Has anyone here participated, or know anyone who has participated in the AMG 509 immunotherapy trial? My father has been presented with an opportunity to participate and there is not much information out about it, and I'm desperately trying to find out more before guiding him in the direction of joining the trial. I wanted to see if any of you gentlemen have some more insight or personal experiences to share--I would appreciate it endlessly.
Wishing you all health and all the very best--you all truly are superheroes in my eyes!!
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user2626
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I am currently in the latest cohort AMG 509 trial where they give you gradual doses via infusions once a week until they get you to the desired strength 1.5 mg after 4 weeks. Then i will go to biweekly...start is week 1 =0.1...week 2 =0.3...week 3 =1.0 week 4 and after =1.5...then biweekly. My personal side effects have been flu like symptoms for 2 to 3 days following each infusion. Its too early to know any progress as i just finished week 3. 1st week has an over night hospital stay for observation. All other infusions are day of..bloodwork...then 2 hr infusion..then 6 hr observation...then home. Mine are weds..with follow ip appts thurs and friday( bloodwork) and ekg!
Thank you so much for sharing! Hoping for amazing results for you!! I would love to hear more about how you’re feeling and your results when you get them if you’re open to updating us. Wishing you success, health, and good luck
Cytokine release may be an indication of an immune response. I hope they're keeping track of which patients have fever/cytokine release, and which ones don't. It's possible that attempts to suppress fever may also suppress any immune response. I believe it was Hippocrates who said: "No fever, no cure".
I was enrolled in the Amgen-509 trial. Started Jan 2022. Dosage was 0.1 with no escalation. First four infusions required hospital stay for observation. Shortly after first dose, I developed flu like symptoms including fever. I was told that this was an indication that my immune system was attacking. Symptoms seem to pass quickly. PSA dropped to undetectable (from 22), quickly. Throughout the trial I got several rashes that were treated with some type of steroid cream and disappeared in a day. After nearly a year of the infusions, I developed a form of vasculitis. Pain in my jaw and head became severe. Dr’s figured it out pretty fast and treated it with big dose of prednisone. They suspected the Amgen either caused or contributed to the vasculitis so I was removed from the trial after about 14 months. It has now been well over a year since I stopped the trial. PSA is still undetectable. Only treatment I’m getting is Lupron shot every three months. Don’t know how long psa will stay low. I have bloodwork scheduled next week. I must add this: during the trial, I was treated like a king. The care was way above what I expected. Good luck!
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