry for what you went through though, sounds like it was really painful.
However, when you know you have certain disease there is nothing like talking to an expert in the field. Internet is filled with garbage and misinformation now. People selling snake oil.
HackerNews is also filled with people who think they know better than experts because they can write code.
If any of the wild things posted in threads like these actually worked, those things just be considered standard care.
I've seen a well regarded specials for a neurological issue I am having. She knows everything I've learned over the years and all about emerging research and treatments.
Suggested supplements I already knew about and meds. Also, said nothing is a silver bullet.
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.
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 suspect you are removing so much nuance and context as to make a reasonable idea seem quite stupid. Do you have a reference to that specific claim?
His general approach is to figure out what biological systems are impaired in a particular health condition, and rationally think through the possible underlying bottlenecks and regulation - including things like the nutrient substrates for metabolism, and hormones that trade off metabolic energy between different systems.
At a philosophical level, he was generally opposed to any type of prescription or protocol that claims to "cure almost any[thing]" and emphasizes the need to understand the individual context and biology for a certain situation. He flat out refused to give any general health or diet protocols, and only said what he did for himself in very specific situations related to his own personal health problems- which ignorant people with no biological knowledge have inappropriately tried to translate into general prescriptions and diet protocols.
They're cargo culting his personal diet, etc. when really following his philosophy would involve deeply studying and understanding the biology with an open mind, and thinking of creative solutions on your own.
If one is treating him as an authority, and copying what he did or said personally, they are already entirely missing the point, and acting completely against his actual philosophy of problem solving. His goal was mostly to strip authoritarianism from medicine, and replace it with an orientation towards personal deep understanding and creative problem solving.
It is my belief that people are so conditioned to expect simple nonsense "universal protocols" from both mainstream and alternative medicine, they refuse to listen when his whole point is to get people out of that kind of thinking... and try to still extract them from whatever he says.
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.
What? how did people take things into their own hands?
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.
> 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/
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!
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.
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.
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.
But generally you can just ask something like "Will it be fine with you if you I share a piece of advice?"
This works even better if you tell why you think this might be relevant at all (for example if you have some expertise or have a very similar experience yourself).
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.
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.
b) In most cases there are just a few things or no things that actually might work. But there's thousands of ideas floating around of what people say might help. Ranging from "you must eat a spoonful of this spice daily" to "there's this small lab on the other site of the planet that make this expensive substance that will cure you but what they do isn't technically legal and might kill you".
You sure? There's people commenting "just checked google scholar" and naming random plants without citing anything.
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.
second: speaking to them about their plight isn't the struggle; DEATH IS -- and we're all in that same boat.
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.
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...
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.
It's horrifying that we don't just give them what they want. Who are we to judge?
I'd say 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...
We have no known way to know this.
Or maybe his death was an outlier .pain meds are well tolerated by most people.
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.
[0]: https://epilepsysociety.org.uk/about-epilepsy/treatment/keto...
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.
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
Sugar is the food cancer cells crave. Not a miracle cure but restricting sugars may help reduce the growth of the tumor.
e.g. https://news.cancerresearchuk.org/2023/08/16/sugar-and-cance...
Your brain _only_ operates on glucose, you'll never run out unless something is seriously wrong with your body.
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.
That said, the keto diet is being studied clinically and preliminary research does seem to indicate that it has an effect. So it may be an "in addition to" treatment. That said, the news isn't entirely good:
https://www.cancer.columbia.edu/news/study-finds-keto-diet-c...
The bottom line is ask your oncologist. They're probably paying attention to these keto studies and they know more about your cancer than HN does.
https://www.redpenreviews.org/reviews/the-china-study-the-mo...
If diet stopped cancer, then the patients who eat less would see noticeable effect. This has never happened, except for maybe Otto Warburg, but even that is disputable[1].
[1] https://physoc.onlinelibrary.wiley.com/doi/10.1113/JP278810
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.
> 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.
>> 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.
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/
You have “trust me bro!” to dispute that.
Please stop spreading misinformation.
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
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.
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.
If anybody with an open mind reads this: plasmid DNA contamination / insertional mutagenesis (use a source that hasn't been altered by the pharma industry for cover up)
I am sorry about your friends.
https://amp.cancer.org/cancer/risk-prevention/chemicals/burn...
It's anecdotal, of course, but I've always thought that there could have been a connection.
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.
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.
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.
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?
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.
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.
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.It advertises itself as a natural tumour growth inhibitor.
"For 4-hour treatment:
Reduced DIPG cells by >80% Reduced GBM cells by >60%"
If this is the understood mechanism and it has measurable results, why isn't this in widespread use?
>> Unfortunately, there have been no reports of clinical trials of IVM as an anticancer drug. There are still some problems that need to be studied and resolved before IVM is used in the clinic.
The method of action of ivermectin is well known. Lots of articles state it works against COVID-19, but clinical trials have proven this to be false. Yet people still cling FOOLISHLY to that idea, and now creeping into cancer. But, it's GREAT against parasites!
https://www.sciencedirect.com/science/article/pii/S022352342...
>> What is important, ivermectin does not cross the blood-brain barrier, and therefore, does not affect mammals, including humans, in which GABA receptors are located mainly in the central nervous system. Nevertheless, accumulation of ivermectin in the human brain has been observed after administration of doses about 100 times higher than the recommended one.
There appears to be some initial idea of using keto to control cancer [1]. My working theory is that cancer is a high-replication cell, and the ketogenic diet is anti-growth, increasing the probability of it outgrowing the resources available. It appears possible to starve them of glucose [2].
In reality, it appears the keto diet may encourage metastatis, by promoting BACH1 [3]. You may end up with weaker cancer spread around the body. It's extremely unclear if this is a better situation or not.
[1] https://pmc.ncbi.nlm.nih.gov/articles/PMC6375425/
[2] https://www.sciencedirect.com/science/article/abs/pii/S08999...
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.
> 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.
Thank you for your help.
This is Seyfried’s book describing the pulse strategy.
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?
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.
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).
Cancer in the Cold - https://news.ycombinator.com/item?id=32440688 - Aug 2022 (99 comments)
Otherwise, if they prefer to spend their time in other ways, support them in that.
"False hope" is kind of an oxymoron. Hope is never easy to have. Fortunately it's not required. You can accept death and still find enjoyment/distraction in self-experimentation.
If there is a case of even mild dysautonomia various meds like modafinil and amitriptyline can help along this axis.
Unfortunately the classic easy external way it’s done isn’t the best fit for brain application, as it’s literally heating the body up in a sauna to a point where heat reactive proteins are generated. This forces the cancer to either open up various cellular transport mechanisms (announcing itself to the immune system) or denature (and die). This is repeated multiple times, and can actually be so effective and the doctor overseeeing the treatment needs to be careful not to kill off too much cancer at once if there is a large amount, due to the resulting necrosis.
However related to this for deep body use is using radiation devices or probes to heat tumorous areas deeper in the body, or outright use laser probes to not-quite-burn places. This can allow access to otherwise inoperable tumors. See Laser interstitial thermal therapy (LITT)
https://www.barnesjewish.org/Medical-Services/Neurology-Neur...
https://my.clevelandclinic.org/health/treatments/17114-hyper...
Hyperthermia therapies are lesser known for some tragic reason, but they are FDA approved.
Yes, I HAVE used the spinning oscillating magnetic field. I don't know that I am doing it right but I have the following setup and have been doing this for a month. I simply connected a large round 500lb neodynium magnet to a drill. I set the drill to oscillate for 2 seconds rapidly and then slow down to near stopping for 1 second. This results in it continually spinning up and down. Since I don't know the ideal frequency I am trying to hit ALL frequencies.
This is just a burner account but i am a very real person. If I lose my credentials, I may have to create yet another account. I apologize if that happens.
I know it's not appropriate but god bless you. Let's keep sharing. I appreciate you starting this up.
By 500lb, you mean its pulling force, right? Thought it was the weight of the magnet for one second. And just making sure, by "round" you mean cylinder with diametric polarization?
Do you use any tool for measuring the strength of the magnetic field?
Good luck to you.
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.
[0]: https://hub.jhu.edu/2023/04/24/mouse-brain-tumors-glioblasto...
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.
>I've had patients successfully cure ulcers, cancers, migraines, obesity, hypertension, allergies, depression and many other ailments by following the principles I share with you in this book. I am not suggesting that Ayurveda is a panacea. No system of medicine is. But, when you combine the principles of Ayurveda with the yogic thought, you make a giant leap in your understanding of the human body and its wellbeing. In this book, I introduce you to a holistic system of health and wellness. My goal is not to give you herbal remedies, because once again I don't wish to treat the symptoms. Besides, I'm not a medical professional but a meditation specialist and a tantric practitioner. There are plenty of Ayurvedic doctors out there you can consult for medicine. Having said that, chances are, once you adopt the principles and practices I am sharing here, you will not need to see a doctor again. For a healthy and a long life, the ancient yogic thought offers you one of the most insightful, complete and scientific perspectives. I promise by the time you finish reading this book, you will look upon your body and your health in a new way. You will learn how to take care of it better, you will know how to lead a healthier life in our present world
0: https://www.amazon.com/Wellness-Sense-Practical-Emotional-Ay...
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...
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]
" The tumor had spread to his brain stem and was shortly expected to kill him. Muizelaar cut out as much of the tumor as possible. But before he replaced the “bone flap”—the section of skull that is removed to allow access to the brain—he soaked it for an hour in a solution teeming with Enterobacter aerogenes, a common fecal bacterium. Then he reattached it to Egan’s skull, using tiny metal plates and screws. Muizelaar hoped that inside Egan’s brain an infection was brewing."
The scientists did get penalised for it but as a hail mary it might be worth investigating. My best wishes for your friend.
That some doctor discouraged your brother to take a last vacation with his kids is beyond my comprehension. It's great that he did it anyways.
Do your own research, I came across this avenue but I personally know nobody who tried this https://www.burzynskiclinic.com/
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/
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...
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
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.
Ketogenic Diet in the Treatment of Gliomas and Glioblastomas
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
Ask HN: Help with Glioblastoma - https://news.ycombinator.com/item?id=41299748 - Aug 2024 (11 comments)
Researchers develop treatment that can kill glioblastoma cells in brain pathway - https://news.ycombinator.com/item?id=41144021 - Aug 2024 (19 comments)
Doctor cancer free after novel glioblastoma self-treatment - https://news.ycombinator.com/item?id=40373382 - May 2024 (2 comments)
mRNA Cancer Vaccine Reprograms Immune System to Tackle Glioblastoma in 48 Hours - https://news.ycombinator.com/item?id=40231515 - May 2024 (230 comments)
Man lives 10 mo without recurrence after groundbreaking glioblastoma treatment - https://news.ycombinator.com/item?id=39759022 - March 2024 (4 comments)
Blood–brain barrier opening with ultrasound device in patients with glioblastoma - https://news.ycombinator.com/item?id=35853217 - May 2023 (31 comments)
Study kills glioblastoma by manipulating brain's astrocytes - https://news.ycombinator.com/item?id=33076921 - Oct 2022 (0 comments)
Precision Oncology: Epigenetic Patterns Predict Glioblastoma Outcomes - https://news.ycombinator.com/item?id=13117386 - Dec 2016 (10 comments)
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.
> 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
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.
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.
I don’t deny that smart people are trying to cure cancer. And I don’t pretend to be above them.
My point mostly is that I am reading about promising technology in the medical literature that is not through the clinical trials yet. So it is not available to the general public.
What I know is that the current available treatments are generally not working well. I don’t think my friend will last more than 6 months.
So what I am asking the community is: has anyone DIYed any of the promising technology and obtained any results. Seems fairly reasonable in a life and death situation.
As a matter of fact, someone who has GBM has indeed done just that (see in the thread). Unfortunately his experiment just started, so I can’t know if it worked for him or not yet.
Regarding Zika, yes it looks like it could work. You may not be able to do this at scale. I don’t have a clue. But if it was me, I’d book my flight to Brazil on the day of the diagnosis. A lot of people got Zika, the world didn’t end.
I don’t understand why people can’t stomach the Zika idea. A ton of medical research involves infecting people with live viruses.
https://www.bbc.com/future/article/20240823-why-some-people-...
Which kind of GBM? You're aware there are different kinds, right?
> So what I am asking the community is: has anyone DIYed any of the promising technology and obtained any results. Seems fairly reasonable in a life and death situation.
> As a matter of fact, someone who has GBM has indeed done just that (see in the thread). Unfortunately his experiment just started, so I can’t know if it worked for him or not yet.
And if his GBM does go into remission, you still won't know if it worked for him.
In fact, no one has "indeed done just that". No one has obtained any results.
> I don’t understand why people can’t stomach the Zika idea. A ton of medical research involves infecting people with live viruses.
I can stomach infecting people with live viruses just fine.
What I can't stomach, is someone saying shit like: "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."
Uh, that's not proven, and "zero risk" and "no side effects" is not a thing in medicine. I'm not aware of any treatment for anything that has "zero risk" and "no side effects", let alone some bleeding edge treatment with a virus that has barely been studied as an infection let alone as a treatment cancers. Even the studies you linked did not say what you claim here: that's you literally making shit up. You said that, it's a quote of you, and it was dangerously incorrect.
I think it's a pretty reasonable rule of thumb that if someone says someothing has "zero risks" and "no side effects", they should be ostracized from medical conversations. You simply do not know what you are talking about and should stop talking about it, because what you are saying endangers anyone who believes you.
And as I've reiterated a few times now: you do not have cancer, so whatever harebrained grasping at straws you would do if you had cancer is irrelevant. Your friend is the one with cancer, so maybe ask them what they want before inundating them with your irresponsible, unqualified medical advice.
I am sorry about your friend, I really am. But that's not an excuse for you to spread medical misinformation.
Ok, yes you're right : medical stuff never yields zero risk nor side effects, I should have been more nuanced. And yes, Zika infection probably doesn't cure GBM either. There. Happy?
Yet, there have been clinical trials where people have voluntarily been inoculated by a live zika virus shot to test if a Zika vaccine was working. So real doctors have done it before, and on people who were not going to die 6 months later.
See here:
https://magazine.publichealth.jhu.edu/2023/how-human-challen...
So you can blame me all you want for suggesting this CrAzY IdEa, but you should also be pissed at those doctors who actually did it in clinical trials.
From my point of view the situation is:
1. There is a non-zero probability that the Zika virus aggressively attacks GBM cells, as suggested by a whole bunch of medical literature.
2. Current treatments are not working well and do induce extremely debilitating side effects.
3. There have been clinical trials where people have been voluntarily infected with Zika.
It seems to me that the logical conclusion is that we could try and cure GBM patient by infecting them with a live Zika virus, exactly the same way as we did to test the Zika vaccine.
But instead doctors say we should follow a protocol that we know doesn't work and is very heavy in terms of side effects. And people just keep dying really fast, without trying anything new.
It just pisses me off.
--
Re: my friend has cancer and not me. Is there anything I wrote that suggests I am forcing anything upon him? I haven't told him anything about the research I am looking into. You're just too angry for some reason...
I first discovered it when searching for bladder cancer therapies[1][2]
A cursory search seems to say that HA does in fact play a role in GBM[3], and that 4MU appears to reduce GBM cell proliferation[4] though it looks at a different mechanism.
In fact, there seems to be a review of its potential for treating brain cancers specifically[5]
As far as I can tell, it's a commonly prescribed drug for bile acid related issues that rarely has any side effects or risks. It appears to be safe, and to improve outcomes across many types of cancers
[1] https://www.auajournals.org/doi/full/10.1016/j.juro.2014.02....
[2] https://pmc.ncbi.nlm.nih.gov/articles/PMC11081427/
[3] https://link.springer.com/chapter/10.1007/978-94-007-7602-9_...
[4] https://www.sciencedirect.com/science/article/pii/S235230422...
[5] https://www.researchgate.net/profile/Yasser-Mustafa-3/public...
Press-Pulse approach described: https://www.youtube.com/watch?v=q7kOs6bS1Hg&t=7185s (~ keto+exercise+hyperbaric oxygen therapy+standard approaches which become more effective)
https://nutritionandmetabolism.biomedcentral.com/articles/10...
https://www.bc.edu/bc-web/bcnews/science-tech-and-health/bio...
https://www.nature.com/articles/s42003-019-0455-x
If you can, convince your friend to go on a zero-carb, zero-sugar diet that even cuts out artificial sweeteners (as they can also screw with metabolism). Get them to try to hammer their A1C down to 3.0 or less for 3+ months, so they go into extended periods of ketosis. A continuous glucose monitor can help identify spikes, which can also be moderated with 2tbsp of vinegar before each meal.
https://www.massgeneral.org/news/press-release/clinical-tria....
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
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.
University of Zagreb researcher Beata Halassy treated her breast cancer with an unproven virus-based therapy using viruses she cultivated in her own lab.
https://www.washingtonpost.com/science/2024/11/14/cancer-vir...
I have to imagine those doctors are still there doing this, it's been their life's work.
I enjoyed the read even though I don't think juicing can cure cancer. They mentioned studies where cancer cells were shrinking after dripping different juices onto them. It's mostly about eating your fruits and vegetables. The dude survived cancer without going through your typical Chemo.
is an Australian MD with glioblastoma whose treatment is immunotherapy; he is blogging (on X for example) as it's ongoing, and has been doing very well.
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.
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.
Don't want to leap to conclusions prematurely, but that might be some progress.
I saw a video on youtube -- wait, here it is: https://www.youtube.com/watch?v=ikSlMlMFS7M -- from a medical journal former editor / writer guy who cured his throat cancer or maybe it was skin cancer, but he talked about both, with topical treatments using food grade hydrogen peroxide (h2o2). (I forgot the strength he used -- maybe 35%. But do not swallow this stuff -- very harmful to ingest, only apply it topically at specific points.) Anyway he was talking about brain tumors and how for some kinds there are no good treatment options and he conjectured that injecting these kind of brain tumors with the 35%(?) h2o2 could wipe them out. This is because most cancer cells are highly susceptible to h2o2 (way more than normal cells) A brain surgeon could do this using imaging guidance, etc.
Maybe you can find a surgeon who is already doing this type of treatment in a trial perhaps.
Three other options:
1. High dose vitamin C via IV. At very high doses, Vitamin C can wipe out cancer cells via multiple mechanisms. One of these is because VitC generates ozone in the cancer cells which destroys them in a similar method as if they had been dosed with h2o2.
2a. Get into ketosis via diet -- can selectively cause cancer cell death -- something to do with mitochondria metabolism changes in cancer cells. But, getting into ketosis is super difficult.
2b. Get into ketosis by supplementing with MCT (medium chain triglycerides) from coconut oil. The C8 component of this type of oil seems to have the strongest ketosis results. C8 MCT is processed by your liver and converted into ketones. Much easier than a keto diet.
3. Follow the Gerson therapy -- https://gerson.org/the-gerson-therapy/ -- lots of fresh pressed mostly veggie juices as the main component of the diet along with other things. This can also mimic a fast (another way to selectively kill cancer cells).
I'm doing 1, 2b, and starting to do 3 for myself. None of these are expensive and they are all very safe to do and you can do 2 and 3 at home.
I live near Chicago and I'm getting standard treatment at Illinois Cancer Specialists in Niles and the IVC treatments from Raden Wellness in Highwood. I'm working with an MD Oncologist and a Naturopathic Oncologist. So far so good!
Best of luck to your friend!!!
It’s a fast track to the acceptance stage and it’ll help your friend enjoy the last part of their human experience.
https://www.hopkinsmedicine.org/news/newsroom/news-releases/...
Anthony Chaffee, Shawn Baker, and Sean Omara are strong signals and examples of what modern diets lead to: inflammation, sickness, slow death.
Significance: In conclusion, these results suggest that harmine suppresses the proliferation and migration of U251-MG and U373-MG cells by inhibiting the FAK/AKT signaling pathway. Our findings elucidate harmine could be a promising drug for glioblastoma therapy.
- Cannabis has been known to help, both with Cancer as well as feeling unwell during chemo and increasing appetite.
Best of luck
https://news.ycombinator.com/item?id=42651572
Ketogenic Diet in the Treatment of Gliomas and Glioblastomas
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.
Several people have mentioned keto diet, it also looks like a smart thing to try.
Since no virus banks will hand you out a live virus strain, your best shot is to fly to the rain forest, and get bitten by mosquitoes.
At worst, it gives you an excuse for one last trip to Thailand… you may contract dengue fever and chikungunya though, which is not exactly pleasant.
The case is not a patient, the woman caught the virus cause she lives in Brazil.
https://translational-medicine.biomedcentral.com/articles/10...
https://source.washu.edu/2021/03/zika-virus-helps-destroy-de...
But plant viruses, like cowpea mosaic, now that's a virus humans don't need to fear:
https://www.drugdiscoverynews.com/plant-virus-based-immunoth...
Search for other Thomas Seyfried videos on YouTube - he defends a metabolic approach to cancer treatment.
He writes the forward to “Keto for Cancer” - https://a.co/d/8NxMOXJ
https://www.pharmaceutical-technology.com/data-insights/inno...
Has worked for hundreds of people, and what has he got to lose? It's all natural medicines.
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.
Even before beginning conventional treatment, the McLelland protocols reduced the cancer biomarkers. It's also worth noting that there is no universal protocol in the book. Each cancer has a different metabolism requiring a different approach.
People on Twitter regularly posts links to relevant PubMed articles.
There may be nearby clinical trials for such therapies as well: https://clinicaltrials.gov/
Valter Longo is one of the world's experts on fasting. You might want to read this article of his on fasting and cancer: https://www.cell.com/trends/endocrinology-metabolism/abstrac...
____
Starvation, Stress Resistance, and Cancer Roberta Buono, Valter D. Longo
Dysregulated metabolism is one of the emerging hallmarks of cancer cells. Differential stress resistance (DSR) and differential stress sensitization (DSS) responses are the mechanisms caused by fasting and fasting-mimicking diet (FMDs) to promote protection of normal cells and induce cancer cell death. Fasting-dependent reduction in glucose and IGF-1 mediates part of the DSR and DSS effects. Fasting and FMDs have the potential for applications in both cancer prevention and treatment.
____
Either Longo or another fasting researcher pointed out that you can make a level of chemotherapy where none of the rats that are not fasting live and where all of the rats that are fasting live. So fasting is a powerful alteration of cells that makes them tolerate chemotherapy much better.
You might want to contact Alan Goldhamer of TrueNorth Health Center. They have almost four decades of experience getting fantastic results by fasting people (about 20K so far), such as curing cancers, Lupus, Diabetes, etc. See https://youtu.be/42QAyVkAS_0?t=71 or this https://www.youtube.com/watch?v=xuebTcdLIKY
The below is from a friend of mine who an M.D. told me has read so much about biomedicine that "it's as if he went to graduate school":
____
In complete contrast to chemotherapy, fasting helps pain, anxiety and depression - http://www.mindthesciencegap.org/2013/04/10/fasting-for-ment....
For general information on fasting, I recommend reading or watching Dr. Jason Fung. He is a nephrologist from Canada. His book The Obesity Code (I have read it) is selling well, but you can get the same information by watching YouTube videos, which I preferred to his book. My favorite were his early lectures that are less flashy “The Aetiology of Obesity Part 1 of 6: A New Hope” https://www.youtube.com/watch?v=YpllomiDMX0 However, if a six hour graduate lecture series is more than you want to sign on for, any of the more recent videos at www.dietdoctor.com will provide the basics.
In addition to Dr. Fung, a number of doctors are publishing articles and videos about fasting and cancer:
* Dr. Fung quoting Noble winner for autophagy - https://www.dietdoctor.com/fasting-cellular-cleansing-cancer... & https://www.dietdoctor.com/attacking-cancers-weakness-not-st...
* Dr. Seyfried - https://www.youtube.com/watch?v=SEE-oU8_NSU - he wrote a book (https://www.amazon.com/Cancer-Metabolic-Disease-Management-P...) that I have not purchased this book, but it is highly regarded and referenced by others.
* Dr. Winters - https://www.dietdoctor.com/member/presentations/winters – This is a discussion of the metabolic approach to cancer
* Dr. Poff - https://www.dietdoctor.com/can-you-treat-cancer-with-low-car... - Keto diet and cancer
Some of this is very biochemistry based and is just tons of detail saying “fasting and/or a ketogenic diet will fight cancer.” Spending the time to understand the biochemistry of the disease and visualizing what you want your body to do will help your body heal. While this sounds very touchy, feely and like voodoo medicine to a traditionally trained biochemist, the research is strong on the ability of the mental imagery to have a therapeutic benefit. (Again, I cite Dr. Rosenthal, neuroscientist, as a higher authority).
____
https://sciencebasedmedicine.org/ketogenic-diets-for-cancer-...
(4 vaguely related people getting the same aggressive brain tumor sounds worrying)
This is no longer a fringe conspiracy theorist thing (though research on it is still early and relatively sparse).
For example:
https://edition.cnn.com/2018/05/02/health/brain-tumors-cell-...
https://pmc.ncbi.nlm.nih.gov/articles/PMC5417432/
Maybe it is causing certain cancers, maybe it isn't. Science will probably know more in 10 years. But in the mean time, why take on unnecessary risk?
Cancer should be viewed from a system wide perspective in my opinion rather than a location specific disease.
If you really want to get into biohacker territory, figure out how to sequence the tumor’s mutanome distribution and then generate a mRNA vaccine encoding the unique antigen markers of the tumor.
That’s basically what these biotech companies are doing[0]. If you need pointers on where to begin your research, BNT122 is a good place to start.
Good luck. Depending on how much money your friend has, you might be able to make something happen. Consider contacting biotech companies directly.
[0]: https://www.biontech.com/int/en/home/pipeline-and-products/p...
My takeaways:
* His treatment is an experiment. It's based on techniques regularly used in melanoma treatment, but which have not previously been used for brain cancers. Clinical trials are required to tell if the success to date is due to good luck or the treatment.
* There was/is a real chance of death due to complications, particularly brain swelling or damage to other organs, from the immunotherapy. There have been complications, including liver toxicity, but the book gives the impression that these have been managed.
* The drugs themselves are commercially available, the three immunotherapy drugs used (Anti-PD-1, Anti-CTLA-4, Anti-LAG-3) being "off the shelf" and the customised vaccine was manufactured by a US based company (not a research lab).
* A major barrier to someone else trying this treatment regime is finding a medical team willing to take the risk. That was probably the biggest reason Scolyer was able to access this treatment whereas others might struggle: he and his collaborator, Georgina Long, were able to convince others that it had a reasonable chance of working.
* The novel part of the treatment was delaying the usual brain surgery and steroids and not doing chemotherapy. Instead an immediate treatment was done with immunotherapty drugs, results showing that there was no "blood-brain barrier" that stopped them from working. After about 2 weeks, surgery was performed to remove the bulk of the tumour with minimal cutting into the healthy brain. Radiotherapy was then used, along with a continuing course of the immunotherapy and a course of a vaccine customised to the genetics of Scolyer's tumour.
* Planning is underway to run clinical trials, involving research institutes in Melbourne and the US and a pharmaceutical company, to test whether the results on Scolyer are reproducible.
Preprint of the publication:
"Neoadjuvant Triplet Immune Checkpoint Blockade in Newly Diagnosed Glioblastoma" (this is the paper that documents Scolyer's treatment and results to April 2024)
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/...