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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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Kevin:
Thank you.
I am now 10 weeks post ADT Orgovyx, and the last week or so I have felt my walking pace picking up a bit. Other SEs abating also.
Will not be testing T or PSA until 6 mos post radiation in November. 🤞
Sounds as if you had a relatively quick T recovery after 18 mos of ADT, so good for you and good to hear.
Best, Michael
I did 18 months of ADT starting in Jan 17, last 90 day shot was May 18. By October, T was 135, by February it was 400+. As T recovered, SEs, hot flashes, muscle and joint stiffness, fatigue and genitalia shrinkage disappeared.
Kevin
Good results from Orgovyx so far. Side effects not as bad as Lupron injections. 2nd time using after a 1 month reduction in PSA from 17 to 6. Unfortunately PSA went back to 15 last month and my doctor is going for 3 months on Orgovyx this time around. Side effects are hot flashes, insomnia, depression and muscle loss the first time. This time getting more side effects 3 weeks in. Tiredness, joint aches and some diarrhea unfortunately this time. However, no muscle weight loss yet this time. Will update more later. Hope for all of us.
I hope you have found more information on calcium by now, but in case you haven’t:
My husband is on calcium citrate which does not require much stomach acid to absorb. (He also takes Pepcid)
He was already taking 400 mg of magnesium oxide prior to ADT (degarelix). Leg cramps at night began after starting calcium supplements, an additional 400 mg of magnesium oxide was okayed by his cardiologist and the leg cramps stopped.
Building bone requires more than calcium and vitamin D.
If you haven’t had your baseline DEXA you should get one. I wish you well in your fight against PCa.
I'm just one week in following SBRT. Continuing my daily workouts. So far, just a little fatigue and the "wooziness" or slight "fog" others have reported.
Orgovyx recovery time?
Reread edva1943 post, and that was helpful.
4 wks post 4 mos orgovyx and still struggling with fatigue and "wooziness ".
Age 73
However I think that I feel a bit better (10%ish).
Anyone with "recovery" from Orgovyx, or other ADT agents have experience to share?
Try Theraworks at Walgreens or amazon
My RO's name is Albert Attia, Mayo Clinic Jacksonville, FL. As an update, my Decipher score came back .69 which put me in the high-risk category. Doing 6 months of Orgovyx.
maverick75, Thank you for your post.
You talking about your journey got my interested to know if which Mayo Clinic you are getting therapy and who if your great sounding RO?? Sounds like you did well when you found him. Take care.
Calcium tabs with D3 from Costco Purple 600 each swallow hole