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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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Ironically, but logically I learned a supplement for hot flashes from my 50 year old daughter going through menopause. She takes a supplement called “Evening Primrose Oil” 1000 mg am and pm. It cut her hot flashes down from 3 per hour to 3 per day. I’ve been on it for about a month and it has slowed the frequency down for me as well, My radiation oncologist told me that he has heard similar results with it as well.
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1 ReactionHi, thanks for your reply. I’ll probably give it a try soon. Maybe a small dose m
aiseman,
How much longer you plan to be on Orgovyx, since you are handling it so well?
4-10 additional month or 18 -24 months total.
Did you talk your oncologist about Intermittent Hormone therapy?
Yes
Just finishing up 4 months on Orgovyx. Never had a hot flash. Have lost weight, if anything. Very pronounced weakness and loss of strength about a couple weeks in. Joint and muscle pain almost from the start. Restless leg syndrome disappeared about a month in. Lessening of libido almost from the start. With effort and concentration, have managed one orgasm each month that I have been on Orgovyx. Took tadalifil to help night-time urination. Didn't help urination but no other deleterious effects that I could sense. It seems that Orgovyx has caused some stomach cramping and discomfort. Plus, I think it has definitely made my urination more urgent and frequent. Some of the painful twinges in the joints and muscles have been severe but only last 2-3 seconds. However, they made me feel that my joints were at risk of fracture. Until recently, I was an active 73 year old. Orgovyx has made me feel 100 years old. I hope I can rebound. I hope the ADT will prove to be worth it (not sure how I would ever really know...). Think I should have had the gene-based prognosis tools, decipher score, etc. As so many others have said, "Make informed decisions and don't second guess them." Best of luck to you! Stay strong.
Hey Mark, your side effects from Orgovyx are so different than mine, but as we keep hearing ad nauseum, “we’re all different”…
I also had a Gleason 4+3 unfavorable, treated with surgery and now again with ADT and salvage radiation.
That word “unfavorable” really moves us up a notch - almost to Gleason 8. Taking the Orgovyx, despite the side effects, is the best thing you could have done. Don’t regret it…Believe in it.
Phil
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