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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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Here's a link about ADT, includes IADT - https://www.dovepress.com/evolution-of-androgen-deprivation-therapy-adt-and-its-new-emerging-mod-peer-reviewed-fulltext-article-RRU
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1 ReactionKujhawk, xlnt article,
thanks for the link.
Retired boomer 71. Very helpful article and reasonably current thank you. I am G 9, nmCRPC 30 months post diagnosis and after 13 months of ADT plus Erleada and Robo surgery. My numbers are presently good but I am waiting for the other shoe to drop. This article gave me guidance so I thank you for that.
I Have been on Orgovyx for 17 months, with 1 more month to go. I talked my doctor into this drug vs Lupron since it is a daily drug and should provide a level response (no highs or lows). Additionally, when I take my last pill in April, my testosterone should begin rising soon thereafter. Lupron may hang around awhile before your testosterone starts to rise.
I found it best to take a bedtime. Main side effects: hot flashes and leg pain at night on occasion. Sex drive-none (as expected), emotional roller coaster (cannot watch sad movies! Weight gain. No fatigue--GOOD
Best of luck to others on this thread!
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2 ReactionsI don't have much to say about Orgovyx because I only took it for 27 days. My Urologist started me on Orgovyx the day he saw me in the office because of what he saw in the scans he ordered before our first meeting. The scans showed him that I had metastasized cancer in the bones and lymph. My PSA was 287 and a grossly abnormal prostate. So recommended I see Oncology and get started with that. Well he is so busy he put off me having a biopsy for several weeks and in that time I figured why go through that procedure when it is known what my condition is. So when the Urologist found out I didn't think a biopsy was needed he cancelled my scheduled hormone therapy and left me without any further treatment. So I started with hormone therapy and it was working because my PSA had dropped down to 27 after taking the Orgovyx. Guess I don't have any say in my own treatment and possible side effects.
The Dr needed to complete the workup necessary for a full diagnosis and development of a treatment plan or referral/inclusion of other specialists.
My MRI was in April and Fusion guided Biopsy in July.
You truncated the process and undermined the investigation needed to fully diagnose and prescribe treatment.
PCa diagnosis and treatment can be complex.
Yes, you have control of the decisions that you make; as does the Dr in treating you.
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1 ReactionI don't think the treatment process is complex at all. For a 71 year old man with advanced metastasized cancer in bones and lymph nodes with a PSA of 287 what on earth could a Biopsy add? My medicare will only cover the cheapest off the shelf treatment so I really don't need the added intrusive and not without complications of a biopsy.
“Know your enemy”. Sun Tsu
What?
All Medicare coverage is the same.
You must have Medicare Part A (hospital coverage), which is at no premium for most people.
Together with Part B (Drs and Outpatient) for which most people pay a premium.
Medicare Advantage plans must cover everything that Traditional Medicare covers.
So your Medicare and my Medicare are the same and provide the same coverage.
Maybe you should try to consult with a different Urologist, Oncologist or other physician who possibly might agree to prescribe ADT based upon your PSA and scans and forego a biopsy.
Good luck.