AMG 509 trial

[user2626]

Hey Everyone,

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!!

[God_Loves_Me]

I am tracking AMG-509. I would do it without hesitation. There is one major side effect "cytokine release " Please understand cytokine release from dr

Here is the post

healthunlocked.com/advanced...

[swwags]

It's in phase 1 - aka - dosage exploration phase. This is the riskiest part of any clinical trial.

classic.clinicaltrials.gov/...

[Tall_Allen]

There have been a few. Try the search bar.

[Hohman]

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!

[God_Loves_Me in reply to Hohman]

How's your side effect ? Specially Cytokine release

[Hohman in reply to God_Loves_Me]

I.must say my side effects muscle pain has been a bit brutal at times. They have now administered an additional iv bag of what they call tocimab(abbrev.) Which is to combat the myalgia pain side effect immediately following the AMG509. the 1st month psa dropped from 202...down to 158...the 2nd month psa dropped to 45. The bone scan are showing areas that were 9mm down to 8mm..7mm down to 6mm. So thimgs are moving in the right direction. I occasionally get some edema type swelling and the muscle pain moves around...the Steroid dexamethasone does alleviate some pain but i do have to take pain pills when it gets too much to handle. The last PSA did spike back up to 60 which worried me but my Dr informed me he is more interested that the foci spots were shrinking and we will know more 11/6 the date of the next scan. This trial is in no way an easy ride...the body stiffness that it causes is quite difficult to deal with. You just have to start your day by pushing yourself and moving slowly...hot baths/ showers...heating pads and ointments. I did agree to continue on to the next cohort so i will be in this for a few more months. Oh there is also some swallowing throat pain that pops up here and there but again...there are many days in between that the pain is very mild sonits a bit unpredictable. You are treated very well by the trial coordinators and staff! I wish you luck and be strong!

[user2626 in reply to Hohman]

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

[Farmhand in reply to Hohman]

I just read your post as I found it through the search bar because I am considering starting AMG 509 trial myself. Can you tell me how the trial went for you so far? How severe were the side effects and what were they? Has it Reduced PSA and tumor volume for you? Thank you so much.!

[traxcavator]

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".

[j-o-h-n]

Would you please be kind enough to update your dear Dad's bio. All info is voluntary but it helps him and helps us too. Thank you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

[Tyson53]

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!

[God_Loves_Me in reply to Tyson53]

Thank you for sharing

[user2626 in reply to Tyson53]

that’s amazing! I’m so happy to hear you’re doing well!! Thank you so much for sharing, I really appreciate it. Wishing you continued good health

[jrodrig in reply to Tyson53]

Hello, I am going to begin a AMG 509 trial. In your post I read that you had a kind of vasculitis. Once you were removed of the trial, do you have vasculitis yet? And how was your last bloodwork?

[Tyson53 in reply to jrodrig]

No vasculitis anymore. The steroid treatment actually cleared the vasculitis quickly but the process of slowly getting off the prednisone has taken a while. I was told the vasculitis could return so we watch for symptoms and bloodwork results. PSA on June 12 was still undetectable. I’ve heard that trial dosage has been increased a lot since I was in it. Not sure what side effects are popping up with the higher dose. Getting a terminal cancer diagnosis was a shock for me as I’m sure it is for everyone. For me, faith is a big part of my battle against this disease. Good luck in the trial!