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What's your experience with Orgovyx (relugolix)?
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?
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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! 🙏🏼
Forgot - I am on Orgovyx also and starting salvage radiation next week, ergo the NON bloating fiber supplement. Gas is a NoNo for radiation!
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1 ReactionYes. I too have a MUCH slower transit time since my surgery and no one seems to know why. Not constipated ( dry hard stool) but trouble bearing down and voiding - probable pelvic floor injury from that f***ing ‘less invasive’ robot.
Anyway, I have been on Miralax for FIVE years - it does work - and I have been using HEALTHY FIBER , which is a non fermentable, non bloating supplement available on Amazon 3X/day.
With all that I still had to get a Squatty Potty to enhance the abdominal pressure when on the toilet. What was once one of the most pleasurable parts of my day has become torture. Hope these tips are of helpful! Best
Phil
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1 ReactionBeen on Orgovyx for almost a month. I have a history of slow intestinal transit but was able to manage it with OTC meds. Orgovyx seems to have made my constipstion much worse. Fear I will have to stop it. Was scheduled for four months. I think 1 month is all I can do. Maybe every other day? Will discuss with RO. Anyone else dealing with this issue? Constipation is listed as one of the side effects of Orgovyx. Thanks!
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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1 ReactionHey star, Maybe I’m picking this thread up late but did you have primary treatment - ie surgery or radiation before this regimen? I would assume you had, but some patients want no part of either one.
Out of curiosity, did it take all 20 months for your T to rise? In other words, did you get to enjoy several months of normal T and the quality of life it brings before you had to restart the ADT?
A 20 month vacation after being on it for 10 months is absolutely wonderful. I’ve been on first and second generation ADT for five months now and I’m tired of the way I feel. I miss feeling like I used to before starting it. Stronger, less emotional, more focussed. Part of every day is an absolute struggle.
My MO wants me to be on Orgovyx and Zytiga for another 19 months. I am going to fight for a vacation starting the middle of July 2025. That would put me on ADT for total of 15 months, 12 of which would be post salvage radiation.
May I respectfully ask what stage cancer you were diagnosed with and what your Gleeson score was? I am a stage 4 N1 Gleason 9 patient so the stakes are quite high, but quality of life is worth something too.
Bob
I m surprised the MO didn’t order one of those PET scans that can see the cancer at 0.2 or higher. Instead he just started the med. again.
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1 ReactionMy MO had me start Orgovyx in March of 2022...PSA at start was 13.4
28 days later my PSA had dropped to 0.38
I stayed on it for 10 months, then took a vacation beginning Jan 15, 2023
PSA and T were slow to rise....so stayed on vacation.
After 20 months of vacation, PSA two days ago was 2.42.
So I am back on it.
About six months ago I asked my MO of his other patients taking Orgovyx how long do they stay off before going back on...he said 6-8 months. So this therapy is working well for me and I feel blessed and thankful
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