This is the most supremely motivating post I've seen in a long time. I know what it is to be diagnosed with cancer, being rushed to surgery - it's amazing how quickly the medical-industrial complex can move once you've got a diagnosis (at least in Australia). I had a short period of contemplating terminally, because cancer claimed the life of most of my family. Thankfully, after surgery it was gone.
To see Sid use his motivation and resources to solve his own problem is the core message (IMHO) of the hacker community.
It makes me look at my own problem (Peyronies) in a different light; a disease which has affected my life in ways which cannot be overstated. Yet, all the money in the world right now can't fix Peyronies - yet in reading his journey my mind has been changed about this.
His slide title: "I'll talk to anyone, I'll go anywhere, and I can be there anytime" is certainly the mindset!
Thanks for posting this - I'm inspired to take similar action for Peyronie's. Anything is possible.
I commend you for speaking openly about Peyronie's, I imagine that isn't always an easy thing to do (or to deal with). Best of luck, and I hope you manage to make progress with it. Effective treatment wouldn't get as much airtime as effectice cancer treatments, but it would certainly have a positive effect on the lives of millions of men.
Several years ago I was doing advertising websites, one of our customers was (Pfizer? Bayer? both were customers) they had developed a drug against Dupuytren's contracture[1] and apparently found it effective enough against Peyronie's that we were asked to create a website describing this (possibly off label) use of that drug.
Honestly I have no idea if it was effective or not, nor do I know anything about the side effects, but just in case you were unaware of that particular option I want to put it out there.
From what I can find, doing an online search along that path it might have been Xiaflex/Xiapex by Pfizer.
(Not paid by anyone in this particular business anymore, just remembered it when I read your comment).
Thanks for your comment. I'm aware of Xiaflex, and it's been clinically proven to work against early-stage Peyronies. When the disease has reached the chronic phase (and calcified) - Xiaflex hasn't been clinically proven. Xiaflex is now on-label for treating Peyronies.
My mistake wasn't acting earlier, because I had no idea what was happening. But thank you again for your comment. Thank you!
Wish the best for Sid! My father was unlucky with his TP53 mutation which resulted in AEL and he passed away suddenly. 100% fit to vanishing away straight in 8 months. It was pretty rough for me especially to see how these doctors (most of them but bot all) are so non-experimental in their attitude.
Sid is right, Staying alive is our own job and definitely what he is doing will give him and his loved ones enough hope to get through this and sometimes he eventually he will get through.
There's a crazy story in here where Sytse invested in a click chemistry cancer research startup (Shasqi) in 2017 and ends up becoming a customer six years later.
It's mentioned in the slide deck on the url linked. I highly recommend clicking through all the slides. It's absolutely one of the most fascinating decks I've come across. His sheer will to want live is impressive and inspiring.
The linked post about his treatment is basically a vanity article; low in useful information, but high in vague assertions and platitudes. There's also a link to a post griping about the red tape someone experienced while trying to self-treat their dog's cancer that's weird. I clearly live in a different world than these people.
This is a common trope in the tech field- successful tech person who is good at tech gets disease and wants to help cure it. It's easy to generate a lot of data these days (whole genome sequencing, various tests) but the reality is that turning that data into actionable knowledge is remarkably difficult.
Much of the red tape exists to help people avoid making common mistakes that aren't obvious until you've been through the process a number of times (other red tape just exists to gatekeep unnecessarily).
It's wild to me to hear this being spun as vanity, like it's some influencer clickbait or linkedin slop. You could argue anyone posting anything online is driven by vanity, but in this case we're talking about someone who took agency in his own medical outcome, and essentially experimented on himself. Sure it was selfish in the sense that he didn't want to die and he bent all his effort and resources to it, so what? I don't see exercising ones will-to-live in this way being a huge moral gray area. Other commenters are saying why don't we fund more research? Well sure we should do that too, but it's important to recognize that the type of approach he took here only works because it was one individual willing to combine a significant amount of personal effort with his own moral authority to try out risky things on himself. Even with orders of magnitude more funding, you can't ethically do this kind of thing without the consent of the patients, and there's not enough data on these types of approaches to adequately describe the risks to patients if they aren't specifically motivated to lean into the details like this guy did.
A very motivating post. What he said “It became my own job to keep myself alive. Nobody else was going to do it for me at this point” really stayed with me. It’s powerful to see someone take that level of responsibility in such a difficult situation. I also appreciate how his ability to fund his own treatment can end up benefiting the broader community. Wishing him the best. Cancer is awful, and it just took one of my professor life just a few months ago.
Maybe it's time for him to give the metabolic cancer theory a go and try to bump up his mitochondrial function as much as possible? It's practically untestable due to science testing all compounds in isolation instead of a cocktail over longer period of time that can't be properly controlled even if it might be true. Every single cancer cell has a damaged mitochondria and often switching it properly on leads to cancer cell's apoptosis. He should also take desloratadine as some Swedish hospital observational study showed a significantly increased survivability on all tumor types with it. Some people had success with the combination of DCA, R-ALA, B1 HCl megadoses >2g, CoQ10 + PQQ, glucosidic astaxanthin, nattokinase/serrapeptase/lumbrokinase, low-dose aspirin, pancreatic enzymes and lactoferrin, with complete removal of fructose from the diet (as the cancer explosion can be correlated with years when fructose started getting introduced into diet in large quantities).
You said it’s untestable but then said a Swedish hospital did a study on it? I don’t see why things can’t be tested over a long term. There are many such studies.
This is wonderful but I feel bad for all the people who doesnt have the resources to go through the same. For 99.9% of the population, a diagnostic like his means a really different outcome. I know he is trying to fix this with his investments and companies, but sharing this story could be seen as "boasting"... "I went through this and I survived, while your loved ones wouldn't"
Kudos to Sid for trying it and hopefully it benefits others in the long run. Not everyone has the money, will or commitment to do this. My own father died with a battle of myeloma, a blood and bone marrow cancer, after 2 years, it wasn't the disease specifically that got him, it was the secondary conditions that caused irregular heart rhythm and eventually one day it stopped and no one was there to help. 2 stem cell transplants, rounds of chemo, almost full failure of kidneys. The cancer did its job. Ultimately what I'm saying, the medicine gives us time, but no one beats death. Maybe the treatment gives us time to come to terms with that, hopefully my dad did. I was in total denial. Anyway good luck to you Sid.
All the best to all the cancer survivors out there, and to the loved ones who lost them.
When it comes to cancer, there is an awful lot of legacy thinking and "way things are done" taking lives. Starting with the so called "standard of care", which makes patient lose precious treatment windows while they wait for a possible miracle from "first-line drugs" from thirty and forty years ago which frankly are not that good. But it's hard to reform because the fraction of people who ever think about cancer as a problem to be solved is quite small; and it ought to be far larger, given that cancer is the second or even first leading cause of death across much of the world. I wish Elliot Hershberg every success.
I'm pretty much a pessimest when it comes to fighting cancer. I think it's just one of the bugs in our genetic code that evolution didn't shake out. I say that not as a biologist or anyone who has done any work in the field. But I've seen people close to me die of cancer and it seems like the treatement is almost worse than the disease. I agree that the standard first attacks are very crude and have broad systemic side effects and the attitude seems to be "you'll die without this so that doesn't matter."
I read some stuff about mRNA treatment a while ago that seemed like it might be promising.
> seems like the treatement is almost worse than the disease.
I think that's what the poster above you was saying. "Oldschool" chemo is basically poison, and the hope is that it kills off the cancer before the patient. But there are newer drugs that are extremely effective with way way way less side effects out there, depending on which type of cancer one has. Things like immunotherapy are really effective if you happen to match their targeted types of cancer, and some have basically 0 side effects, leading to a QoL improvement if they happen to work. People have gotten nobel prizes for some of these discoveries, it's really insane how far we've come in the last 30-40 years.
> I think it's just one of the bugs in our genetic code that evolution didn't shake out. I say that not as a biologist or anyone who has done any work in the field.
I'm just curious, do you know what the opinions about this stuff are from people that work in these fields, or that have dedicated their lives to it?
i'm pretty much a pessimest [sic] when it comes to fighting smallpox. i think it just exploits one of the bugs in our genetic code that evolution didn't shake out.
I found another story of using AI for a new vaccine the other day . https://x.com/paul_conyngham/status/2036940410363535823. Its interesting and motivating to see how people are using new technology to save lives regardless of their totally professional background and how informations are useful if you use it the right way. I wish him the best.
Not really. Osteosarcoma rates have remained very stable for decades. Some young people are getting diagnosed with colon/breast cancer at increasing rates, but most of that comes down to better diagnostics and imagining, catching things at earlier ages.
Love this! This is the way! And he proved it correct.
I remember one time I mentioned this in a casual conversation only to get back very low IQ responses with some fatuous arguments that the tests caused the disease or something.
There was this one guy Tomas something (can't remember the last name, a weird one), doesn't matter, what I do remember is how he was desperately trying to explain how more tests led to more diagnoses and that was ... somehow bad? Lmao.
Something I've observed, I've lived in Canada/US and Latin America, in the former you have to wait months for a CT scan, in the latter you can get it the same day you need it. If the "third-world" can do it, there's no excuse.
That's not a "but". Because he developed wealth and access, this is possible for one person when before it wasn't possible for anyone. This is how societies developed everything from refined sugar to rockets, as they passed various thresholds where individuals could afford to try things out.
And all of a sudden, I was bestowed with the greed to acquire more money than I can spend in a single lifetime. If I get cancer, I'd rather be rich and be able to do stuff like that, rather than die quietly.
According to some online sources his total wealth is under $3B. Hardly ‘unfathomable wealth’ IMO. Sure, billionaire territory but nowhere near the ultra-wealthy.
It’s entry-level billionaires club. The top 10 each hold $100B–$300B+, so the wealth distribution is extraordinarily skewed even within billionaires themselves. Musk is hundreds of times richer. Hardly obscenely rich.
Quick, without doing any kind of Googling or calculation: if I asked you to count 3B grains of rice by hand, how long would that take you? How big would that pile of rice be? How long would it take you to eat it?
A billion is already unfathomably large. If you think it isn't, you just haven't tried imagining what a billion of anything would be like.
The point is that you’re deluding yourself if you think that there is any difference in terms of relative “unfathomability” between 3 billion and 300 billion.
3 billion generates more in interest per day than 99.99% of people make in a year. That’s unfathomable volumes of wealth for even the very rich.
This comment left me speechless... There are just a bit over 3000 billionaires in the world, 900 in the USA. If $3B isn't "unfathomable wealth" I don't know what is.
It’s more like I hope more bad things happen to rich and powerful people so they start doing something against it.
As long as it happens to ordinary people most of then hardly care.
Reminds me of the GOP who was against stem cell treatments until Reagan got Alzheimer‘s
Not only Sid didn't come from any of those backgrounds, neither did the founder of Freshworks who literally started his company based on reading a hacker news comment. [0]
(slightly sarcastic) So we should give rich people diseases so they are incentivized to fund medical research?
Sid seems like a decent person. I'm glad that he's able to push cancer research forward on his own. Hopefully his work will make things better for everyone else with bone cancer. Seems like that is well under way. (and I guess I should recognize that he funded a cancer treatment company years before he knew he had cancer further reinforcing that he's not purely self-interested)
I'm a little melancholy that my aunt, who was a millionaire just not a mega-millionaire, didn't have the resources to do this before she died of cancer. She was able to pay for a high standard of care, but couldn't single-handedly fund teams of scientists to work on her case. I know she would have done so if she could, her biggest regret was not being around longer to see her grandkids grow up and she was very driven to watch over her family.
It is a little sad that the world's medical research apparatuses couldn't seem to fund this on their own. Not just the US medical system, but Europe and China also don't have better treatments until a rich guy came along. It seems that it's not for a lack of ideas, just that some of these ideas couldn't be funded. Is it that this type of bone cancer is super rare and the cost just isn't worth it? Or are we just under-funding at the level that several ideas with a likely positive ROI aren't able to get funded?
In individualistic societies, the cultural motivation isn't going to come in the name of collective action. In the era of how much state funding of state driven science in the US is being pulled, you're 100% correct that all that will be funded will be rich people looking to cure themselves. But just because it's factually correct, doesn't mean it's not an indictment of the society we've built.
mRNA research, first discovered in the 1960s, couldn't get much funding for years/decades and had to scrimp through what they had. And then it got a burst in funding and was publicly available in a year.
No we absolutely don't. The US hardly spends anything on research.
The entire yearly budget for the National Cancer Institute is $7 billion dollars. To put this in perspective, that's 3 days of funding the DoD. For cancer. That kills well over half a million Americans per year.
The takeaway is that we should invest in research rather than letting people die.
You can't compare the output of small teams driven by a fanatic with a single output metric with government funded research. NIH invests about 40 billion in research a year in the US as it is I believe.
> The US government [...] could find that amount of money every year.
Sorry, that money is already earmarked for killing Iranian school girls and funding a gestapo to terrorize immigrants and American citizens. Ain't got enough left over after we cover those essentials.
>Not just the US medical system, but Europe and China also don't have better treatments until a rich guy came along. It seems that it's not for a lack of ideas, just that some of these ideas couldn't be funded. Is it that this type of bone cancer is super rare and the cost just isn't worth it? Or are we just under-funding at the level that several ideas with a likely positive ROI aren't able to get funded?
Cancer research, and all research in general, is massively underfunded. The US spends $7 billion dollars per year on the National Cancer Institute. The EU spends about as much as well. That's $14 billion per year for all cancer, never mind bone cancer. This just isn't a lot of money. That's like 6 days of running the US DoD. For cancer.
To see Sid use his motivation and resources to solve his own problem is the core message (IMHO) of the hacker community.
It makes me look at my own problem (Peyronies) in a different light; a disease which has affected my life in ways which cannot be overstated. Yet, all the money in the world right now can't fix Peyronies - yet in reading his journey my mind has been changed about this.
His slide title: "I'll talk to anyone, I'll go anywhere, and I can be there anytime" is certainly the mindset!
Thanks for posting this - I'm inspired to take similar action for Peyronie's. Anything is possible.
Honestly I have no idea if it was effective or not, nor do I know anything about the side effects, but just in case you were unaware of that particular option I want to put it out there.
From what I can find, doing an online search along that path it might have been Xiaflex/Xiapex by Pfizer.
(Not paid by anyone in this particular business anymore, just remembered it when I read your comment).
[1]https://en.wikipedia.org/wiki/Dupuytren%27s_contracture
My mistake wasn't acting earlier, because I had no idea what was happening. But thank you again for your comment. Thank you!
Sid is right, Staying alive is our own job and definitely what he is doing will give him and his loved ones enough hope to get through this and sometimes he eventually he will get through.
I sincerely hope it works out for him.
Much of the red tape exists to help people avoid making common mistakes that aren't obvious until you've been through the process a number of times (other red tape just exists to gatekeep unnecessarily).
https://forum.openai.com/public/videos/event-replay-from-ter...
"Event Replay: From Terminal to Turnaround: How GitLab’s Co-Founder Leveraged ChatGPT in His Cancer Fight"
https://pubmed.ncbi.nlm.nih.gov/33550204/
Metabolic theory of cancer is untestable in practice as you can't control all variables over long time.
All the best to all the cancer survivors out there, and to the loved ones who lost them.
I hope him all the best.
I read some stuff about mRNA treatment a while ago that seemed like it might be promising.
I think that's what the poster above you was saying. "Oldschool" chemo is basically poison, and the hope is that it kills off the cancer before the patient. But there are newer drugs that are extremely effective with way way way less side effects out there, depending on which type of cancer one has. Things like immunotherapy are really effective if you happen to match their targeted types of cancer, and some have basically 0 side effects, leading to a QoL improvement if they happen to work. People have gotten nobel prizes for some of these discoveries, it's really insane how far we've come in the last 30-40 years.
I'm just curious, do you know what the opinions about this stuff are from people that work in these fields, or that have dedicated their lives to it?
been thinking about prenuvo all the time now but not sure if thats going to help or make me more paranoid.
Love this! This is the way! And he proved it correct.
I remember one time I mentioned this in a casual conversation only to get back very low IQ responses with some fatuous arguments that the tests caused the disease or something.
There was this one guy Tomas something (can't remember the last name, a weird one), doesn't matter, what I do remember is how he was desperately trying to explain how more tests led to more diagnoses and that was ... somehow bad? Lmao.
Something I've observed, I've lived in Canada/US and Latin America, in the former you have to wait months for a CT scan, in the latter you can get it the same day you need it. If the "third-world" can do it, there's no excuse.
The way out is obviously better tests and not less tests :-)
A billion is already unfathomably large. If you think it isn't, you just haven't tried imagining what a billion of anything would be like.
The point is that you’re deluding yourself if you think that there is any difference in terms of relative “unfathomability” between 3 billion and 300 billion.
3 billion generates more in interest per day than 99.99% of people make in a year. That’s unfathomable volumes of wealth for even the very rich.
I remember reading a similar article about a (cancer?) patient who used 3D printing for his personalized cure.
Reminds me of the GOP who was against stem cell treatments until Reagan got Alzheimer‘s
?
What's that supposed to mean? Is that bad?
You can do the same thing as he did, what's stopping you?
He did not come from any of those backgrounds.
So I only see more excuses here.
[0] https://news.ycombinator.com/item?id=28336815
You miss 100% of the shots if you do. not. try.
Right time, right place
Sid seems like a decent person. I'm glad that he's able to push cancer research forward on his own. Hopefully his work will make things better for everyone else with bone cancer. Seems like that is well under way. (and I guess I should recognize that he funded a cancer treatment company years before he knew he had cancer further reinforcing that he's not purely self-interested)
I'm a little melancholy that my aunt, who was a millionaire just not a mega-millionaire, didn't have the resources to do this before she died of cancer. She was able to pay for a high standard of care, but couldn't single-handedly fund teams of scientists to work on her case. I know she would have done so if she could, her biggest regret was not being around longer to see her grandkids grow up and she was very driven to watch over her family.
It is a little sad that the world's medical research apparatuses couldn't seem to fund this on their own. Not just the US medical system, but Europe and China also don't have better treatments until a rich guy came along. It seems that it's not for a lack of ideas, just that some of these ideas couldn't be funded. Is it that this type of bone cancer is super rare and the cost just isn't worth it? Or are we just under-funding at the level that several ideas with a likely positive ROI aren't able to get funded?
mRNA research, first discovered in the 1960s, couldn't get much funding for years/decades and had to scrimp through what they had. And then it got a burst in funding and was publicly available in a year.
The US government and European governments could find that amount of money every year.
The takeaway here is getting money into the hands of smarter and more motivated people.
The entire yearly budget for the National Cancer Institute is $7 billion dollars. To put this in perspective, that's 3 days of funding the DoD. For cancer. That kills well over half a million Americans per year.
The takeaway is that we should invest in research rather than letting people die.
Would it be a big deal to double that?
Sorry, that money is already earmarked for killing Iranian school girls and funding a gestapo to terrorize immigrants and American citizens. Ain't got enough left over after we cover those essentials.
Cancer research, and all research in general, is massively underfunded. The US spends $7 billion dollars per year on the National Cancer Institute. The EU spends about as much as well. That's $14 billion per year for all cancer, never mind bone cancer. This just isn't a lot of money. That's like 6 days of running the US DoD. For cancer.