Thanks for posting this. Happy to answer questions!
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.
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 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.
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!
Someone in my immediate family had Glioblastoma, it felt like fighting a hurricane.
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 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.