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What's your experience with Orgovyx (relugolix)?
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?
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I've been reading posts here for a few months now, and have found them helpful. I'm now far enough into treatment that I thought I might have some useful experience to report.
My specifics:
68 years old
Diagnosed 4/23 - MRI says it's localized, biopsy says Gleason 6
Plan is to do active surveillance
Subsequent genetic testing of biopsy samples suggests I might be higher risk
Uptick in PSA number in spring of 2024 raises more concerns
New MRI says it's still localized, but a saturation biopsy returns some Gleason 7s
Fall, 2024, we decide to treat it - EBRT and 6 months of Orgovyx
Orgovyx started in mid-September
EBRT started in mid-November, concluded December 31 (Happy New Year!)
Within a week of starting on Orgovyx, I was experiencing hot flashes/sweats - often followed by chills. These have generally declined in frequency, but still persist after 4 months. I think alcohol consumption exacerbates the hot flashes. I think exercise moderates them.
Also within a week of starting Orgovyx, spontaneous morning erections disappeared (they were common before).
About one month in, I had some routine blood work done for a Medicare "wellness check," and my testosterone level was down to 7, from about 480 six months earlier - so the Orgovyx was doing its job.
Four months in, I can still achieve an erection sufficient for penetrative sex, but it takes some work. And on top of that, for the first time since I was in 6th grade or so, I have absolutely no interest in sex! This has been a little disorienting for me, and a little disconcerting for my wife - but we've talked about it, and she's being a trooper.
My testicles have shrunk to roughly half their previous size. This is a little unsettling - but life goes on.
I'm looking forward to getting off Orgovyx in a couple of months - and hoping that some of the side effects reverse themselves.
Happy to answer any questions I can for folks here.
Yes, my libido has fallen to zero with ADT. Orgovyx 6months, and 33x radiaton. Two years ago I had surgery, I was two years clean. Also my penis seems to fade away and testicals too. I hope proper recovery after seven weeks, when ADT ends. Hot flashes, insomnium. Anxiety maybe, maybe its because cancer not only ADT that makes me dark. But maybe things will be better in spring - has to be.
I've had issues with sleep quality, too. It's hard for me to separate how much of that has to do with the ADT vs. the radiation therapy (needing to pee at least a couple of times a night) vs. anxiety about just the cancer diagnosis itself. My prognosis is very good, but there is still that nagging sensation in the back of my mind about "cancer."
Spring is on its way (assuming you're in the Northern Hemisphere), and that always raises my spirits. Hang in there, and I hope things will improve for you as the days get longer and you get to the end of the ADT treatments.
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1 Reaction1-888-463-6332 Thanks @tnola123 Reporting helps all of us.
Starting in Fen 2021 I took Orgovyx for 12 months and received 45 radiation treatments which included inserting targets in my prostate. My T dropped to near zero and after two years it rose to 133. Now it is dropping and is down to 102 as of Dec 2024. My T was 397 to start with and I was 72 when treatments started. I have now been diagnosed with peripheral neuropathy with no nerve reactions below my knees. I have been told by two doctors that the neuropathy was caused by the radiation treatments and there is really no solution. Bottom line get multiple opinions before moving forward.