How quickly do you recover 'yourself’ after stopping Orgovyx?

Posted by robertov @robertov, Feb 27 1:19pm

Started Orgovyx Jan ‘25. Have SBRT Proton mid-September ‘25. Everything going reasonably well. I am planning a trip to France May 25. Was thinking of stopping Orgovyx around the time of my trip to regain some strength, reduce fatique. How quickly after stopping do you begin to recover. Trying to plan.
Docs want me to continue for 18 months. Other info:
Gleason 4+4. Confined to prostate. PSMA negative. PSA undetectable.

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

Here is an answer, it may not be what you’re looking for

In the HERO study, relugolix demonstrated sustained testosterone suppression superior to that of leuprolide acetate (97% vs 89%; difference 7.9% [95% confidence interval, 4.1–12%; p < 0.001]).

Men (N = 934) were randomized (2:1) to receive relugolix 120 mg orally daily or leuprolide acetate injections every 12 wk for 48 wk.

Overall, 74 of the 137 men in the relugolix cohort recovered to testosterone >280 ng/dl, with a median time to recovery of 86.0 d (95% CI, 65.0–92.0), versus two of the 47 men in the leuprolide cohort, with a median time to recovery of 112.0 d
https://www.sciencedirect.com/science/article/pii/S2588931123002900

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Against medical advise, I think your plan of stopping Orgovyx might be a good one. Recovery seems to begin right away, but it is quite slow. It might suit you better to stop sooner and benefit from testosterone's return on your trip. You could have a PSA before leaving. But run it past your oncologist to avoid any regrets.
oh, France in May. I hope it is wonderful.

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I am post Orgovyx 4 months and have not fully recovered. That said, I had significant testosterone at 6 weeks and tested at 350ng/dl at 7 weeks. In the study recovery was quicker and at a higher percentage (about 80% vs 50%) for younger participants. It seems the results vary a lot. If you are young and healthy and had a high pre-Orgovyx testosterone recovery will be faster.

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I noticed a glimpse of my old self 2-3 post Orgovyx. Steady climb to feeling better. My T was just a tad below normal 2 months after finishing treatment.

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Do you mean 2=3 months post Orgovyx or weeks or days/

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Profile picture for gently @gently

Against medical advise, I think your plan of stopping Orgovyx might be a good one. Recovery seems to begin right away, but it is quite slow. It might suit you better to stop sooner and benefit from testosterone's return on your trip. You could have a PSA before leaving. But run it past your oncologist to avoid any regrets.
oh, France in May. I hope it is wonderful.

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@gently Thanks. I’ve followed your comments and appreciate your info!

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My testosterone recovered quickly after stopping ADT (Orgovyx) for Gleason 9 Stage 2 cancer confined to the prostate.

Prior to Orgovyx & radiation therapies, at age 71 my testosterone was 454.

After 11 months on Orgovyx my testosterone was practically non-existent (less than 6) and PSA was undetectable (< 0.01). Rather than continuing the recommended 18 months of Orgovyx, against medical advice I decided to take a "holiday".

Subjectively, after stopping Orgovyx I began to feel better after just a few weeks. More energy, better stamina, noticeable improvement.

2 months after stopping Orgovyx my testosterone test was 430 -- almost fully recovered! PSA was 0.26.

Then I restarted Orgovyx. 2 months later my testosterone was again practically non-existent (< 6) and PSA was undetectable (< 0.01).

Oncologist concluded "no evidence of disease".

So I stopped Orgovyx permanently. A year later, today my testosterone is 450 and PSA is 0.26. Very pleased!

@robertov, of course no one can predict exactly how long the process of recovery will be for YOUR testosterone. It's just a crystal-ball guess.

All that said, I believe your odds for a quick testosterone recovery are more likely if you're reasonably fit, exercise regularly, eat right and generally have a healthy lifestyle.

Best wishes.

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That decision is so very personal. I too had to cancel travel plans and stop planning new travels due to this not-invited disease. I think we have all had to change life plans unexpectedly and disappointingly. I'm 65, recently retired, same as my wife, and am frustrated by what life handed me in the form of Pc. But that's life. An old but true saying, life is what happens while you're planning it.

I feel oh so lucky that mine was caught early and is not metastatic, as so many people on this forum are dealing with. I plan on living a very long, engaged, and active life. I found a Doc I trust and will follow his directions to a T, which is why I am taking Orgovyx, going through radiation, and doing all I can to put this beast behind me for good. Everyone is different and the daily cancer routine gets old, but I will follow all recommendations (not blindly) to maximize my odds of a long unencumbered life once I beat it. But that's me on my own life journey, timeline, age, and goals.

Carefully evaluate your treatment goals and you do what's best for you and your life goals. Only you can do that and whatever path you take is the right one.

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Profile picture for retiredboomer71 @retiredboomer71

My testosterone recovered quickly after stopping ADT (Orgovyx) for Gleason 9 Stage 2 cancer confined to the prostate.

Prior to Orgovyx & radiation therapies, at age 71 my testosterone was 454.

After 11 months on Orgovyx my testosterone was practically non-existent (less than 6) and PSA was undetectable (< 0.01). Rather than continuing the recommended 18 months of Orgovyx, against medical advice I decided to take a "holiday".

Subjectively, after stopping Orgovyx I began to feel better after just a few weeks. More energy, better stamina, noticeable improvement.

2 months after stopping Orgovyx my testosterone test was 430 -- almost fully recovered! PSA was 0.26.

Then I restarted Orgovyx. 2 months later my testosterone was again practically non-existent (< 6) and PSA was undetectable (< 0.01).

Oncologist concluded "no evidence of disease".

So I stopped Orgovyx permanently. A year later, today my testosterone is 450 and PSA is 0.26. Very pleased!

@robertov, of course no one can predict exactly how long the process of recovery will be for YOUR testosterone. It's just a crystal-ball guess.

All that said, I believe your odds for a quick testosterone recovery are more likely if you're reasonably fit, exercise regularly, eat right and generally have a healthy lifestyle.

Best wishes.

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@retiredboomer71 Many thanks. I’m 74 so we are in sinilar circumstances aas far as age and aggressive cancer confined to the prostate. I understand everyone is different. I can’t recall ever having my testosterone level checked.

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Profile picture for jesse65 @jesse65

That decision is so very personal. I too had to cancel travel plans and stop planning new travels due to this not-invited disease. I think we have all had to change life plans unexpectedly and disappointingly. I'm 65, recently retired, same as my wife, and am frustrated by what life handed me in the form of Pc. But that's life. An old but true saying, life is what happens while you're planning it.

I feel oh so lucky that mine was caught early and is not metastatic, as so many people on this forum are dealing with. I plan on living a very long, engaged, and active life. I found a Doc I trust and will follow his directions to a T, which is why I am taking Orgovyx, going through radiation, and doing all I can to put this beast behind me for good. Everyone is different and the daily cancer routine gets old, but I will follow all recommendations (not blindly) to maximize my odds of a long unencumbered life once I beat it. But that's me on my own life journey, timeline, age, and goals.

Carefully evaluate your treatment goals and you do what's best for you and your life goals. Only you can do that and whatever path you take is the right one.

Jump to this post

Thanks @jesse65. Tavel is what I love doing. I followed my RO advice in starting on Orgovyx. That surpressed my cancer so I was able to travel to Portugal. But importantly is gave me time to research and think about what option would be best for my life goals. I didn’t go through the IMRT he wanted and eventually landed on SBRT Proton therapy. Congratulations to you on finding your way through this situation none of us wanted. Good luck on getting the results you need to meet your life goals. I’m looking forward to an active life.

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