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.

@ava11

How much longer you plan to be on Orgovyx?

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3-7 month more; or 18-24 months total.

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@sirheartt

This is all helpful and inspiring. Just started with no side effects to announce and staying on my health n workout routine. Going to Italy in October and want to be well enough to travel n enjoy. Keeping the spirits up with positive mind set and my strong support of Friends to keep me on track. 1/3 through my Radiation and taking one a day, Orgovyx, to fight this cancer. I owe so much to my lady who has been with me thru this journey. Life is worth fighting for when you have people who Truly Care. You also find along the journey the few who Never really had your back. Gonna Lick this good!

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I went SCUBA diving for two weeks while on Orgovyx, and only 3 weeks after SBRT. It can be done.

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@gismo

Good to hear about a faster response once your off of Orgovyx. But in the meantime I am experiencing pain in my leg along with tingling a bit.

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@gismo, are you currently on Orgovyx? Have you talked to your oncologist or nurse about the tingling and pain in your leg?

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