1. < Prostate Cancer

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.

myash | @myash | 1 day ago
In reply to @vircet "@myash How are your symptoms? I'm just starting my 2nd month on Orgovyx and the only..." + (show)
@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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2 replies
vircet | @vircet | 1 day ago
In reply to @myash "Hi, I have been on Orgovyx for 3 months of a scheduled 6 months. It brought..." + (show)
@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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1 reply
myash | @myash | 1 day ago
In reply to @vircet "Thanks for the update. I completed my SBRT last Monday. My 1st post-radiation PSA will be..." + (show)
@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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boniyabes | @boniyabes | 8 hours ago
In reply to @myash "Hi, I have been on Orgovyx for 3 months of a scheduled 6 months. It brought..." + (show)
@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.

Jump to this post

Kind of different procedure than what I am going through. Had prostatectomy in 2014 after mri, biopsy, etc. Had rt 6 months later. PSA results after rt is < .06. Then another rt 4 yrs later due to rising PSA. In 2020 PSA was rising again, and still opted for “watching, but when PSA reached 5.5 in Oct 2024, I had a PET scan and the prostate cancer metastasized in different areas, and rt is not preferred for treatment, so I decided to have hormone therapy, Orgovyx. After 1 1/2 months of taking Orgovyx, PSA was down to .18, and In Feb 2025, my PSA was .1 but I plan to take it for a year. (My Hematologist told me to take it indefinitely.) I’m just wondering why you take Orgovyx before RT. I will be seeing my Hematologist in July and will request for PET scan if the cancer is still in my system, and will also ask to have Zytiga if it helps to kill the (remaining, if any) cancer cells. Hang in there, buddy. We will have this pass, too.

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2 replies
web265 | @web265 | 7 hours ago
In reply to @boniyabes "Kind of different procedure than what I am going through. Had prostatectomy in 2014 after mri,..." + (show)
@boniyabes

Kind of different procedure than what I am going through. Had prostatectomy in 2014 after mri, biopsy, etc. Had rt 6 months later. PSA results after rt is < .06. Then another rt 4 yrs later due to rising PSA. In 2020 PSA was rising again, and still opted for “watching, but when PSA reached 5.5 in Oct 2024, I had a PET scan and the prostate cancer metastasized in different areas, and rt is not preferred for treatment, so I decided to have hormone therapy, Orgovyx. After 1 1/2 months of taking Orgovyx, PSA was down to .18, and In Feb 2025, my PSA was .1 but I plan to take it for a year. (My Hematologist told me to take it indefinitely.) I’m just wondering why you take Orgovyx before RT. I will be seeing my Hematologist in July and will request for PET scan if the cancer is still in my system, and will also ask to have Zytiga if it helps to kill the (remaining, if any) cancer cells. Hang in there, buddy. We will have this pass, too.

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I’m just wondering why you take Orgovyx before RT.

My guess is to weaken the cancer cells in the hopes of making the RT more effective.

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myash | @myash | 5 hours ago
In reply to @boniyabes "Kind of different procedure than what I am going through. Had prostatectomy in 2014 after mri,..." + (show)
@boniyabes

Kind of different procedure than what I am going through. Had prostatectomy in 2014 after mri, biopsy, etc. Had rt 6 months later. PSA results after rt is < .06. Then another rt 4 yrs later due to rising PSA. In 2020 PSA was rising again, and still opted for “watching, but when PSA reached 5.5 in Oct 2024, I had a PET scan and the prostate cancer metastasized in different areas, and rt is not preferred for treatment, so I decided to have hormone therapy, Orgovyx. After 1 1/2 months of taking Orgovyx, PSA was down to .18, and In Feb 2025, my PSA was .1 but I plan to take it for a year. (My Hematologist told me to take it indefinitely.) I’m just wondering why you take Orgovyx before RT. I will be seeing my Hematologist in July and will request for PET scan if the cancer is still in my system, and will also ask to have Zytiga if it helps to kill the (remaining, if any) cancer cells. Hang in there, buddy. We will have this pass, too.

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Hi, my first question is did you have your prostate removed before it had spread? The reason for doing the Orgovyx before radiation is that it lowers the testosterone that the cancer feeds off of. Also helps kill or weaken the cancer so the radiation will be more effective. I will have 8 more treatments after today. Then continue the Orgovyx for a couple more months. But I was curious about things coming back for you if you had your prostate removed. I look forward to hearing back from you.

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vircet | @vircet | 3 hours ago

@myash What was your PSA and Gleason Score when you started treatment? I read in another discussion thread that for Gleason 8 or higher, ADT is for 18 months minimum. My PSA was 20.06, Gleason 7 (3+4), my oncologist said we would see if could be off Orgovyx after 8 months or a year (I am just on my 5th week). I understand you intend to discontinue Orgovyx after two months following your last radiation. I wonder if it's not too soon?

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