11 ms·

@jseliger, I’ve been following your journey via your comments here on HN and the occasional post. I am glad you are posting and I think for those of us who have

by voisin 2y ago

@jseliger, I’ve been following your journey via your comments here on HN and the occasional post. I am glad you are posting and I think for those of us who haven’t been close to someone with a serious diagnosis and treatment like yours, it has humanized Cancer in a really helpful way. Thank you for posting and giving this insight and wishing you all the best as you continue along this path.

jseliger 2y ago
You're welcome! I've been "reading the Internet" since the late '90s with sites like /., and, when I got diagnosed with the death sentence sentence—recurrent and metastatic head and neck cancer—I began looking into clinical trials, and I realized that I'd never read any good descriptions of what clinical trials are like from the patient's perspective. So my wife and I decided that the thing that we needed to exist in the world didn't exist, and thus we made it. When my wife and I started writing in earnest about the clinical-trial process in particular ("Please be dying, but not too quickly" is the most comprehensive: https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly https://bessstillman.substack.com/p/please-be-dying-but-not-...), I kept expecting someone to leave a comment or send an email saying: "Hey buddy, this has already been done, check it out here: _______." But that comment or email never came. Probably someone else's comprehensive essay and guide exists somewhere, given how big the Internet is, but I've never seen it. Without having had this kind of experience, I think it's difficult to understand just how difficult and not-user-friendly the clinical-trial process is. If we can help move the needle on that, we might dramatically reduce the number of people who are in a position like mine. Personalized cancer vaccines are so close: https://jakeseliger.com/2024/04/12/moderna-mrna-4157-v90-news-for-head-and-neck-cancer-patients-like-me https://jakeseliger.com/2024/04/12/moderna-mrna-4157-v90-new..., and I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. I hope no one who has read our work has to go through a version of what I've been through, or has friends or family who must, but, statistically, given that a couple hundred thousand people have seen it, someone will. And it is better to be equipped with some sense of what to do and how to do it, than to have to try to figure it from scratch. I've wound up emailing guidance to a lot of people about head and neck cancers, and clinical trials.
- delichon 2y ago
  I went through terminal cancer with both parents. It's infuriating that with that diagnosis the medical cabinet is open with respect to palliative care, in quantities that make an exit simple. But at the same time they feel the need to protect you from possible treatments. Potential accelerated death? Approved. Potential prolonged life? We'll need more evidence.
  - baggy_trough 2y ago
    It's especially infuriating that federal restrictions on medical treatment are unlawful to start with (there's no constitutional basis for them).
    - Brybry 2y ago
      I think the Commerce Clause is a pretty sound basis for most FDA regulation. It just gets weird with the overbroad supreme court decisions that are like: "well, stuff that only happens in a single state but that might be used for interstate commerce or somehow impact interstate commerce indirectly" is also covered. [1][2] [1] https://en.wikipedia.org/wiki/Gonzales_v._Raich https://en.wikipedia.org/wiki/Gonzales_v._Raich [2] https://en.wikipedia.org/wiki/Wickard_v._Filburn https://en.wikipedia.org/wiki/Wickard_v._Filburn
      - baggy_trough 2y ago
        One can only get from regulating interstate commerce to telling a terminal patient what medicine he may consume by a tortured logical process driven by motivated reasoning.
- BurningFrog 2y ago
  > I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. Both very in character for what FDA does.
  - 2y ago

by voisin 2y ago

jseliger 2y ago

You're welcome! I've been "reading the Internet" since the late '90s with sites like /., and, when I got diagnosed with the death sentence sentence—recurrent and metastatic head and neck cancer—I began looking into clinical trials, and I realized that I'd never read any good descriptions of what clinical trials are like from the patient's perspective. So my wife and I decided that the thing that we needed to exist in the world didn't exist, and thus we made it. When my wife and I started writing in earnest about the clinical-trial process in particular ("Please be dying, but not too quickly" is the most comprehensive: https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly https://bessstillman.substack.com/p/please-be-dying-but-not-...), I kept expecting someone to leave a comment or send an email saying: "Hey buddy, this has already been done, check it out here: _______." But that comment or email never came. Probably someone else's comprehensive essay and guide exists somewhere, given how big the Internet is, but I've never seen it. Without having had this kind of experience, I think it's difficult to understand just how difficult and not-user-friendly the clinical-trial process is. If we can help move the needle on that, we might dramatically reduce the number of people who are in a position like mine. Personalized cancer vaccines are so close: https://jakeseliger.com/2024/04/12/moderna-mrna-4157-v90-news-for-head-and-neck-cancer-patients-like-me https://jakeseliger.com/2024/04/12/moderna-mrna-4157-v90-new..., and I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. I hope no one who has read our work has to go through a version of what I've been through, or has friends or family who must, but, statistically, given that a couple hundred thousand people have seen it, someone will. And it is better to be equipped with some sense of what to do and how to do it, than to have to try to figure it from scratch. I've wound up emailing guidance to a lot of people about head and neck cancers, and clinical trials.

delichon 2y ago
I went through terminal cancer with both parents. It's infuriating that with that diagnosis the medical cabinet is open with respect to palliative care, in quantities that make an exit simple. But at the same time they feel the need to protect you from possible treatments. Potential accelerated death? Approved. Potential prolonged life? We'll need more evidence.
- baggy_trough 2y ago
  It's especially infuriating that federal restrictions on medical treatment are unlawful to start with (there's no constitutional basis for them).
  - Brybry 2y ago
    I think the Commerce Clause is a pretty sound basis for most FDA regulation. It just gets weird with the overbroad supreme court decisions that are like: "well, stuff that only happens in a single state but that might be used for interstate commerce or somehow impact interstate commerce indirectly" is also covered. [1][2] [1] https://en.wikipedia.org/wiki/Gonzales_v._Raich https://en.wikipedia.org/wiki/Gonzales_v._Raich [2] https://en.wikipedia.org/wiki/Wickard_v._Filburn https://en.wikipedia.org/wiki/Wickard_v._Filburn
    - baggy_trough 2y ago
      One can only get from regulating interstate commerce to telling a terminal patient what medicine he may consume by a tortured logical process driven by motivated reasoning.
BurningFrog 2y ago
> I don't understand why the FDA hasn't approved Moderna's mRNA-4157 yet, apart from bureaucratic inertia and indifference to human suffering. Both very in character for what FDA does.
- 2y ago