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Urologist said I could stop Orgovyx. Your thoughts?

Posted by johnny8924 @johnny8924, Mar 25 7:56pm

Age 73, in very good health. Diagnosed with Gleason 9, August 2024. Been taking Orgovyx since then, Not quite 20 months. Completed 28 sessions of IMRT April 2025. Latest lab results a few weeks ago: PSA < .04, testosterone < 1. My urologist said I could go off Orgovyx when my medication runs out in 15 days. I’m somewhat hesitant to do so because who knows how my PSA and testosterone levels will be affected. Thanks for any feedback, thoughts, etc.

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heavyphil | @heavyphil | May 18 6:01am
In reply to @thmssllvn "A metanalysis of 13 high quality studies with 10,000 patients: JAMA Oncology JAN 2026 : Definitive..." + (show)
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A metanalysis of 13 high quality studies with 10,000 patients: JAMA Oncology JAN 2026 : Definitive Radiotherapy and optimal ADT for Prostate gland confined disease. PET CT Scan Neg for metastasis
"... reduced estimated benefits being observed beyond androgen-deprivation therapy durations of 9 to 12 months. A near-linear increase in risk of mortality from causes other than prostate cancer was observed with longer deprivation,
0, 6, 9, 12 months of ADT
Intermediate: One risk factor, Two risk factors, high risk, and very high risk factors

uration of androgen-deprivation therapy (HR for 28 vs 0 months = 1.28, 95% CI = 1.09–1.50, P = .002). Compared with 36 months of treatment, risk of other-cause mortality was lower with 3 months (HR = 0.60, 95% CI = 0.45–0.80) and 6 months (HR = 0.77, 95% CI = 0.66–0.89).

The optimal androgen-deprivation therapy durations based on 10-year risk of distant metastasis were 0, 6, and 12 months and “undefined” for patients with one NCCN intermediate-risk factor, two or more NCCN intermediate-risk factors, NCCN high-risk disease, and NCCN very high-risk disease, respectively.

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@thmssllvn Great study - thank you! Did they ask whether a next level hormone receptor blocker (Nubeqa/Zytiga) had similar results?
You’ll still produce T, but the receptor sites on cancer cells are blocked. It may also block receptors on other sites in the body, leading to some of those same SE’s…but worth a shot. IMO.
Phil

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jime51 | @jime51 | May 18 6:21am

Is your cancer localized or do you have metastasis? I'm scheduled to go off Orgovyx at 18 months, but I was Gleason 7 with cancer in the gland and in two adjacent lymph nodes. I want to be off ADT before any remaining cancer becomes castrate-resistant, which seems to happen around or after the two year mark. I also had 44 IMRT treatments.

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johnny8924 | @johnny8924 | May 18 7:01am
In reply to @jime51 "Is your cancer localized or do you have metastasis? I'm scheduled to go off Orgovyx at..." + (show)
Profile picture for jime51 @jime51

Is your cancer localized or do you have metastasis? I'm scheduled to go off Orgovyx at 18 months, but I was Gleason 7 with cancer in the gland and in two adjacent lymph nodes. I want to be off ADT before any remaining cancer becomes castrate-resistant, which seems to happen around or after the two year mark. I also had 44 IMRT treatments.

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@jime51

Gleason 9 diagnosed in August 2024. Cancer was localized to prostate, no metastasis. Urologist said it was okay to stop Orgovyx in April 2026, approximately 20 months after being on it. 28 sessions of IMRT completed in April 2025. Last week's blood test results: PSA less than 0.04, testosterone 55.

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Jeff Marchi | @jeffmarc | May 18 11:15am
In reply to @lsk1000 "@jeffmarc Thanks Jeff. Looks like I might have to tolerate the fatigue a little longer, which..." + (show)
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@jeffmarc Thanks Jeff.

Looks like I might have to tolerate the fatigue a little longer, which btw is making me an efficiency expert finding ways to do things around the house with as little energy expenditure as possible, and accept looking more like the Pillsbury Doughboy for a little longer,

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@lsk1000
You do have to consider how aggressive your Gleason nine is, whether or not you had other Aggressive issues.

You could stop early and get monthly blood tests. If your PSA starts to rise, go back on the drugs. I do know people that have stopped and restarted repeatedly, but The PSA rise occurs quicker with every stop and restart.

Everyone is different so you never know how it will work out for you.

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lsk1000 | @lsk1000 | May 18 1:12pm
In reply to @jeffmarc "@lsk1000 You do have to consider how aggressive your Gleason nine is, whether or not you..." + (show)
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@lsk1000
You do have to consider how aggressive your Gleason nine is, whether or not you had other Aggressive issues.

You could stop early and get monthly blood tests. If your PSA starts to rise, go back on the drugs. I do know people that have stopped and restarted repeatedly, but The PSA rise occurs quicker with every stop and restart.

Everyone is different so you never know how it will work out for you.

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@jeffmarc Thanks Jeff, I’m aware of that. I’ve been on ADT 3 separate times and always responded well. That will be my go to debating point. Concerning exercise I get plenty. My fatigue is incessant, likely due to several variables, all major morbidities, ADT meds just one of them. I won’t oppose my doc if he comes up with some a good argument for 2 years in my specific case and genetic test results.

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denis76 | @denis76 | 6 days ago

What an interesting topic! I didn't have IMRT, but I had three bone metastases and several lymph node metastases. I only had chemotherapy in 2024, and I've been on ADT for two years and Erleada for 14 months (God bless her). My PSA has been 0.02 for seven months, and it continues to drop very slowly.

Am I correct in assuming I need to wait longer before taking a break from ADT because I have Gleason 9 and an aggressive cancer? When should I start counting? From the start of ADT or from the moment my PSA drops to zero?

As always, Jeff is amazing, God bless you and keep you healthy, my friend!

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jime51 | @jime51 | 6 days ago
In reply to @johnny8924 "@jime51 Gleason 9 diagnosed in August 2024. Cancer was localized to prostate, no metastasis. Urologist said..." + (show)
Profile picture for johnny8924 @johnny8924

@jime51

Gleason 9 diagnosed in August 2024. Cancer was localized to prostate, no metastasis. Urologist said it was okay to stop Orgovyx in April 2026, approximately 20 months after being on it. 28 sessions of IMRT completed in April 2025. Last week's blood test results: PSA less than 0.04, testosterone 55.

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@johnny8924 I'm surprised by your Testosterone number. My blood test last week showed PSA <.01 and Testosterone <10. Orgovyx has really annihilated it! I understand the desired chemical castration goal is <50 Testosterone, so you're very close. Our cases are a bit different, so I don't have anything definitive for you, but I will start taking an Orgovyx holiday at the end of June and be tested quarterly. Hopefully all your cancer has remained contained. I had 26 IMRT to pelvis generally and 18 to prostate specifically.

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geneva26 | @geneva26 | 6 days ago

I have a 7 Gleason score of 3+4 with a contained protrusion of the prostate. I have concluded 40 radiation treatments and will be discussing with my oncologist the possibility of going on "active surveillance" after concluding 12 months of Orgovyx. Is anyone familiar with the "Prolaris Biopsy Test Report" and how it may influence a decision?

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jim18 | @jim18 | 6 days ago
In reply to @geneva26 "I have a 7 Gleason score of 3+4 with a contained protrusion of the prostate. I..." + (show)
Profile picture for geneva26 @geneva26

I have a 7 Gleason score of 3+4 with a contained protrusion of the prostate. I have concluded 40 radiation treatments and will be discussing with my oncologist the possibility of going on "active surveillance" after concluding 12 months of Orgovyx. Is anyone familiar with the "Prolaris Biopsy Test Report" and how it may influence a decision?

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@geneva26 Prolaris is specifically targeted for decisions for 3+4 to continue active surveillance or go to treatment. If you had this test before radiation, it was probably used in the recommendation for treatment. The Decipher test is the one that is used to predict probability of recurrence. Probably some overlap. In any case you should be having PSA tests every 3 months for the first year or 2 after ADT ends, than every 6 months to catch any recurrence early.

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ededed | @ededed | 6 days ago
In reply to @jime51 "Is your cancer localized or do you have metastasis? I'm scheduled to go off Orgovyx at..." + (show)
Profile picture for jime51 @jime51

Is your cancer localized or do you have metastasis? I'm scheduled to go off Orgovyx at 18 months, but I was Gleason 7 with cancer in the gland and in two adjacent lymph nodes. I want to be off ADT before any remaining cancer becomes castrate-resistant, which seems to happen around or after the two year mark. I also had 44 IMRT treatments.

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@jime51
I quit after one year of Orgovyx in 2022. I had Gleason 8, 42 IMRT sessions, and had a lot of joint pain due to the ADT. I had pc spread to my seminal vesicles and a suspected site on the outside of the colon. My PSA has hovered around 0.1 after quitting.

Because of my concern about distant metastasis I take a daily dose of Turkey tail mushroom tea or capsules.

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