4 ms·

I hope too to accomplish at least two concrete ends: 1. Help and educate other people who are suddenly facing the opaque clinical-trial system: https://besssti

I hope too to accomplish at least two concrete ends: 1. Help and educate other people who are suddenly facing the opaque clinical-trial system: https://bessstillman.substack.com/p/please-be-dying-but-not-too-quickly https://bessstillman.substack.com/p/please-be-dying-but-not-... 2. Ultimately, reform and speed FDA approval for fatal diseases like recurrent / metastatic head and neck cancers: https://jakeseliger.com/2024/01/29/the-dead-and-dying-at-the-gates-of-oncology-clinical-trials https://jakeseliger.com/2024/01/29/the-dead-and-dying-at-the.... A drug like petosemtamab (MCLA-158), which I was on from Sept. 27 2023 to March 29 2024, should already be approved, instead of continuing to wander around in clinical trials.

melling 2y ago
Have you discussed anything about targeted therapies? For example, how the different genetic makeup of some tumors are used to treat them. Keytruda comes to mind. https://www.keytruda.com/ https://www.keytruda.com/ Antibody drug conjugates also seem to be discussed often: https://www.mdanderson.org/cancerwise/antibody-drug-conjugates--a-shift-in-treatment-options-for-solid-tumors.h00-159619434.html https://www.mdanderson.org/cancerwise/antibody-drug-conjugat...
- adamredwoods 2y ago
  In his blog, he discusses Keytruda. https://jakeseliger.com/2023/12/19/what-if-things-go-right-with-the-carcinoma-treatment-how-long-we-expect-to-live-affects-how-we-live/ https://jakeseliger.com/2023/12/19/what-if-things-go-right-w...
  - melling 2y ago
    I see where he discusses it. He said it only works for a small group and not for him. He’s mentions trying drugs that target EGFR mutations, which I believe tries to stop the blood supply to the tumor. Targeting specific protein receptors, like HER2 in breast cancer, seems to be promising. https://my.clevelandclinic.org/health/diseases/25213-her2-positive-breast-cancer https://my.clevelandclinic.org/health/diseases/25213-her2-po... RAS is a target for (some) colon and pancreatic cancers: https://www.cancer.gov/research/key-initiatives/ras#:~:text=More%20than%2030%20percent%20of,the%20RAS%20family%20of%20genes https://www.cancer.gov/research/key-initiatives/ras#:~:text=....
deleted 2y ago
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thenerdhead 2y ago
Are you able to bypass the FDA with the Right to Try act? https://www.fda.gov/media/133864/download#:~:text=Right%20to%20Try%20allows%20eligible,been%20approved%20by%20the%20FDA https://www.fda.gov/media/133864/download#:~:text=Right%20to.... The FDA is a joke. I mean that in the kindest way possible as someone with long covid waiting for the FDA to allow me access to previous covid therapeutics that show promise in this disease.
keeptrying 2y ago
Yes the clinical trial system is super opaque and it's not clear what benefit one can get if one doesn't understand the process or even the risk profile of it. This lack of patient agency applies to all of medicine, really. I plan to improve patient-doctor relationship in general. Gut tells me that enabling educative access to the basic sciences component of medical school and paring it down to patient specific focus, we can enable much higher patient agency through better patient-doctor communication and a deeper understanding of ones condition. More importantly a better decision making process and ability to query and understand the doctor. I've been through this with my wife and it's just so important.

melling 2y ago

Have you discussed anything about targeted therapies? For example, how the different genetic makeup of some tumors are used to treat them. Keytruda comes to mind. https://www.keytruda.com/ https://www.keytruda.com/ Antibody drug conjugates also seem to be discussed often: https://www.mdanderson.org/cancerwise/antibody-drug-conjugates--a-shift-in-treatment-options-for-solid-tumors.h00-159619434.html https://www.mdanderson.org/cancerwise/antibody-drug-conjugat...

adamredwoods 2y ago
In his blog, he discusses Keytruda. https://jakeseliger.com/2023/12/19/what-if-things-go-right-with-the-carcinoma-treatment-how-long-we-expect-to-live-affects-how-we-live/ https://jakeseliger.com/2023/12/19/what-if-things-go-right-w...
- melling 2y ago
  I see where he discusses it. He said it only works for a small group and not for him. He’s mentions trying drugs that target EGFR mutations, which I believe tries to stop the blood supply to the tumor. Targeting specific protein receptors, like HER2 in breast cancer, seems to be promising. https://my.clevelandclinic.org/health/diseases/25213-her2-positive-breast-cancer https://my.clevelandclinic.org/health/diseases/25213-her2-po... RAS is a target for (some) colon and pancreatic cancers: https://www.cancer.gov/research/key-initiatives/ras#:~:text=More%20than%2030%20percent%20of,the%20RAS%20family%20of%20genes https://www.cancer.gov/research/key-initiatives/ras#:~:text=....

deleted 2y ago

[deleted]

thenerdhead 2y ago

Are you able to bypass the FDA with the Right to Try act? https://www.fda.gov/media/133864/download#:~:text=Right%20to%20Try%20allows%20eligible,been%20approved%20by%20the%20FDA https://www.fda.gov/media/133864/download#:~:text=Right%20to.... The FDA is a joke. I mean that in the kindest way possible as someone with long covid waiting for the FDA to allow me access to previous covid therapeutics that show promise in this disease.

keeptrying 2y ago

Yes the clinical trial system is super opaque and it's not clear what benefit one can get if one doesn't understand the process or even the risk profile of it. This lack of patient agency applies to all of medicine, really. I plan to improve patient-doctor relationship in general. Gut tells me that enabling educative access to the basic sciences component of medical school and paring it down to patient specific focus, we can enable much higher patient agency through better patient-doctor communication and a deeper understanding of ones condition. More importantly a better decision making process and ability to query and understand the doctor. I've been through this with my wife and it's just so important.