Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
Been on Orgovyx and xtandi for 4 months to treat one pelvic lymph node. Too small so ucla did not recommend SBRT
Psa down from . 81 to .02 testosterone 6
RP 10 years ago
Adjusted to emotional turmoil but fatigue comes and goes
Have lost approx 10 lbs
Sleeping well
Seldom have hot flashes
Blood sugars are a bit difficult to keep in check
Have noticed an increase in hair growth
Exercise daily even if just a 3 mile walk is Key.
-
Like -
Helpful -
Hug
3 ReactionsThank you, I appreciate your input. Can you expand on what type of personal trainer would be the best. Are you referring to the type you would find at most fitness clubs, or someone more experienced in treating cancer patients. Up to now I am attending Yoga, Pilates, Qi gong, and stretching classes at my local senior center. I feel very good after every class, but it isn't helping with weight gain. I welcome any other suggestions you have. Thank you.
I got my trainer through my care provider Northwestern Medicine in Chicago. She specializes in cancer patients. Other centers of excellence like Mayo likely has similar free services.
I manage weight gain by using the NOOM app with help from my Apple Watch that estimates move calories. I used it before ADT and lost 25 pounds easily.
-
Like -
Helpful -
Hug
1 ReactionLet me first say that I have an advantage in that the prescription for exercise that I’ve come across in my PCa reading is consistent with the exercise routine I have followed for the majority of my life. So it is much easier for me than someone starting out
With that said, my understanding is that without the testosterone the muscles will atrophy so applying resistance training will maintain the muscle mass throughout one’s body. That’s important for weight loss as muscles burn more calories than fat cells. Increasing one’s muscle mass can have significant impact on calories burned. The other elements of my workout routine are used to balance the emphasis on weight lifting to create a more rounded healthy workout. In your situation it would burn calories perhaps more intensely that the exercise routine you noted
As to where to find a personal trainer. In my experience I have found it difficult to find someone who has the qualifications and experience to help me with various physical issues I’ve had over the years. I wonder if part of your healthcare team can suggest an appropriate person, (perhaps a physiologist or physical therapist) to get you started. It’s important to learn the proper form when weight lifting to optimize the impact and equally important to avoid injury. A gym personal trainer at a gym MAY be appropriate but I look to your team for suggestions on 1- how best to start and 2- how to maintain the program into the future
I hope my reply helps and good luck.
-
Like -
Helpful -
Hug
2 ReactionsThank you again Robert. I wish you the best going forward.
-
Like -
Helpful -
Hug
2 ReactionsMy MO had me start Orgovyx in March of 2022...PSA at start was 13.4
28 days later my PSA had dropped to 0.38
I stayed on it for 10 months, then took a vacation beginning Jan 15, 2023
PSA and T were slow to rise....so stayed on vacation.
After 20 months of vacation, PSA two days ago was 2.42.
So I am back on it.
About six months ago I asked my MO of his other patients taking Orgovyx how long do they stay off before going back on...he said 6-8 months. So this therapy is working well for me and I feel blessed and thankful
-
Like -
Helpful -
Hug
3 ReactionsI m surprised the MO didn’t order one of those PET scans that can see the cancer at 0.2 or higher. Instead he just started the med. again.
-
Like -
Helpful -
Hug
1 ReactionA 20 month vacation after being on it for 10 months is absolutely wonderful. I’ve been on first and second generation ADT for five months now and I’m tired of the way I feel. I miss feeling like I used to before starting it. Stronger, less emotional, more focussed. Part of every day is an absolute struggle.
My MO wants me to be on Orgovyx and Zytiga for another 19 months. I am going to fight for a vacation starting the middle of July 2025. That would put me on ADT for total of 15 months, 12 of which would be post salvage radiation.
May I respectfully ask what stage cancer you were diagnosed with and what your Gleeson score was? I am a stage 4 N1 Gleason 9 patient so the stakes are quite high, but quality of life is worth something too.
Bob
Out of curiosity, did it take all 20 months for your T to rise? In other words, did you get to enjoy several months of normal T and the quality of life it brings before you had to restart the ADT?
Hey star, Maybe I’m picking this thread up late but did you have primary treatment - ie surgery or radiation before this regimen? I would assume you had, but some patients want no part of either one.