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?
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
Let 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.
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.
Thank 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.
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.
Perfect! Keep it up!
I suggest using a personal trainer with good qualifications to ensure that your workout is appropriate for your goals
I’m following the following general approach 20-30 minutes of aerobic exercise at a moderate heart rate level. Then 45 minutes of weightlifting and finally 10-15 minutes of stretching.
I do this 5 times a week and find that I burn enough calories that thus far (2 months of zytiga and orgovyx) I have maintained my weight.
I’ve read that it’s crucial to maintain muscle mass to avoid systemic diseases, so I’ve been very disciplined about this routine. Further, even when I’m feeling fatigued, that with willpower, getting in my workout, improves my energy level and general wellbeing.
Hope my limited experience helps!
I had a great run for 14 months with just Orgovyx; hot flashes were rare, weight gain, and gynecomastia were moderate. Unfortunately, the PSA number started to increase so my Oncologist added in Xtandi. Since then the PSA number is back down to less than 2, the weight gain, an gynecomastia have steadily increased. Unfortunately, exercising, and dieting on my own have not shown any results in controlling these side effects. My nutritionist has recommended either Nutrisystem, or Weight watchers.
I hope this can help you in some way. All the best.
Philnob
Almost 4 months after starting Orgovyx overall I’m happy with my experience. PSA is undetectable ( that’s the point isn’t it?). Hot flashes aren’t too bad at all. Testosterone is sub 20. Libido dropped big time by 28 days.
Keeping cancer at bay is the goal and Orgovyx is a great tool!
Good luck to all my fellow PCa brothers!
My hot flashes did not kick in until day 41.
started orgovyx almost 3 weeks ago..initial fatigue with loading dose. Had some insomnia..going to the gym..but am wondering does body just adjust to it? Like I don't get night time erections at the moment but during the day, they are pretty firm as before.. i worry sometimes it's not working lol.
But..definitely get the hot flashes..quite a bit..