I have worked as an architect in HCLS technology for 10 years with Google and AWS.

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.

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

Your cancel journey is incredibly inspirational and I will share it on.

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!

Such an inspiring read. As a bioinformatics researcher I'm awed by the depth of the deck. How do feel about the process of learning cancer biology and bioinformatics?

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!

how do you handle GitLab + Kilo + all this personal work? what system have you figured out? sorry if you've written about this somewhere, i think there's a meta lesson you have that we all can use.

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.

How do you deal with setbacks both in work and life, and show resilience and belief you can find a solution? Is this innate or something you worked on? Also, are there things you think are impossible for you to do?

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.

Sorry if this is too specific/personal, but I've been wondering, why does the treatment timeline include antibiotics (dalbavancin)? Does dalbavancin have any suspected antitumor effects, or was it simply to treat complications of surgery / catheter infections?

(edit: actually now that I checked the treatment timeline again it seems to be gone now. It was there 2 weeks ago!)

in light of everything you've learned about the pharmaceutical industry and biotech venture, is there anything in particular about oncology that makes it well suited to venture?

like why is it people with cancer? why isn't it people with muscular diseases?

Thank you for sharing—very inspiring. I'm interested in the operations of starting and managing these companies in parallel. How did you go about finding people to run the companies? How much involvement do you have in their day-to-day operations? Are they "your" companies, or do you consider yourself just Customer #1?

This is very impressive, top labs doing research often don't have experimental designs that are this elaborate. Was the TCR and BCR-seq you conducted helpful to design cell therapies, neoantigen vaccines, and monitor progress?

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...

My pleasure! How does someone support someone going through cancer? I would especially like to know how to best support someone upon initial diagnosis. It seems like you have an amazing support system and I would like to be that for someone.

How are you now?

Can't wait for the movie about this to come out.

Thanks for the inspiration! Is there anything new you've learned about fibrosis in your journey?

I've met you at SHA 2017 in NL and I wish you all the Best!

Have you run into other people doing the same ? it could be a nice new movement.

take care

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Have you just "ordered the cancer vaccine" or this is not yet that easy?

Have you ever found out the cause of the cancer?

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?

Why does Gitlab pay employees less based on their location, but doesn't adjust price based on location?

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.

Also helps we were all batchmates in W15, so the serendipity is even higher.

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Unfortunately, I found this from 12 days ago https://www.dailymail.co.uk/news/article-15655909/Dr-Richard.... Glioblastoma is a horrible disease.

I found his story to give my mom hope when her cancer had metastasized to her brain in 2025.

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.

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.

I am watching DTF St. Louis (which is not a terrible reality show about a third tier city like the title implies, actually a Jason Bateman kind of dark comedy/whodunit), and Peyronie's features in the story. The show also has the first commercials I've ever seen for a Peyronie's treatment, and apparently it's an official ad partner of the show. I wonder if some enterprising show exec decided to go pitch the perfect sponsorship or if the company making a treatment commissioned a show...

Given your personal experience, I expect you know significantly more than I do, but I just wanted to note: about 20 years ago, I was part of a small company that filmed and edited educational, medical videos for various clients. One of the main things we filmed for a while were Peyronies repair surgeries. They were using a product called Surgisis from Cook Medical as a tissue scaffold to straighten things out. It looks like, sometime in the past 20 years, Cook may have moved on to a new product called Biodesign: https://www.cookmedical.com/surgery/the-path-from-surgisis-t..., but I don't know anything about that.

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!

> To see Sid use his motivation and resources to solve his own problem is the core message (IMHO) of the hacker community.

Hacking is about exploration beyond the known, and iterating towards a clear understanding.

Thanks for you kinds words, glad to hear you recovered from Peyronies.

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).

[1]https://en.wikipedia.org/wiki/Dupuytren%27s_contracture

Fellow Australian with Peyronie's here. Do you know about Dr C Love? I have just had a PIG surgery with him. It is too early to make a definite statement on the result yet, but things are looking a lot better than before.

Someone who is conincidentally both rich and has cancer tries to find a cure for his cancer by… spending money and being desperate enough about it to be available 24/7.

What about this exactly is inspiring?

"Anything is possible," is the correct mindset when it comes to chronic or incurable diseases.

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.

Here is a video if you want more detail.

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"

I guess experiments will get a doctor sued.

While that is just a natural reaction to "unfair" world where not everyone gets the same level of access to the best level of care, I'd also say that it's a reminder that money can't and won't solve all problems people are hit with in their lifetimes (or he'd not be facing cancer diagnosis in the first place).

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.

The novel part of his post is the summary of what worked. That information you cannot get except from him. You need his experience.

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.

I agree. It would've been so easy to address that too. Just acknowledge it and be vocal about supporting policies that make it better for others.

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.

He invested in one company that fights cancer. That company later helped him fight his cancer. Afterwards, he founded new companies that fight cancer. The headline refers to the new companies (but most of the comments here are about his cancer battle).

It makes sense after you understand, but I had to read the headline several times before it parsed.

Do you really expect people to let you possibly kill people with medical experiments without even having to file some paperwork?

Countries are already trying to attract clinical trials, and that includes streamlining approvals.

I have met people who credibly are able to do some of this at Prospero. The downside to this siting is that the local government are not super reliable but it’s possible.

Paolo Cortazar, is that you?

Sorry but that’s an insane statement

Jesus fucking Christ we are so fucked.

Thank you! I've been cancer free for 10 months now. If you're curious please see https://osteosarc.com/timeline/ > MRD > Personalis.

I'm pretty sure you already are. He's just rich.

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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.

> there is an awful lot of legacy thinking and "way things are done" taking lives.

I think one of the legacy thinking is to treat it like an infection rather than a systemic disease.

He’s been public that he’s ten months clear now. Some prefer to accept undesirable circumstances. Others prefer to oppose them. He’s one of the latter. A little paraphrase of Dylan Thomas’ work here is something I’m fond of:

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.

If you can cure a cancer by framing it as a data analysis exercise that doesn't seem to be a bad thing.

Who hurt you?

Before I got my Prenuvo MRI everything online said “don’t do this, man. You’ll find all sorts of things that will worry you that you wouldn’t be worried about if you didn’t do it”. That makes no sense to me. Totally irrational. So I did the scan and saw a bunch of things which had no clinical significance - including the amusing thing that I’m missing the transverse processes on a couple of vertebrae (easily explainable from a motorcycle accident that put me in the ICU). So I moved on, scan done, and with the docs in my family reviewing.

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.

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.

Could Tomas something have been referring to some of the risks mentioned here [1]? Particularly the overdiagnosis bullet.

[1] https://en.wikipedia.org/wiki/Cancer_screening#Risks

I am fully on your side, but tests are not 100%: False positives and false negatives.

The way out is obviously better tests and not less tests :-)

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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.

This is an excellent use of his wealth and skills. Much better than Steve Jobs' response.

I remember reading a similar article about a (cancer?) patient who used 3D printing for his personalized cure.

There are grad students babying organoids right now. Saturday morning. If you can work a pipette you can do this.

According to some online sources his total wealth is under $3B. Hardly ‘unfathomable wealth’ IMO. Sure, billionaire territory but nowhere near the ultra-wealthy.

Feeling inspired?

> ...but none of this would have been possible without his unfathomable wealth and access.

?

What's that supposed to mean? Is that bad?

You can do the same thing as he did, what's stopping you?

Why can’t we just ask our governments to spend more on research? Want some rich person to donate $100 billion on cancer research?

The US government and European governments could find that amount of money every year.

>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.

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.

The bottleneck isn't research funding, it's getting past the FDA

There are so many diseases that can be solved if money isn’t an issue. The problem is even if this wealthy guy cures his own cancer the treatment will never be available to us. We still do not have cheap genetic targeting and immunotherapy. The average person will be bankrupt just from the discovery.

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.