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What's your experience with Orgovyx (relugolix)?

Prostate Cancer | Last Active: Nov 8 3:43pm | Replies (171)
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@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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Replies to "At the suggestion of my urologist, no removal of the prostate was suggested. I started taking..."
mark1952 | @mark1952 | Oct 25 4:27pm

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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golferdto | @golferdto | Nov 8 3:39pm

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.

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