Urologist said I could stop Orgovyx. Your thoughts?
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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Intermittent therapy and watchful waiting often work well. The exact science on it is still developing, and what is appropriate depends on initial severity, but for many common cases it looks to me like in the future the initial treatment periods will be shorter. There is variation between people and over time so you track your PSA and T. Exactly what levels are OK may also be refined over time, but with treatment suspended many people seem to maintain quite low numbers for years. This is good - this is what effective treatment should do! Perhaps additional treatments will also be developed to monitor more effectively, be even more accurate than just PSA and T numbers, "precision medicine" is a big trend today for just these kinds of treatments and measurements.
It may even be that more normal intervals help with maintaining overall health and longevity.
@jeffmarc
I suggested that to my RO who said it was better to wait 6 months. The reason was that if the result was favorable - i.e. low psa - it could have been caused by residual Orgovyx in my system. He wanted me to wait 6 months before another psa test.
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1 ReactionIs a PSA result of less than .04 generally indicative of a person being cancer free?
@johnny8924 I don’t think ‘cancer free’ is a real thing once you’ve had this. Undetectable, and ‘in remission’ are pretty close…
0.04 would certainly qualify as both but how long that number holds is the important thing.
Phil
@cadaddy
There is no Residual Orgovyx In your system. Its half-life is 25 hours. It quickly dissipates after that. I’m a little puzzled about the comment that it’s residual in your system, Since it’s not. Now your testosterone is not going to go down quickly, but after three months it does. I would definitely not want to go more than three months before getting a PSA test, but you have to be proactive about that a tell your doctor that you want it.
I know for me, just reducing the drugs cause my PSA to go from .2 to 1 in 18 days. That was while I was still on ADT.
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1 Reaction@jeffmarc
The comment about residual was my terminology, not my RO's. What he tried to explain was that the effect of the Orgovyx took a while to wear off and giving a 6 month break would make sure those effects had stopped. By six months my testosterone would have rebounded somewhat and my psa would be more valid.
@cadaddy
That’s just it Orgovyx use results in the testosterone level coming up much quicker than six months. Once it hits 50 other studies have shown that could be problematic for PSA rise. More likely in three months, the Testosterone will be Closer to 200, maybe much higher. As a result, I would not want to wait six months.
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
@cadaddy If you know your testosterone is returning it would be good to test at 3 months and then 6 months with both PSA and total testosterone. If it still feels dead at 3 months than it is okay to delay. I knew mine was coming back at 6 weeks, got a total testosterone test at 7 weeks that was over 300. There will be a PSA bounce with the testosterone.
I read a common theme "Is your cancer metastatic"...That changes everything. I took a break from ADT several times during my 5 years, only because I knew it was beating the crap out of me...the last time was 3 months without and the cancer roared back, PSA rising to near next-level treatment and PET-PSMA showing abnormal activity. (In other words..."It's BAAAAACK").
I think we all know it's, in layman's terms, a "crap shoot". I read a report from a leading Oncologist who stated the progression in simple terms..."(to paraphrase, We use what we know works until it doesn't, then we switch to something that works until it doesn't..."
Cancer is smarter than Doctors and patients...Keep the Faith...Cancer can't take that away from you!!
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3 Reactions@deccakid
You really should be on an ARPI (Zytiga, Darolutamide, Enzalutamide, apalutamide) . That way you could stop ADT for a little while, and your PSA would not rise. I stopped ADT for eight months while on Darolutamide (Nubeqa) And my PSA didn’t rise at all, Why testosterone increased to 50 so my oncologist thought I should go back on ADT.
I know a lot of people on Darolutamide Alone because it has almost no side effects for most people and keeps the PSA undetectable. You might talk to your doctor about this. This might be the best way to keep your cancer under control.
One thing being on an ARPI does is prevent Castrate resistance. This is newer information. They didn’t know this years ago. They didn’t put me on one until I became castrate resistant.
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