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How Long on Orgovyx
Hello All:
I am asking for members to tell me how long they have been on Orgovyx. My prostate was removed (Gleason score of 9) and two years after removal my PSA numbers began to rise to .9. Scan did not detect any cancer. Oncologist put me on Orgovyx because I cannot have radiation. PSA went back to < .01. Then I went off it for about 6 months and my PSA went back up to .14. My oncologist told me to go back on Orgovyx. I want to know of others on this forum who have had similar experiences and how many times they have gone on and off Orgovyx. Merry Christmas!
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@denkea
Rereading your original comment, I see that you’ve only been on Nubeqa 1 month, and have probably had a PSMA PET scan recently, and it showed nothing.
I’m sitting here watching football and reading these in between plays and I am missing stuff. Sorry about that.
If your PSA went down from 32 to .4 in one month it sounds like you’re in great shape. Your next test will probably be undetectable. As I’ve mentioned, I’m 25 months undetectable with those two drugs. I was on abiraterone for 2 1/2 years before, and was only undetectable one month. When I stopped they found and zapped a metastasis on my spine and one month later I went undetectable. Found it in my first PSMA pet scan. Nubeqa Works really great, I know a lot of people on it and they are all doing well. The only people I know that have had problems with it, have stopped, taking it and tried starting again, and it has not been as successful for some of them.
You could get two or three years out of your current treatment before you have to worry about the next step.
@jeffmarc
Jeff, I've had 3 PSMA pet scans. One when my PSA was 22. The second when it was 12 and the 3rd when it was 32. All showed no sign of cancer.
I've been on Nubeqa and Orgovyx for 9 months now.
@denkea
You said above “one month on Orgovyx and Nubeqa and It went down to .4.”
Has it gone down further since or has it stayed right at that level?
Just interested to know, with somebody who’s had it for so long, what’s going on?
At one of the ancan.org weekly advanced prostate cancer meetings somebody came in who had his cancer come back after 30 years, had a Gleason nine, and one treatment got him 30 years. It goes dormant for some people. Really interesting results.
You didn’t mention how long ago you had surgery and radiation. Were you on active surveillance for a long time? My brother was on it for about six years before his cancer finally needed treatment.
@jeffmarc
Hi Jeff. I've had 4 PSA tests since March 2025. It's been virtually undetectable. < 0.1
Next test is in January 2026.
I was 48 yo when I had my Rad Pro followed by salvage radiation a year later.
@denkea
That is a great result. Orgovyx and Nubeqa Are working for you like it does for me and a lot of other people I know. I don’t know how long it will last I don’t expect to get much more than three years out of it, but you never know. In my case, my genetic problem can make the time shorter than it is for other people.
As I mentioned, we are just waiting for the next breakthrough for those that have a failure from this pair of drugs.
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1 Reaction@heavyphil said:
>if you let ONE lesion grow to a discernible size, how many more are
>waiting in the wings to do the same thing?
I think the fear is additionally if you let one lesion grow it may spawn new metastasis.
@lsk1000 said, "Mine insists I remain on Orgovyx + Nubeqa for two years."
Yes, that's my friend's situation, PSA near zero, simple soft tissue location zapped with radiation and no metastasis seen, serious side effects from Orgovyx, but his oncologist recommended 18 months at the start and it's only been a year.
There are always concerns and "playing it safe" might be to stay on the ADT continuously, then again we want to see actual numbers, if the extra "safety" is on the order of 1% and the side effects are becoming overwhelming, you don't want the theoretical safety to keep you miserable when the odds are that you'll be fine with a break. And the perceived side effects suggest that real damage is being done so "safe" starts to lose its meaning.
@carbcounter
If you get a lesion, it is likely that the cancer is in your bloodstream. It can show up anywhere bone, tissue or decide to go dormant for many years. There’s never any way to know what’s coming.
If it has spread beyond the prostate originally, that is possible to be happening as well.