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.

chippydoo | @chippydoo | 6 days ago

In reply to @mjm8491 "@chippydoo What is grade 2?" + (show)

@mjm8491 Grade 1 was a prickly feeling with a feeling of increasing warmth aka mild. Grade 2 is moderate, Grade 3 is severe.

mjm8491 | @mjm8491 | 5 days ago

In reply to @jeffmarc "@mjm8491 I am one of the few people that doesn’t have fatigue from low testosterone. Sure,..." + (show)

@jeffmarc
Have you taken any adt holidays over the years, and what were the results?

kenv267 | @kenv267 | 5 days ago

I was on Orgovyx for 6 months, hot flashes, fatigue and weak. Stopped end of August, still got the hot flashes, but niw have radiation cystitis and radiation proctitis, due to radiation treatment
I have the UFPTI proton therapy' 41 sessions.

Jeff Marchi | @jeffmarc | 5 days ago

In reply to @mjm8491 "@jeffmarc Have you taken any adt holidays over the years, and what were the results?" + (show)

@mjm8491
Yes. My oncologist and I talked about it and after seven years of being on ADT, we figured my testosterone would never come back, since I was 77. I stopped Orgovyx For eight months and then my testosterone hit 50 and was going up almost 25% a month. My oncologist wanted me back on ADT so I started back on. In More than nine years, I’ve taken an eight month break.

mjm8491 | @mjm8491 | 5 days ago

In reply to @jeffmarc "@mjm8491 Yes. My oncologist and I talked about it and after seven years of being on..." + (show)

@jeffmarc
Why did your oncologist want you back on ADT?

Jeff Marchi | @jeffmarc | 5 days ago

In reply to @mjm8491 "@jeffmarc Why did your oncologist want you back on ADT?" + (show)

@mjm8491
One clinical trial showed if you have more than 50 Ng/cl of testosterone, it can cause Prostate cancer cells to grow and spread. Because I have BRCA2, she did not want me to take that chance.