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Low Testosterone
It has been 15months since I stopped ORGOVYX after being on it for 1 year. My PSA stayed at 0.03. My Testosterone during ADT dropped to 8. But after I stopped ADT, it went up to 85. But now it is 46. PSA is 0.03 My Gleason Score 9 but cancer was in the gland and I was treated with 5 sessions of SBRT at UCLA. I am 90. Any one in this situation?
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@denkea
Are you Undetectable now?
What treatments are you currently on?
How long since your last reoccurrence?
What was your original Gleason score in PSA?
@jeffmarc
Jeff ~~~ It was 1995. I have no clue what my Gleason score was. If they told me I've forgotten. It seems soooo long ago.
I went through Salvage radiation a year later as my PSA climbed.
It stayed pretty low or dormant until about 4 years ago. I've had 3 PSMA scans. First when my PSA was 22. Second when it was 12 and the third when it was 32. All Scans showed no incidence of recurrence.
The first year on Lupron was pretty miserable. I was happy to take a ADT vacation.
About a year and half later the PSA started climbing again.
That was when I had my 3rd PSMA scan.
I was put on Nubeqa and Orgovyx in March 2025. One month later PSA was .07. Three months later it was .02 and has stayed pretty much the same ever since.
My Doc asked me if, after a year on Nubeqa and Orgovyx if I wanted to do another ADT vacation. Because the side effects are very minumal compared to Lupron I decided I might as well stay on them if it keeps my PSA down.
I know you had an AUS installed recently. When do you have it activated?
I had mine installed in November last year and activated in December and am quite happy with the results. Actually kind of life changing to a degree.
Hope yours goes as well.
regards,
@denkea
It’s surprising that you had to have your salvage radiation so soon after the prostatectomy, but have gone so long without a reoccurrence. You must’ve had a low Gleason 3+4 or 4+3.
You may know, I was diagnosed in 2010, Had surgery it came back 3 1/2 years later I had radiation that came back 2 1/2 years later and I’ve had 4 reoccurrence so far. I have BRCA2 so it makes mine much more aggressive. I’m on Orgovyx and Nubeqa and have been Undetectable for 32 months. Originally the Gleason was 4+3 after prostatectomy. I was on Lupron and Zytiga before the current drugs and it barely worked. Left me with a metastasis in my spine because I was only undetectable for one month in 2 1/2 years.
I’m 78, Will be 79 in a few months. We’re not far apart there.
They are going to activate my AUS Friday. I hope it works. There’s something weird about the tubes coming off of it. It feels like I have a circle of tubes right next to the top of the pump button. It’s only been in for five weeks, but I recovered pretty quickly. No swelling I could see minimal pain, Just when I sat on the stitches.
I go to a weekly advanced prostate cancer online groups at ancan.org. You could actually go there and listen to one of the previous meetings to hear what it’s about. They’ve been helping people for about 15 years with prostate cancer questions. The guy is really know what’s going on and what to tell people to do for treatment. We’ve seen people come in with reoccurrence after 15, 20 and 25 years. Even people with Gleason nine having it come back that slowly. But usually at least three doctors in the meetings. They really try to encourage people to switch to Orgovyx and Nubeqa. They worked so much better for most people. If you want to get some advice and recommendations from people with a lot of experience, you might attend a meeting.