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What's your experience with Orgovyx (relugolix)?

Prostate Cancer | Last Active: 5 days ago | Replies (135)

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@pueblokid1

Thank you for the info on Orgovyx, my psa has started to rise after being cancer free for 8 years. One cancer doctor wants to put me on this drug but the urologist who did the surgery wants me to wait until it shows up on a psma pet scan. The first scan didn't show it had spread anywhere. Not sure what to do or who to believe. Any comments would help

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Replies to "Thank you for the info on Orgovyx, my psa has started to rise after being cancer..."

My first scan didn’t locate any new cancer cells, so we moved on to something called a Choline C-11 pet scan.
( I believe it is a more intense imaging process). As a result, cancer cells were found, and I started a regimen of hormone therapy which I am still on today.
I hope this helps, and I wish you all the best.
Phil

I had RRP in 2021 PSA went from 11.6 prior to surgery and dropped to 0.37 post surgery. My PSA continued to climb so 6 months after having my prostate removed (PSA up to 0.69) I had 34 rounds of salvage radiation to the prostate bed. PSA rose during radiation treatments to 1.29. PET/CT scan did not show anything. I switched medical teams and finally got a Urological Oncologist. We decided to wait on any ADT and keep monitoring everything. My 3rd PET/CT scan (PSA up to 6.56) did show a tumor in my chest. My Urological Oncologist hooked me up with an Oncologist that was overseeing a drug trial. The Metacure trial was for guys with Very High Risk Localized and Low Volume Metastatic Prostate Cancer. I was put on Orgovyx along with a second trial drug Erleada. When I started the trial 03/23 my PSA was up to 13.46. One month into the trial PSA dropped to 0.15. I finished 5 rounds of radiation to my chest May 1st.
My PSA has dropped to 0.02 now, PET/CT scan shows no metastasis and other smaller nodules they saw in my lungs (but did not light up on PET/CT) have also reduced in size or are gone. So far the side effects have been manageable. Hot flashes and some fatigue are the side effects most notable. Some minor breast enlargement and mussel loss are going on as well. If I had started ADT before the Metastasis showed up I would not have been eligible to be part of the trial. So for me waiting to start ADT was a good thing. Monday I go in for lab work and to meet with my medical team. Please feel free to contact me if you have any questions. Wishing you all the best,Robert

Your urologist may be right...you don't say what your PSA results are so difficult to provide feedback. The one cancer doctor you describe may be simply following traditional treatment thinking, PSA is now rising after being undetectable, initiate systemic therapy...ADT.

More mainstream clinical practice is to image with newer scans such as Plarify, PSMA -68, Aximun, which are more sensitive than the C11 Choline. These scans can locate the site(s) of recurrence at PS below .5 though .5-1.0 is more of the "sweet spot."

The question you may want to ask yourself, will imaging inform the treatment decision...if yes, then do it.

What newer imaging can do is inform the treatment decision, particularly for radiation. As you can see from my clinical history in the attached chart, we did a Plarify scan when PSA rose to .7. It located the recurrence, a single PLN. We treated that with 5 SBRT and added six months of ADT to clean up the micro-metastatic PCa. Without the imaging, the radiologist has nothing to "shoot" for.

Also, do a literature search for doublet or triplet therapy, in my experience, suggesting mono therapy is not mainstream thinking.

Kevin