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.
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).
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.
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.
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.
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.
(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?
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.
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.
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.
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"
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.
This story and the guy curing his dogs cancer leads me to believe what's missing is a jurisdiction that allows people with money to do whatever experiments they want/need to move medicine forward.
I wish you the best, my brother-in-law (also a close friend) lost his fight against cancer in 2019, it changed my perception of life forever. What we live is a bit like how we die, I had some of the best moments with him while he was more aware than myself about how we are all going to die, he changed my perception of caring much more about the uniqueness and the present moment. One of my favorite quotes is from Buckminster Fuller, "You belong to the Universe. Your significance will remain forever obscure to you ... (see full quote on Wikipedia)". Thank you so much for all the creation you have done in this world Sid, just for Gitlab it's plenty. I am a long time & very satisfied Gitlab customer, I switched a long time ago for its superior CI/CD integration and its super inspiring handbook. Another favorite quote is actually from you ... "My reasoning was I got to tell everyone what I do, and I want it to be a really good story." Lately I fundamentally changed my perception, the most important computer of all is the planet Earth, you seem to be aligned with this vision as well, correct me if my perception is wrong. I hope you keep going on with all those beautiful stories, we are lucky to have you with us.
Sid, Thank you for funding Arden Bio. Rheumatology patients and their clinicians are often left to throwing darts from afar, in series and often with significant & permanent function loss with each dart. Moreover, proper care of refractory rare diseases is not something that insurance funds: my otherwise excellent coverage expressly denies "investigatory" treatments, for example. As a small fiber neuropathic vasculitus patient with secondary Sjögren's I really look forward to progress in this field, it cannot happen soon enough. Best of luck in your own care and profile. - Clark
Love how you approached and presented this. The data vis on https://osteosarc.com/ is outstanding; such good explorability (is this some open source framework?)
I do have concerns regarding the proposals for scaling personalized medicine. They mostly boil down to "how do you scale the skill set required to operate in high-noise-low-signal domains". In my experience, these are places where poor data/incentives/critical-thinking can easily overshadow the signal; e.g., compelling stories outnumber correct stories.
There seems to be a trade-off: you can walk a bit further than others by keeping the probability distributions for low-quality results in your head, but go too far and everything starts getting overwhelmed by noise. It seems like the FDA's heavy gatekeeping is one way to solve this problem. If you forgo that gatekeeping, then you probably need to deal with the cascading quality issues that result.
Personalized treatments will probably be much harder to evaluate. At least a black-box algorithm that maps `situation → suggested treatment` can have statistics applied to it. But how do you evaluate "individuals made their own decision; here's the list of `situation × outcome`"? Or is the idea that there's currently a wealth of good-solutions, and that we should be relaxing regulations for a while?
Or perhaps we just want to push the regulator burden from "before small trials" to "before medium trials"? Then, these will be treated as case studies: good for experts to pull ideas from, but not high quality evidence for proving anything the third parties? I notice that your diagnostics were numerous, but the treatments were sparse and more sequential than parallel. If that's the norm, then maybe fairly usable data will emerge.
Or do people just have a moral right to seek out their own treatment, regardless of footguns that may be lying in wait? For myself and my loved ones battling cancer, I deeply agree with these:
> Maximize survival instead of the current practice of minimizing liability to the practitioner
> Parallel treatments wherever reasonable, we don't need to know what cured you
But I'm also glad that daily medical decisions are highly standardized and quality-controlled. It makes it easier to trust my doctor (or my loved ones' doctors) without independently investigating each recommendation.
It was hard to tell how he is doing and whether any of these treatments are working, but I sincerely hope for a good outcome for him. He has always seen like a genuinely good person. Cancer sucks.
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[ 3.0 ms ] story [ 65.2 ms ] threadAll the best to all the cancer survivors out there, and to the loved ones who lost them.
I sincerely hope it works out for him.
I think one of the legacy thinking is to treat it like an infection rather than a systemic disease.
been thinking about prenuvo all the time now but not sure if thats going to help or make me more paranoid.
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.
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?
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.
I hope him all the best.
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.
They say to eat a healthy diet, exercise, get enough sleep, and avoid smoking/alcohol.
Have you discovered more specific reasons over the years?
Were you lacking in any of these?
I do have concerns regarding the proposals for scaling personalized medicine. They mostly boil down to "how do you scale the skill set required to operate in high-noise-low-signal domains". In my experience, these are places where poor data/incentives/critical-thinking can easily overshadow the signal; e.g., compelling stories outnumber correct stories.
There seems to be a trade-off: you can walk a bit further than others by keeping the probability distributions for low-quality results in your head, but go too far and everything starts getting overwhelmed by noise. It seems like the FDA's heavy gatekeeping is one way to solve this problem. If you forgo that gatekeeping, then you probably need to deal with the cascading quality issues that result.
Personalized treatments will probably be much harder to evaluate. At least a black-box algorithm that maps `situation → suggested treatment` can have statistics applied to it. But how do you evaluate "individuals made their own decision; here's the list of `situation × outcome`"? Or is the idea that there's currently a wealth of good-solutions, and that we should be relaxing regulations for a while?
Or perhaps we just want to push the regulator burden from "before small trials" to "before medium trials"? Then, these will be treated as case studies: good for experts to pull ideas from, but not high quality evidence for proving anything the third parties? I notice that your diagnostics were numerous, but the treatments were sparse and more sequential than parallel. If that's the norm, then maybe fairly usable data will emerge.
Or do people just have a moral right to seek out their own treatment, regardless of footguns that may be lying in wait? For myself and my loved ones battling cancer, I deeply agree with these:
> Maximize survival instead of the current practice of minimizing liability to the practitioner
> Parallel treatments wherever reasonable, we don't need to know what cured you
But I'm also glad that daily medical decisions are highly standardized and quality-controlled. It makes it easier to trust my doctor (or my loved ones' doctors) without independently investigating each recommendation.