1. < Prostate Cancer

What's your experience with Orgovyx (relugolix)?

Posted by web265 @web265, Jun 7, 2022

Mods, if you think this redundant, please move or remove. I thought it might be helpful to have an orgovyx thread similar to the lupron thread...

Hello all, I've been reading a lot on this board, posting a little, since my discovery about a year ago.

PSA 11 at discovery 13 just prior to RP, Gleason 4/3, 8 of 12 cores, RP in Sept of 2001.
Margins clean, right pelvic lymph removed & tested clean, minimal invasion in blood vessels and nerve tissue.
PSA 3 mos later <.2
PSA 3 mos later 0.039
PSA 3 mos later 0.091 off to the radiation oncologist.

PSMA PET CT showed nothing.

Orgovyx prescribed and just had my markers inserted and starting radiation in about a week (40 sessions)
My Orgovyx experience so far...about 10 days in...
No particular weakness or fatigue so far, but, hot flashes and "restless leg" at night which is really hurting my ability to sleep.
I work out four days a week and run 2 miles a day after workout. I haven't noticed any weakness yet, seem pretty much the same.

Has anyone discovered any supplements or come across any research as to the restless leg issues and hot flashes? or more to the point, any way to minimize/mitigate? I'll of course talk to the docs on this but I'm looking for something natural, I'd prefer not to get into the "swallow the spider to catch the fly" medicinally.

I've also been taking it at 9am(ish), anyone notice any difference taking it at different times of the day?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

heavyphil | @heavyphil | May 1 3:29pm
In reply to @firespooks "Has anyone tried the new “Patch” that is out there , that is supposed to be..." + (show)
@firespooks

Has anyone tried the new “Patch” that is out there , that is supposed to be the NEW hormone therapy ? If so how did it work. My Urologist never heard of it.

Jump to this post

It’s actually not that new. It uses estradiol to suppress T. Less side effects due to the fact that it is absorbed thru the skin and does not go thru the liver (doesn’t raise enzymes).
Phil

REPLY
vircet | @vircet | May 8 6:58pm
In reply to @brownsf "I’ve been on Orgovyx for about 2 months. My PSA has become undetectable . The main..." + (show)
@brownsf

I’ve been on Orgovyx for about 2 months. My PSA has become undetectable . The main side effect I’ve experienced is hot flashes a couple of times/day for a few minutes. To me it’s an annoyance but a small price to pay considering the benefits. I hope guys won’t be scared off by the list of possible side effects which, for legal reasons , must be all inclusive. Most men will not experience many of them. Some might. One advantage of Orgovyx over injected hormones is that you can always stop if you are unlucky enough to have bad side effects.

Jump to this post

I'm 1-1/2 months in Orgovyx. I woke up 4 times after midnight feeling a little bit hot in the body and cold legs as if they were a little wet for a couple minutes, and then I would be okey as if nothing happened. My worst experience to date.
I finished my SBRT treatment 18 days ago; my oncologist said that my immediate side effects would probably peak around the third or fourth week. I will see what happens next week. After that I hope things will get better.

REPLY
1 reply
heavyphil | @heavyphil | May 9 8:23am
In reply to @vircet "I'm 1-1/2 months in Orgovyx. I woke up 4 times after midnight feeling a little bit..." + (show)
@vircet

I'm 1-1/2 months in Orgovyx. I woke up 4 times after midnight feeling a little bit hot in the body and cold legs as if they were a little wet for a couple minutes, and then I would be okey as if nothing happened. My worst experience to date.
I finished my SBRT treatment 18 days ago; my oncologist said that my immediate side effects would probably peak around the third or fourth week. I will see what happens next week. After that I hope things will get better.

Jump to this post

Yes, I think the insomnia was the most annoying thing, since I am usually a sound sleeper. All good now 3 months post Orgovyx.

REPLY
View MoreView Less
Please sign in or register to post a reply.