Recovery from Orgovyx?

Posted by budzikg @budzikg, Mar 26 11:20pm

I took orgovyx for about 1 year. Had 28 IBRT treatments for Gleason 6-7 prostate cancer. While on orgovyx my PSA was undetectable. I have been off orgovyx for about 6 weeks now. How long does it take to return to normal? I have had absolutely no sex drive while on it, which I expected. I have not had an erection in all that time. My wife says that I was much easier to get along with when I was on the drug, and that has changed since I have been off of it. While on the drug I would start crying at the drop of a hat. That behavior has fortunately gone away! However, why am I still getting these DAMN HOT FLASHES!!! When I was on the drug, I had hot flashes but they were very occasional and fairly mild. Since stopping orgovyx, they have gotten much more frequent and much more intense. I break out in a drenching sweat each time and feel like I am going to pass out. Has anyone else experienced this? Any suggestions? Please help.

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ozelli | @ozelli | Mar 27 1:22am

28 radiation sessions and a year of orgovyx for Gleason 6 and 7 is a bit surprising. If you don’t mind me asking, was it a 4 + 3 and in quite a few cores? I would expect that it may be a few months before the orgovyx wears off and it may even be more. The hormones seem to affect different folks in different ways and there may be no one answer.

gently | @gently | Mar 27 3:15am

Thanks for the warning. The orgovyx literature offers 90 days for recovery of testosterone levels. Radiation alone can cause a reduction in levels. I've read that radiation can continue to have effect for two months after the last treatment. I have wondered if a person could use testosterone patches after this treatment until recovering levels of T. Or, if it wouldn't be advised because of increasing risk of bcr.
Avoiding hot drinks, caffeine and alcohol are purported to help with hot flashes. Sometimes an ice pack to the upper chest can alleviate the intensity of the flash. Sorry you are having this and I am really grateful to know what is ahead.

web265 | @web265 | Mar 27 7:26am

Thanks for the information as well. I've been on it for 22 mos now and will be off it at the two year mark. Looking forward to taking a break. We'll see how it effects me.
The docs who prescribed it also added a free testosterone test to my next blood test and my guess is going forward to see how it bounces back.
I'll try to remember to update here...

michaelcharles | @michaelcharles | Mar 27 9:41am

4/5 mos on Orgovyx as part of Salvage treatment w/ 37 IMRT sessions

Took a good 3 - 4 mos after finishing both txs for SEs to abate 95%.

I do feel well and that I have substantially recovered.

Still have mid-afternoon fatigue, but also 73/74

At 8 mos post ADT, Testosterone had recovered to 80% of pretreatment level. Feel fortunate for that.

However I still feel different after Surgery and Salvage Radiation w/ADT .

My short term memory is a bit worse and I misread words, almost as if I am dyslexic.

Is it treatment or older age, or the combination?

Here's wishing you a good recovery.

budzikg | @budzikg | Mar 27 11:18am

In reply to @ozelli "28 radiation sessions and a year of orgovyx for Gleason 6 and 7 is a bit..." + (show)

I should have written IMRT not IBRT. Of the 12 cores the doctor took, 4 were 4+3, 4 were 3+3, 2 were 3+4, and 2 were benign. My PSA was 5.3 and I am 74 yo.