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What's your experience with Orgovyx (relugolix)?

Prostate Cancer | Last Active: 2 days ago | Replies (193)

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@garylr

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.

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Replies to "I've been reading posts here for a few months now, and have found them helpful. I'm..."

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.