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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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I started Orgovyx three months ago. SEs include a pounding heart, sleeplessness, a jelly roll developing at my waist, fatigue, what I would characterize as a complete loss of libido, brain fog and occasional dizziness—that may be the result of higher blood pressure (often in the upper 170s/80s), occasional blurred vision (likely blood pressure-related), and hot flashes. I take the dose mid-morn. SEs occur randomly all day and night. My EBRT is to start in August. It was originally scheduled for May, but my SpaceOr (now Barrigel) procedures got delayed.
I'm on Original Medicare with Part D provided by a low premium Aetna plan. I selected the low premium policy because up until August 2023, I'd never needed special drugs. Oddly, depending on the pharmacy I check, price can vary enormously (700 to 2400 per month). I now receive it from a specialty pharmacy called Onco, in Louisville, Kentucky, for $678 per 30 doses. (My RO found this place and referred me to it.) I believe after I reach approx. $3000 out of pocket, it will be gratis. My RO recommended Orgovyx as an alternative to Lupron because it allows a more rapid recovery of testosterone post-ADT.
Now, I have a question for anyone in the know. Orgovyx feels like a very strong drug to me. I understand that the same dose is prescribed whether you weigh 300 lbs or 150 lbs. I'm on the lighter side and am sorely tempted to start an experiment of taking the dose every other day versus daily. My PSA has dropped from 16.8 to 1.45 after two months. If it continues to drop after my experiment, then it seems the Orgovyx dosage might be reduced if a person's weight is considered. Is this just wishful thinking?
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2 ReactionsFirst of all, thank you for your post and thank you for mentioning the pharmacy in Kentucky. I also am on Orgovyx and my out of pocket expense through my current specialty provider would be about $1,200/mo ($8k max out of pocket) if I wasn’t receiving financial aid for the drug. I will check them out in case I lose my financial aid in the future.
I’m sorry that you’re having the side effects that you’re having. I was counseled that exercise can lessen the side effects so that’s what I’ve been doing albeit for the 3 weeks since I started. I too have had some dizziness and brain fog plus but I’m also on Zytiga and wasn’t experiencing these SE until I added Zytiga.
As for the dosage being tailored to body weight that’s an appropriate question which I’ve wondered about myself. I assume that if the drug becomes more widely used Myovant may do a study to see if other dosages would be safe and appropriate.
Good luck on your journey.
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1 ReactionThanks for your post. I too have been on ORGOVYX (3 years now). Excellent results. I have Advanced Prostate Cancer. I have been having similar side effects. What i have noticed is that the side effects have increased over time. So i feel this is an incredibly powerful medication. Exercise seems to be the only thing that helps with the side effects i found. But it is a battle to continue to exercise because of the side effects of fatigue etc. i find that i have to adopt an attitude of “just do It” and ignore physical feelings of side effects. I regard exercise as a necessary “medication” good luck and take care
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3 Reactionsi was diagnosed with APC , high PSA, high gleason score, few spots in bones lit up during MRI, had biopsy of bone in hip area and found cancer cells . My doctor(Dana-Faber) began Lupron injections then I followed up with 4 chemo infusions, Followed by regular Lupron injections. PSA went down to 0.002. In 2021 switched from Lupron to Orgovyx. PSA still at 0.002 . Bloodwork and exam every 3 months
very short version of med history
Kishan
Reiter urology
SBRT resolved two lymph nodes and continues to shrink 3 rd
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1 ReactionYou are the care of a good urologist and RO at UCLA! We have to do our part. I learned after being on Orgovyx for 6 weeks that I should not eat when I am hungry and exercise when I feel fatigued when I know they are false hunger and false fatigue caused by medication!
Actually lost 4-5 lbs
Side effects of Orgovyx and xtandi after 2 months are very minimal except blood sugar spike
Pickleball 3x a week
And go to
gym, cardio and stretching mostly 6 x a week
Chronic oligomestatic one lymph node
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