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Orgovyx Ineffective

Alfie- profile image
12 Replies

Got my ‘invitation’ to the club in August when my PSA was ridiculously elevated. More to follow on my story later. I’ve been taking Orgovyx since the beginning of October- my testosterone is down in the 30’s however my PSA has not gone down from the August baseline. My Oncologist is now considering Lupron/Zytiga. Is there a better combo of 1st and 2nd generation hormone therapy?

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Alfie- profile image
Alfie-
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12 Replies
jazj profile image
jazj

All those three drugs work by reducing the production of testosterone. Why would your Oncologist think if one drug that lowers your T to castration levels doesn't work, that a different drug that basically does the same thing work?

If the drug was failing to lower your T to castration levels that would be a different story.

I would think in this case most Oncologists would add Xtandi, Nubeqa or Erleada in addition to Orgovyx. They don't work by reducing testosterone but block receptors. But maybe others have found Zytiga works when Orgovyx doesn't and can chime in.

Alfie- profile image
Alfie- in reply tojazj

Thanks jazz, point taken. I’d focused on the persistently high PSA. Orgovyx is doing what it’s supposed to do - lower testosterone. Rephrasing my question, does anyone have experience with taking Orgovyx and a 2nd Gen HT?

Lettuce231 profile image
Lettuce231

Hi Alfie,

When I was diagnosed my PSA reached over 150 at one point. I have had various treatments, the one constant has been Lupron. Before being switched to Zytiga and prednisone along with Lupron my PSA was very stubborn.

I have been on Zytiga for 6 years now, along with the other drugs mentioned, the results for me have been good.

You have nothing to lose from trying.

I wish you well.

GP24 profile image
GP24

For a 2nd Gen HT you have the choice between Abiraterone, Enzalutamide, Apalutamide or Darolutamide. There has been no head-to-head comparison so all drugs are considered very similar regarding efficacy against cancer. Apalutamide seems to be very effective, Darolutamide has fewer side effects.

hfl20 profile image
hfl20 in reply toGP24

Here is an interesting comparison between the 2nd gen drugs...

medrxiv.org/content/10.1101...

casperrose profile image
casperrose

i started orgovix in october 2023 and nubeqa 1 month later my testosterone went from 600 down to 10 by january and my psa went from 1200 to 8 by march 2024. my pmsa scan showed 8 mets mostly on my femure bones and hips. i did 6 rounds of docetaxel chemotherapy next my pmsa scan is now clean and my psa is .05.

vintage42 profile image
vintage42

"... taking Orgovyx since the beginning of October... PSA has not gone down from the August baseline. My Oncologist is now considering Lupron/Zytiga. Is there a better combo of 1st and 2nd generation hormone therapy?"

I think they all work about the same, the difference is in which side effects you prefer.

I started Orgovyx last December, and by February it had reduced PSA from 3.78 to 0.11 with no side effects. I added Abiraterone last March, and by May the doublet had further reduced the PSA to 0.03 with minimal side effects. Now the PSA has dropped to 0.01.

I had wanted to avoid the 'lutamides because of side effects, except for Darolutamide (Nubeqa), which I was unable to get in doublet.

Amadeus71 profile image
Amadeus71

Diagnosed late 2021, PSA 186. Started first week of January 2022 with bicalutamide (daily, only 30 days), zytiga (1000mg daily), prednisone (10mg daily), and lupron (monthly). PSA immediately plummeted. Switched from lupron to orgovyx in May 2022 upon 2nd opinion recommendation to reduce side effects. Have been undetectable since about June 2022. Started first vacation August 2024. Blood work in October 2024 shows PSA still undetectable and increasing testosterone.

Clippedwingz profile image
Clippedwingz

You can read my bio for specifics, but I was started on simultaneous Orgovyx and Xtandi after diagnosis in April. PSA was only around 2 at baseline, but this combination dropped both testosterone and PSA to undetectable levels in 2 months and shrunk or eliminated all of my Mets.

Side effects have been manageable and expected (brain fog, mild fatigue, joint pain, and mild to moderate hot flashes).

My fatigue on Xtandi has been very mild compared to what some experience. Everyone’s body will respond differently.

chefjlu profile image
chefjlu

When I was placed on ADT prior to Salvage Radiation I opted for Orgovyx with Abiraterone. After 5 weeks on Orgovyx my T level did not level down enough and my doctor pulled me off of it. I then had a Firmagon shot, which lowered it within a few days and the shot lasted for 1 month. I then went on Lupron (6 month shots) along with the Abiraterone. ---- Everyone's system is different and some drugs are more effective than others depending. My Radiologist had seen some men who also experienced what I did. ---- Your level of "30s" is below the level considered castration - <50ng/dl. However, studies show that men who have an Orchiectomy achieve levels of about <15ng/dl and that men who reach <20ng/dl have an improved survivability. So you may want to have a discussion with your doctor (or team) in what they are looking for exactly. In my case my team was looking for <15ng/dl, so Orgovyx was cut and I was moved to Lupron ultimately with the initial of Firmagon because it does not cause a temporary bump in PSA.

j-o-h-n profile image
j-o-h-n

Greetings Alfie-

Please (more to follow as you stated) update your bio. All info is voluntary but it helps us and helps you. Thank you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

Tall_Allen profile image
Tall_Allen

Consider triplet therapy:

prostatecancer.news/2021/05...

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