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.

@vircet

@myash How are your symptoms? I'm just starting my 2nd month on Orgovyx and the only side effect so far is loss of libido on week 3. My oncologist said that we would see if I could be off Orgovyx after 8 months or a year. I was Gleason 7 (3+4), positive on 8 of 14 cores, PSA 10.06

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Hi, I have been on Orgovyx for 3 months of a scheduled 6 months. It brought down my psa from 19.9 to 5.7 after 2 months. It messes up my stomach and I have several hot flashes a day. My testosterone is down to about nothing. I have 10 radiation treatments left of a scheduled 28. The prep for it a pain. I also have several urinary issues as a result also.

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@myash

Hi, I have been on Orgovyx for 3 months of a scheduled 6 months. It brought down my psa from 19.9 to 5.7 after 2 months. It messes up my stomach and I have several hot flashes a day. My testosterone is down to about nothing. I have 10 radiation treatments left of a scheduled 28. The prep for it a pain. I also have several urinary issues as a result also.

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Thanks for the update. I completed my SBRT last Monday. My 1st post-radiation PSA will be mid-July. My libido was gone after 2 weeks on Orgovyx. I wish you well on your remaining treatments.

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@vircet

Thanks for the update. I completed my SBRT last Monday. My 1st post-radiation PSA will be mid-July. My libido was gone after 2 weeks on Orgovyx. I wish you well on your remaining treatments.

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Thanks, good luck to you also!

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