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

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

#341

Earlier quoted context omitted.

I have a friend who is an MD, and he recently asked me what I’ve been doing to manage my seborrheic dermatitis. Since dermatologists have no cure for it, we often have to resort to anecdotal treatments. Moreover, big pharma doesn’t invest in studies for treatments they can’t patent. Blind trust in medical professionals isn’t necessarily wise. Anecdotal solutions still hold significant value, in my opinion

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

clear men 3in1 active carbon shampoo. avon argon oil. ketogenic diet (I do this for weight loss but it helps for SD too)

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

#342
post #228

Earlier quoted context omitted.

See the problem with this disease is that the general treatment is shit. 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.

> going to a first-class brain surgeon is no less a moonshot than any other bio hacks I can find online American "physicians received significantly less intensive care than the general population" at the end of their lives [1]. (Canadian physicians "used both intensive and palliative care more than nonphysicians" [2].) The lesson seems to be yes, go ahead and pursue your moonshots, but don't let that cloud the realit…

Agreed

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

#343
post #204

Earlier quoted context omitted.

> Addiction and other disorders are common among people with terminal or not-so-great prognosis It's horrifying that we don't just give them what they want . Who are we to judge?

I think that's a kind sentiment, but the counter arguments would be (1) they could very likely overdose and die, and (2) an addiction changes who you are, so it's not that "they" want it, it's the addiction that wants it. Your friend is the "they" before the addiction, and likely hates themselves after every time they fall off the wagon. To be clear we don't know the exact details, so we're speculating ; I could imag…

This video popped up on my YouTube recently and illustrates this idea well: https://youtu.be/JyzJrkF21MM

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

#344
post #177

Earlier quoted context omitted.

I disagree. OP is just asking for medical misinformation, and it would be irresponsible to provide it. Self-assessed confidence levels are basically useless because the most confident people are generally the most ignorant. It's causal: ignorance causes people to be confident. The more you know, the more you realize how little you know.

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

> And your contribution is to stop people from helping them

No. In the vast majority of cases, answering this question as intended isn't helping them, it's actively harming them.

> because of something about what now

You're responding to a post which explains this. If you understood the post, faking confusion is dishonest. If you didn't understand the post, you weren't qualified to disagree with it.

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

#345
post #233

Sorry to hear about your friend. Here's a joke: Q: What do you call alternative medicine that works? A: Medicine. Seriously though, "bio hacks" are no different. If these things worked, it's very likely they'd just be normal practiced oncology. Oncology isn't a subfield of medicine where researchers are overly cautious about risks. The patient is practically guaranteed to die, so even if your research has a chance of…

I'm not looking for alternative medicine, I'm looking for things that haven't been approved for general use yet.

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

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

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

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

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

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

#346

Sorry to hear about your friend. Here's a joke: Q: What do you call alternative medicine that works? A: Medicine. Seriously though, "bio hacks" are no different. If these things worked, it's very likely they'd just be normal practiced oncology. Oncology isn't a subfield of medicine where researchers are overly cautious about risks. The patient is practically guaranteed to die, so even if your research has a chance of…

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

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

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

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

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

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

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

#347
post #290

Earlier quoted context omitted.

The best care is not necessarily the best bleeding-edge treatment. Most medical jobs are only possible at all (without burning out and destroying the person doing them) through them mostly acting in accordance with best practice and training. The ultra-rich don't have markedly better survival from nasties like GBM than the rest of us, unfortunately, so if better exists, it's not something money can buy. And where som…

> The best care is not necessarily the best bleeding-edge treatment It's mostly a conceptual thing for me. As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind. For example- I do have a doctor that is a hacker/nerd/scientist that also teaches college…

> 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.

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?

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

#349
post #177

Earlier quoted context omitted.

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

> And your contribution is to stop people from helping them No. In the vast majority of cases, answering this question as intended isn't helping them, it's actively harming them. > because of something about what now You're responding to a post which explains this. If you understood the post, faking confusion is dishonest. If you didn't understand the post, you weren't qualified to disagree with it.

This removes so much agency from the people involved. If I were dying of cancer and asked for "out there" solutions, I wouldn't want people hand-wringing about whether it's morally ok to share unconfirmed theories.

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.

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

#350

Earlier quoted context omitted.

> And your contribution is to stop people from helping them No. In the vast majority of cases, answering this question as intended isn't helping them, it's actively harming them. > because of something about what now You're responding to a post which explains this. If you understood the post, faking confusion is dishonest. If you didn't understand the post, you weren't qualified to disagree with it.

This removes so much agency from the people involved. If I were dying of cancer and asked for "out there" solutions, I wouldn't want people hand-wringing about whether it's morally ok to share unconfirmed theories. 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…

> This removes so much agency from the people involved.

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.

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