How Long on Orgovyx

Gleason 9, been on Orgovyx since August 2024. Twenty-eight sessions of IMRT. Now, PSA less than 0.04, testosterone less than 1. Side effects from Orgovyx: brain fog, loss of libido, genitalia shrinkage, mood changes. Been exercising everyday for decades, 3-6 miles walking, half hour weight training, racquet sports 2-3 times a week. Oncologist says to remain on Orgovyx until August 2026.

I had prostatectomy in 2013, and had radiation of the prostate bed thereafter. My PSA was .06. When my PSA was rising I told my MO that I just want to observe. But when my PSA was 5.5 in Oct 2024, my MO told me that we have to do something. I had a PET scan and the cancer cell has spread out in different parts of my body but they are small and scattered that radiation is not feasible. He told me to start taking Lupron and Zytiga. But I did some research and I read online that Orgovyx is the new medicine for prostate cancer, so that is the medicine that I suggested to my MO for me to take. He did look online and he said if I want it, he can order it for me. I started taking in Orgovyx in Oct 2024 and in Feb 2025, my PSA was .1 so I suggested to my MO that I take the Orgovyx every other day instead of everyday because it is causing a lot of pain at the back of my right leg but he did not recommend it, and that I should just drink one everyday. But in May 2025, I started drinking one every other day anyway and then my PSA rose to ,3 in Aug 2025. I then suggested to have a PET scan but he said that PET scan is not necessary when PSA is this low. I will have lab work in Feb to check my PSA. I am praying that it will be lower than .3 because I have been back to drinking one Orgovyx everyday since Aug 2025.

@lsk1000 That’s correct; each of the 2nd generation androgen receptor pathway inhibitor therapies is different from each other and developed as (hopefully) an improvement over the previous one(s): see attached graphics.

Some doctors do intermittent ADT; I’ve never looked into it.

@rnpalarino1

I thought a PSA of 0.9 was quite low and not an issue. Natural PSA is around 1.0 without cancer.

@brianjarvis
A big reason tumors are missed When a PSMA scan is done is because the scan can’t see the smaller ones.

The scan cannot see metastasis smaller than 2.5 mm and one of the doctors at UCSF said that even a 5 mm metastasis a is hard to see and is missed many times.

That’s probably the main reason it is 30%.

@jeffmarc
So Jeff, My PSA was 32 and showed no signs of cancer. One month on Nubeqa and Orgovyx and it went down to .4. What's your impression with that info?
Oh, BTW I know you will be having and AUS installed coming up and I've had mine activated since Dec 2nd and couldn't be happier. Using one light pad a day and don't even think i need that.

@pesquallie

After prostate removal, PSA should be < .01. After two years min PSA began to gradually rise until it crested at .9. Consequently doctors consider this a biological recurrence and become concerned. So that is when they put me on Orgovyx because I cannot have radiation.

With such a high PSA it is possible you have a large prostate and don’t have prostate cancer. A friend of ours had a PSA of 50 for many years, had A huge prostate and had multiple biopsies. They never found anything. He died of lymphoma.

I can’t say what your situation is. When they do a biopsy, they only get one percent of the prostate. Did they do an MRI first and find anything? Then use a guided biopsy to target the spots where they did find something?

In your situation I would want to get another biopsy in the next nine months to a year. I would definitely ask for an MRI if that hadn’t been done already.

Great to hear how well your AUS is working. I’ve heard similar results from a few people. Drives me nuts to fill a pad in two hours when I’m running around Doing things.

@jeffmarc
Jeff ~~~ Been dealing with this crappola for 30+ years. Rad P followed by Salvage Radiation a year later.
PSA stayed low for a long time. Started ADT approx 3 years ago.
Lupron sucks. I've had 3 PSMA scans (the last was when my PSA was 32) all showing no signs of cancer.
Nubeqa a Orgovyx started March of this year.

@denkea
Well, that more clearly explains what’s going on. 30 years, and I thought 16 years was a long time to live with it.

Orgovyx and Nubeqa have been great for me. Kept me undetectable for 25 months after all these years. The two together have definitely reduced my side effects. The thing is, they never get rid of them completely so you’re always having to do things to work around them and keep your body in good shape.

.4 after all this time is a pretty good number. Probably still too low to get a PSMA pet test, though some doctors will do it at that point. You haven’t had chemo or Pluvicto yet. Hopefully, by the time your PSA starts rising some more they come out with a new drug. That’s what I’m hoping for, my Undetectable time with Nubeqa Is going to end eventually, And I’m hoping for the next discovery so I have something more to go on. In my case, I can take a PARP inhibitor since I have BRCA2, But I’ve been told it usually only lasts a few months when you’ve been treated as long as I have been.

Dealing with this is a real pain, but it’s better than the alternative. And people in our position aren’t feeling any pain at least, Life can go on pretty much as normal.

Here’s hoping for the best.