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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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Took Orgovyx July 1 (3) 2 and 3 and stopped due to confusion and heart pain....(have aneurysm OH Dbl ByPass 5/20) took every other day July 7 to July 18 and night of July 19 woke up to pounding heart----Docs want to change my carvedilol to metropolol and Orgovyx Pharm says heart meds increase side effects----men have died taking it -small % in lit but no number....I don't want to die from the ADT before I even have chance at the Beam
They want me to try every 3rd day BUT it will only take one POUNDING PULSE TOO MANY TO BLOW OUT THE 4.6 ANEURYSM...........now what?????What did they use Orgovyx came along? Why won't anyone talk to me-----????Doctors not readily accessible .....
Gleasons on May12 showed 5 samples at 4+5=9 all L side Prostate size=58 perineural invasion present PSA all2's til Jan 9 then Mar 10 June 16.7----Nuc Med Scan = NoBone PSMA PET CT Clear except at Sternum (pain there for 2 yrs every day after OH)2nd opinion Doc says Prostate has bulge is ready to burst ---something she saw in wording of MRI MAr 3 or Fusion Biopsy?---docs n diff systems and they can't see each other's tests....they also want brachytherapy but I just can't do that and big surgeon in Phily says "too late for surgery" soon it will be too late for the patient....and in will be in lymphs and/or bones and more if it breaks open
It does, thanks. I've been thinking of experimenting with what time I take it. If the hot flashes are worse for the few hours after taking it, I don't want to move to taking it at night.
I started taking Relugolix in late October of 2021.
My PSA number was 1300. Within several weeks it was down to 0.15. Side effects are similar to Lupron.
Myopathy, hot flashes, and gynecomastia. I take Relugolix every morning between 9, and 10am.
Hot flashes are usually over around 12: 00 pm.
I hope this helps.
Phil
@web265, I think this is a great idea to start a thread dedicated to Orgovyx. I modified the title a wee bit. I believe that @itterac and @natem have experience with Orgovyx (relugolix) and @kujhawk1978 and @upnort may have something to add.
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