Recovery of testosterone and side effects after stopping ORGOVYX

Posted by mikejf @mikejf, Dec 1 1:19pm

Diagnosed 2018 with Stage four Metastasized PC. Had 4 rounds of chemo then Lupron injections for about a year and then prescribed ORGOVYX. Have been only on ORGOVYX for 5-6 years. Recent PET scans (2025) show no active cancer anywhere. My oncologist recommended stopping ORGOVYX and monitoring PSA and Testosterone level every 3 months. It’s been a few weeks with no ADT. Questions: Has anyone had diarrhea as a side effect of stopping ADT and how long before Tetosterone returns along with muscle gain etc. etc. thank you

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Trimix was part of my recovery process following the RP. And you are spot on — it was effective until the cancer returned and my RT/hormone therapy began. I may give it another try. But as I’ve indicated in a previous post, eliminating my stress urinary incontinence is my Number 1 priority. Thanks again for your valuable input.

REPLY
Profile picture for tommylee3 @tommylee3

Trimix was part of my recovery process following the RP. And you are spot on — it was effective until the cancer returned and my RT/hormone therapy began. I may give it another try. But as I’ve indicated in a previous post, eliminating my stress urinary incontinence is my Number 1 priority. Thanks again for your valuable input.

Jump to this post

@tommylee3
You need to find a pelvic floor physical therapist. They can work with you to get your stress incontinence resolved. Usually it involves doing kegels, and they train you how to do them properly. It can take a few months before it’s really effective.

REPLY
Profile picture for jeff Marchi @jeffmarc

@tommylee3
You need to find a pelvic floor physical therapist. They can work with you to get your stress incontinence resolved. Usually it involves doing kegels, and they train you how to do them properly. It can take a few months before it’s really effective.

Jump to this post

@jeffmarc — you are a good man. Thank you!

The PT pelvic floor specialist was the first thing I did BEFORE and immediately after surgery. I was doing Kegels 24/7, and all sorts of pelvic floor exercises. Even tried dry needling. But after a year of bi-weekly appointments, i decided on the ProACT procedure in January 2025.

I’m getting tired of the clamp and Depend liners. Now checking on surgeons with Boston Scientific AUS expertise — AMS 800.

Thanks again.

REPLY

2 months after stopping Orgovyx my T was 210. I'm a low T guy with a pre ADT of 250. I no longer lift but do hard mountain biking and all systems were clicking 2-3 months after finishing. First 3 months Lupron, went anemic, 2nd 3 months Orgovyx and anemia recovered to normal with a slight LDL rise.

REPLY
Profile picture for tommylee3 @tommylee3

@jeffmarc — you are a good man. Thank you!

The PT pelvic floor specialist was the first thing I did BEFORE and immediately after surgery. I was doing Kegels 24/7, and all sorts of pelvic floor exercises. Even tried dry needling. But after a year of bi-weekly appointments, i decided on the ProACT procedure in January 2025.

I’m getting tired of the clamp and Depend liners. Now checking on surgeons with Boston Scientific AUS expertise — AMS 800.

Thanks again.

Jump to this post

@tommylee3
I am probably getting the same thing in February. Already saw the urologist that does it and it’s just a matter of time until I can get in there for surgery.

REPLY
Profile picture for tommylee3 @tommylee3

@jeffmarc — you are a good man. Thank you!

The PT pelvic floor specialist was the first thing I did BEFORE and immediately after surgery. I was doing Kegels 24/7, and all sorts of pelvic floor exercises. Even tried dry needling. But after a year of bi-weekly appointments, i decided on the ProACT procedure in January 2025.

I’m getting tired of the clamp and Depend liners. Now checking on surgeons with Boston Scientific AUS expertise — AMS 800.

Thanks again.

Jump to this post

@tommylee3 I had the AMS 800 implanted 11 months ago. I highly recommend. A TOTAL life changer!

REPLY
Profile picture for jimgaudette @jimgaudette

@tommylee3 I had the AMS 800 implanted 11 months ago. I highly recommend. A TOTAL life changer!

Jump to this post

@jimgaudette That is great news!! I’m having a phone conversation with a Boston Scientific Patient Coordinator this morning to continue my research. Your recommendation is quite timely. Thank you!

REPLY
Profile picture for chippydoo @chippydoo

2 months after stopping Orgovyx my T was 210. I'm a low T guy with a pre ADT of 250. I no longer lift but do hard mountain biking and all systems were clicking 2-3 months after finishing. First 3 months Lupron, went anemic, 2nd 3 months Orgovyx and anemia recovered to normal with a slight LDL rise.

Jump to this post

@chippydoo

4 months after Lupron and radiation treatments were completed my testosterone was still < 9 and my side effects were still awful with a PSA < 0.1. I am 83 but very active exerciser.

REPLY
Profile picture for pesquallie @pesquallie

@chippydoo

4 months after Lupron and radiation treatments were completed my testosterone was still < 9 and my side effects were still awful with a PSA < 0.1. I am 83 but very active exerciser.

Jump to this post

@pesquallie Lupron is the gift that keeps on giving. I did Lupron for 3 months and went anemic which is tough for someone that is active. I switched to Orgoyx for the second 3 months and felt a lot better and anemia corrected itself. 2 months post treatment psa was undetectable and my T was 210. It is my understanding that Orgovyx has a half life of 25 hours and for us "short termers", Lupron hangs on roughly the amount of time we treated with it. My results were consistent with that.

REPLY
Profile picture for chippydoo @chippydoo

@pesquallie Lupron is the gift that keeps on giving. I did Lupron for 3 months and went anemic which is tough for someone that is active. I switched to Orgoyx for the second 3 months and felt a lot better and anemia corrected itself. 2 months post treatment psa was undetectable and my T was 210. It is my understanding that Orgovyx has a half life of 25 hours and for us "short termers", Lupron hangs on roughly the amount of time we treated with it. My results were consistent with that.

Jump to this post

@chippydoo
Lupron does not hang around as long as you’ve been on it. The half life of Lupron is 3 to 4 hours. You can get a one month three month four month or six month shot. It will be active as long as the shot is listed for. It doesn’t hang around much longer once the time on the shot runs out it doesn’t stay in the system much longer.

As an example, when I was getting the six month shot, I got my shot three weeks late one time and my PSA went from undetectable to .6 in three weeks. I just happen to get a PSA test right before getting the shot. It went back down to undetectable the next month.

It does take longer for testosterone to come back if you’ve been on Lupron compared to Orgovyx.

I was on Lupron for six years and Orgovyx for nine months. I stopped taking Orgovyx, since my oncologist and I were both sure my testosterone would not come back. In seven months, my testosterone hit 50 and was going up 25% a month. I had to go back on Orgovyx.

REPLY
Please sign in or register to post a reply.