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Comment by jseliger | Hacker News Reader

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-...

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.... 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.

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Are you able to bypass the FDA with the Right to Try act?

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.

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.

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/

Antibody drug conjugates also seem to be discussed often:

https://www.mdanderson.org/cancerwise/antibody-drug-conjugat...

In his blog, he discusses Keytruda. https://jakeseliger.com/2023/12/19/what-if-things-go-right-w...

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-po...

RAS is a target for (some) colon and pancreatic cancers:

https://www.cancer.gov/research/key-initiatives/ras#:~:text=....

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