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.
> 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.
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!
no question in there, just a comment, love your openness and giving back to the community, wish you full success and recovery.
And Sytse if you read this: beterschap en als dat niet helpt: sterkte. Cancer sucks.
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!
(edit: actually now that I checked the treatment timeline again it seems to be gone now. It was there 2 weeks ago!)
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.
You should consider publishing a patient case report somewhere, as I believe there are lots of valuable conclusions to be extracted from your work.
I’m praying for you both and hoping that you’ve found peace and comfort since she passed. And I hope that you are doing well. I know she would be proud of you for keeping on!
take care
like why is it people with cancer? why isn't it people with muscular diseases?
Fasting (1 to n weeks) is said to provide potential benefits for certain types of cancer treatments. Pre-cancer, it is said to potentially prevent cancer onset. This is potentially powerful for those of us with a family history with cancer.
I have been fasting for a couple of years. My longest fast was 21 days last year. I am on track for a four week fast right now.
Note that there seems to be research indicating that prolonged fasting with cancer might not be good, fasting around treatment is a different story.
https://www.youtube.com/shorts/EGUtr9w_HtE
https://www.youtube.com/watch?v=jDG1m_b5Ih0
Sunlight exposure is also said to be critical with treatment of disease. It isn't just about vitamin D.
Here's a Huberman episode with Dr. Roger Seheult on the subject:
Ideal? Maybe not.
Just trying to help someone in dire need. As someone who lost multiple family members to cancer, I would have gladly considered links to reputable expert discussions on YouTube at any time during the multiple painful journeys our family has had to endure.
Imagine some asshole criticizing someone sending me a link to a potentially valuable expert podcast on YouTube as I watched my mother die from pancreatic cancer. Yeah. Imagine that and read what you wrote.
Keep your bullshit criticism to yourself.
Fuck me! People can be such...
Sorry your lost your mom. This person in need is obv more intelligent and driven than most of us and is using resources that go way above YT videos.
It makes sense. Cells need nutrients for the cell cycle, similar to the way computers need RAM to execute programs.
Fasting not only deprives cancer cells of nutrients, but also triggers a homeostatic response in the entire body. This response includes putting its garbage collection system (autophagy) into overdrive mode so that it can reclaim the limited resources it has left to survive. Fasting is a reductive treatment, like purging oxygen from a server room on fire. It might help slow it down, but it can take healthy inhabitants along with it.
Additive treatments offer more options. If you catch the fire early and it’s contained (non-metastatic), you can target it with a fire blanket (surgery, stem cell transplantation) or a fire extinguisher (small molecules, biologics, peptides, gene therapy, etc.) to put it out. The sprinklers are a last ditch effort for larger fires (chemotherapy, radiation), which could save the building, but result in significant collateral damage.
And get a grip - you are free to bring value to the world in your way if you're not happy to be an employee. Attacking others that have done nothing to harm you is entirely uncalled for, especially on a discussion about their own cancer. Please act like an adult.
I cant understand how you could possibly think this question is not "tone deaf" unless you are genuinely autistic - not using it as an insult, genuinely curious - since such a question would be simply beyond the pale in polite society, given the context.
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?
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 sincerely hope it works out for him.
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.
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!
I followed the instructions for a few months and it fixed it. I went back and sent the biggest thanks to the responder. I did not expect to get any help from a random forum.
There has to be swathes of kids struggling with "embarrassing" (in quotes, because they actually aren't embarrassing at all) issues like this. I hope today's internet can provide help to the ones that have nobody to discuss them with.
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?
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.
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"
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
Eligibility requires history of relapse and refractory soft tissue sarcoma. Recruiting in US and Canada.
https://clinicaltrials.gov/study/NCT07156565?tab=researcher#...
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.
All the best to all the cancer survivors out there, and to the loved ones who lost them.
Countries are already trying to attract clinical trials, and that includes streamlining approvals.
I think one of the legacy thinking is to treat it like an infection rather than a systemic disease.
I read some stuff about mRNA treatment a while ago that seemed like it might be promising.
You seem to be indeed factually correct in most cases, judging by views of physicians who have gone against the orthodoxy.
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.
In practice, though, some species are way less prone to cancer than others. Orders of magnitude of a difference, even in mammals. Bats, notoriously. Or naked mole rats. On the other hand, mice get cancer fairly reliably.
Which means that there are biologically realistic way how to keep the danger at bay, and they seem to involve the immune system.
Might be that cancer hits after creating offspring.
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 hope him all the best.
"Bureaucracy" isn't blocking new and better treatments, privatized healthcare and research is.
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.
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.
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 :-)
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.
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.
Neither $3b nor $300b are realistically unfathomable to me. I find them easy to consider in terms of the projects I can build if I achieved each of these amounts.
As an example I’d have to allocate somewhere between $50m to $250m to get people to vote on a California proposition. I’d need to spend $1.5b to create a wing of a major hospital. I’d need between $100m and half a billion to create a new K-12 school in my city.
These are large sums of money and are currently out of my reach so if AI doesn’t destabilize everything my best bet is to take the same approach each of my ancestors did. Move my children one level up the wealth ladder and hopefully give them the values that help them prioritize these actions and the optimal way of getting there. I think that involves some amount of compounding and then some amount of spending.
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.
You miss 100% of the shots if you do. not. try.
Right time, right place
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.
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.
I assume you meant `max(...)`? Otherwise you will at best get zero dollars in bonus, and at worst owe your employer money. ;)
(I get min/max backward all the time too.)
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.
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.
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.
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.
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.
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.