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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.

golferdto | @golferdto | Nov 5 11:35am

My issues with orgovyx is very similar to many. I took it for a period of 12 months along with 45 radiation treatments. It had no been two years and I still feel the effects. Still tired all the time, sweats at night and sometimes during the day. So far my T has risen from zero to 128 but it is slowing going down not up. Have developed advanced peripheral neuropathy which causes severe balance issues. Had nerve tests which indicated damage to the nerves below my back which according to two doctors, comes from the 45 radiation treatments. When I stated orgovyx there was approx 7 side effects but now over 40. Very disappointed that the orgovyx was prescribed so early after they received approval. Cute may be worse than the disease.

REPLY
golferdto | @golferdto | Nov 8 3:39pm
In reply to @golferdto "At the suggestion of my urologist, no removal of the prostate was suggested. I started taking..." + (show)
@golferdto

At the suggestion of my urologist, no removal of the prostate was suggested. I started taking orgovyx in march of 2021 for prostate cancer. PSA of 14. In addition I receive 45 radiation treatments. Initial reaction was mild but got progressively worse. Sweats at any time, lack of energy, gaining weight after I had just lost 80 pounds, overall feeling of being tired all the time. After 12 months my PSA level was down to .2 and my T level was at zero. A further 12 months go by and my PSA level is still .2 but my T level is now at 133. Still tired all the time, no sex drive at all and starting to have balance issues and numbness in legs and feet. Diagnosed with peripheral neuropathy After seeing many doctors, the leg and balance issues were probably caused by the radiation treatments. Forward to July 2024. T level is at 120 PSA level is still at .2. Still tired all the and stumbling is getting worse. Meeting with neuropathy specialist to determine treatment. Wish someone had informed me of the drawbacks of not removing the prostate and using orgovyx and the 45 radiation treatments.

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Update. My balance issues have been getting worse so I underwent Vascular and nerve tests. Vascular test came back normal however nerve test showed that the nerves to my lower extremities are damaged. Three doctor stated that the damage was definately caused by the 45 radiation treatment underwent. To clarify, prior to any ration tests I had 12 targets inserted in my prostate to better guide the radiation. I am now using a cane and the nerve specialist indicated it will only get worse. There is NO cure for this and at no time did anyone inform me that the radiation tests could cause this. Of course the radiologist takes no responsibility. She informed me that even though targets were inserted in my prostate they cannot be held liable for any issues. Between the Orgovyx side effects, especially the weight gain, and the neuropathy, I question why the urologist recommended leaving the prostate in. Several friends with prostate cancer that had it removed and with a few radiation treatments are doing quite well. They did have issues for about six months but all cleared up and they are living normal healthy live. Lesson learned, get multiple options.

REPLY
golferdto | @golferdto | Nov 8 3:43pm
In reply to @mark1952 "Hello, golferdto, Really sorry to hear you are not doing better! Just wondering: are you still..." + (show)
@mark1952

Hello, golferdto,

Really sorry to hear you are not doing better! Just wondering: are you still on Orgovyx? If not, how long were you on it? If you are still on it, has that been continuous since March 2021? Are you an older person?curious because I am 72.5 yo and am doing four months of Orgovyx and 40 IGRT sessions with Halcyon equipment. Thanks! Best wishes for better days! 🙏🏼

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I was 72 when I stared the treatment’s. I took Orgovyx for 12 months and really didn’t start having the side effects until after I stopped. I recently posted what I an undergoing now.

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