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What's your experience with Orgovyx (relugolix)?

Prostate Cancer | Last Active: Jun 19 8:34am | Replies (142)

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@michaelcharles

Did not take notice of posting dates. My fault. Does anyone have any experience with the side effects of pelvic floor radiation, hormone therapy and/or the combination of the two together?

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Replies to "Did not take notice of posting dates. My fault. Does anyone have any experience with the..."

I guess I've had both if you consider the radiation I had to the prostate/surgical bed, 39 treatments and still on orgovyx for hormone therapy.

The only thing I really noticed with the treatments is my butt, anus I guess, got sort of sore. Irritated might be a better word. I only had one small bout of diarrhea for about 2 days. At the end of the treatments, say last 10ish days I started to get somewhat tired. I would workout after my morning radiation session but it took a really strong effort to get through those. Then it was a power nap when I got home. It took about 2 weeks before I started to notice improvement after the treatments were over. Now, back to normal as far as I can tell.

The orgovyx is really, really, really annoying. I have very little to no libido and testicles the size of black beans. I had "restless leg" syndrome when I started it and got strong hot flashes several times a day. At about 2 to 3 mos the restless legs disappeared and now at 6 mos I noticed the hot flashes have diminished greatly. I think I only notice a couple a week, usually during the day now. I guess your body gets somewhat used to it.

There are some potential issues with any hormone therapy like raising your cholesterol, blood sugar etc. I haven't had a full blood panel done yet, that's coming in the next couple months. I want this to aid in my decision to continue the hormone therapy or drop it early. I'll post if it shows the orgovyx caused any issues there.

My husband (Gleason 8, 45 sessions of RT) has been getting degarelix injections monthly for the last 12 months.
This blocks testosterone the same way as Orgovyx but is less expensive and more painfully administered.
Near zero testosterone has lots of side effects. My husband increased his magnesium supplements to get relief from nightly leg cramps. He takes calcium/vitamin D plus vitamin K2 to protect his bones. His red and white blood cells and platelets are just below normal. Iron won’t help as it is an androgen receptor issue, that is no testosterone.
Hot flashes still a nightly issue as well as daytime. He now abstains from alcohol and layers his clothing to mitigate the hot flashes.
He has 12 more monthly injections to go, but there is no sign of recurrence. Which is why he puts up with the side effects.