Listening to you stitch all the technology and innovation together, moving from the information world to the physical world, as a patient, almost brought me to tears.
You said this will be the standard of care in 30-years, but the capability is here today. Listening to your recording is a profound moment in my life.
Thank you for sharing your journey.
But actually, I'm writing to tell you that many of the OTHER things you have done have had a huge positive impact. Gitlab foundation, for example, has been extraordinarily impactful on our organization and many others.
This is the way!
Ps. I work for BillionToOne oncology and we build some of the most sensitive liquid biopsy tests (https://www.northstaronc.com/). Feel free to reach out if it pique your interest!
no question in there, just a comment, love your openness and giving back to the community, wish you full success and recovery.
> You do not have the right to eliminate yourself, you do not belong to you. You belong to the universe. The significance of you will forever remain obscure to you, but you may assume that you are fulfilling your significance if you apply yourself to converting all your experience to highest advantage of others. You and all men are here for the sake of other men.
And Sytse if you read this: beterschap en als dat niet helpt: sterkte. Cancer sucks.
(edit: actually now that I checked the treatment timeline again it seems to be gone now. It was there 2 weeks ago!)
like why is it people with cancer? why isn't it people with muscular diseases?
Given that you carry the HLA-B*27:05 allele, you might have been blessed by being predisposed to a better response. But probably you want to keep an eye on future autoimmunity issues. Talking from experience...
Thanks for the compliment about the elaborate design. I think that when you make something for one or a few patients it is easier to be more elaborate, even with the same knowledge and equipment.
Maybe the TCR and BCR-seq was most helpful for mRNA design and effectiveness monitoring, but hopefully someone else on my team will answer that better.
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.
take care
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 sincerely hope it works out for him.
Cancer cells in the brain are in a nutrition rich environment for growth and at the same time dangerous for treatment for removal and to prevent growth. The expected 5 year life expectancy is less than 5%.
Dr. Richard Scolyer had been diagnosed at 2023 and is still with us today. I hope he succeeds in his work.
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.
Again, you're completely right. Talking about the disease is the first step.
Thankfully there’s a straightforward surgical treatment for it, and I hope that you’re successful on your quest around Peyronie’s!
You may know all of this already, and it may not be relevant to your situation at all, but in the slim hope that my experience of editing scores of Peyronies surgery videos may help nudge you in a new or helpful direction: there you have it!
Hacking is about exploration beyond the known, and iterating towards a clear understanding.
p.s. "I'll talk to anyone, I'll go anywhere, and I can be there anytime" - for me, unfortunately $ is the problem for going anywhere, anytime. Perhaps you can help? I've sent you an email - I'm motivated. ;-)
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).
My mistake wasn't acting earlier, because I had no idea what was happening. But thank you again for your comment. Thank you!
What about this exactly is inspiring?
Whole genome sequencing and single cell sequencing are actually surprisingly inexpensive (compared to the cost of almost any cancer treatment) and there is a good argument that we should do this by default for any type of cancer for which there are not effective treatments.
I would encourage all patients to learn as much as possible about their own diagnosis. There may be clinical trials available in another centre that your clinician is not aware of or tumour-agnostic trials that target specific mutations that are present in a range of different cancers.
There is a good argument for allowing patients to try experimental treatments once standard treatments are exhausted. The provider liability issues could easily be solved by legislation. A bigger issue is that there will always be people who want to exploit vulnerable cancer patients by charging exorbitant amounts for plausible-sounding treatments which have no evidence base.
As an individual trying multiple experimental treatments at once is the logical approach if there is no other option. However it will not be possible to know which of these is effective and which have caused side effects so to develop more effective treatments we do need structured and carefully controlled clinical trials. Unfortunately there is a huge regulatory burden for any kind of clinical trial at present and this should be massively streamlined for cancer patients where even if the treatments cause harm the alternative is death.
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).
IIRC there is a cancer lab in Vienna, Austria, where they feed genome sequence of a tumor into an AI and it sometimes recommends unexpected-but-efficient treatments.
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"
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.
Good on you, Mr. GitLab!
This story is of someone with resources putting them to good use to save themselves, but also have that benefit others: medical research is expensive and for good reason restricted, and just like lots of open source was driven by individual's need, so lots of good stuff can come out of this. I suggest to see it that way.
But this extra text you want can be obtained from LLM so if you require this “decoration” on top of information why not simply write yourself Chrome extension that reads page and adds that text to it at the bottom?
This will help you not feel bad.
* Started 10 companies to enable access to others * Detailed policy proposals to make this easier process for others * Open sourced the entire process and all of the associated data (25TB)
and probably other things I missed.
But nah, what would reaaally help is an acknowledgement.
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.
It makes sense after you understand, but I had to read the headline several times before it parsed.
Eligibility requires history of relapse and refractory soft tissue sarcoma. Recruiting in US and Canada.
https://clinicaltrials.gov/study/NCT07156565?tab=researcher#...
All the best to all the cancer survivors out there, and to the loved ones who lost them.
Did cancer got scared of the massive google doc? Just share how if you have found a treatment and if you truly care about people and the world. Just Share
Countries are already trying to attract clinical trials, and that includes streamlining approvals.
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?
Check out this paper from the Lander lab: https://elifesciences.org/articles/61026
It’s a bit jargon heavy but it’s a nice case study in how tumor growth is controlled through all the same mechanisms that normal tissue growth uses. Even cells with an outright cancerous gene mutation are basically still just doing normal growth and development.
Might be that cancer hits after creating offspring.
You seem to be indeed factually correct in most cases, judging by views of physicians who have gone against the orthodoxy.
Mortality is a feature when it comes to species level fitness. Sucks for the individual though.
I get the pessimism because "curing cancer" can essentially be interpreted as "curing aging" but progress is being made.
I think one of the legacy thinking is to treat it like an infection rather than a systemic disease.
"Bureaucracy" isn't blocking new and better treatments, privatized healthcare and research is.
I hope him all the best.
If I had cancer the last think I’d be thinking would be to make a slide deck about it.
Can these robot people come back down to earth and have a genuine human experience for a chance? Not everything has to be framed in the view of a startup company or a data analysis exercise.
Maybe focus on spending time with your family and friends? If they still like you after years of being an insufferable tech bro.
Do not go gentle into that good night
Rage, rage against the dying of the light
And if he’s successful, which hopefully now he has a much better chance of, there are all these new medical results out that are useful.
As an example, a close friend is using one of the personalized medicine companies that sytse’s “CEO of care” has invested in to diagnose a persistent debilitating condition with no specific cause.
Or to quote someone else: All progress depends on the unreasonable man.
been thinking about prenuvo all the time now but not sure if thats going to help or make me more paranoid.
But a friend of mine went through a different diagnostic procedure and found things of equal clinical significance and went through a large number of interventions which he didn’t really need it now turns out. And then I understood why people provide this warning.
So the first question to ask yourself is which kind of person you are.
Are you aware that SARS-CoV-2 is oncogenic, and that repeat exposure increases risk?
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 sad truth is, that in most countries, health systems do not allocate sufficient resources or financial support to doctors to correctly diagnose medical conditions accurately as it is not in their economic, interest to do so.
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?
I wish him all the best and good luck. Maybe in 50, 100 years we'll have more definitive cures for cancer. Till then it's mostly slash, burn and poison, unfortunately.
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?
The US government and European governments could find that amount of money every year.
Alzheimer's is a warning tale. Lots of money flowed into research of this condition, and was mostly wasted on a flawed hypothesis supported by scientific VIPs who had a face to lose in case it proved incorrect.
We don't necessarily need more money in research, but smarter ways of spending it. The current grant system rewards established players and reliable production of mediocre (or even fraudulent) papers over honest failure and actual innovation too much.
The takeaway here is getting money into the hands of smarter and more motivated people.
Governments have a limited (although large) budget, and no incentive to spend it well[1]. You don't get promoted as a government administrator if you approve a Nobel-prize-winning grannt.
If you don't get rewarded for good work but may get punished for taking risks, you optimize for risk minimization, even if this means a lot of potentially-good work not getting done.
Nobody blames the FDA when millions of people die from the-medicine-hasn't-been-invented-yet-itis, everybody blames the FDA when ten or so people die from a side effect nobody saw. This impacts FDA policy.
This person has the best incentive there is in the world, the incentive to live. He didn't care whether the people getting his money correctly filled form 437-F, or whether they have the relevant paperwork that verifies their legitimacy in a way which can be described by legal rules.
[1] Incidentally, finance has (had?) the opposite problem. If your bonus is calculated as min(0, percentage * profit_generated), you will maximize risk, optimizing for bets that give you great returns most of the time, but wipe you out completely some of the time, as your losses are clamped to 0.
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.
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.
Would it be a big deal to double that?
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.
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.
Incidentally, that's the first point on his proposals to make the industry more healthcare first (slide 15)
He also links this https://www.writingruxandrabio.com/p/the-bureaucracy-blockin...
I’m of the opinion most types of cancer can be targeted and cured. There’s just not enough money in it to produce the cure. The entire industry is locked behind a paywall.
