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.
My issues with orgovyx is very similar to many. I took it for a period of 12 months along with 45 radiation treatments. It had no been two years and I still feel the effects. Still tired all the time, sweats at night and sometimes during the day. So far my T has risen from zero to 128 but it is slowing going down not up. Have developed advanced peripheral neuropathy which causes severe balance issues. Had nerve tests which indicated damage to the nerves below my back which according to two doctors, comes from the 45 radiation treatments. When I stated orgovyx there was approx 7 side effects but now over 40. Very disappointed that the orgovyx was prescribed so early after they received approval. Cute may be worse than the disease.
Update. My balance issues have been getting worse so I underwent Vascular and nerve tests. Vascular test came back normal however nerve test showed that the nerves to my lower extremities are damaged. Three doctor stated that the damage was definately caused by the 45 radiation treatment underwent. To clarify, prior to any ration tests I had 12 targets inserted in my prostate to better guide the radiation. I am now using a cane and the nerve specialist indicated it will only get worse. There is NO cure for this and at no time did anyone inform me that the radiation tests could cause this. Of course the radiologist takes no responsibility. She informed me that even though targets were inserted in my prostate they cannot be held liable for any issues. Between the Orgovyx side effects, especially the weight gain, and the neuropathy, I question why the urologist recommended leaving the prostate in. Several friends with prostate cancer that had it removed and with a few radiation treatments are doing quite well. They did have issues for about six months but all cleared up and they are living normal healthy live. Lesson learned, get multiple options.
I was 72 when I stared the treatment’s. I took Orgovyx for 12 months and really didn’t start having the side effects until after I stopped. I recently posted what I an undergoing now.
I will be finishing my 6 months of Orgovyx in 8 days. Luckily I got a grant for it and my cost is zero. I was also on Erleada at the same time and was in a study for that and also had a zero cost, I stopped Erleada when I developed a full body rash they would not go away for a month.
Orgovyx-PSA went down from 40 to less than .01 very quickly I have hot flashes, gained some weight, lost a lot of muscle, just in the last few weeks started to have joint pain in my already bad knees, but the mental issues have been the worst. Hard to explain what was happening but emotionally I was all over the place, I am forgetting things, have to really concentrate on what I am doing. But it did its job before and after my surgery and hopefully I will recover quickly. In the end I am glad I chose Orgovyx over Lupron.
I still did construction work almost every day but there where some days that I had to take off
Just past the four month point of Orgovyx with two more to go. LDR brachytherapy in early October, IMRT at present with six more treatments to go. PSA prior to starting Orovyx was 15.4, the three month reading was 0.3. Testosterone went from 582 to basically zero. Hot flashes have been intermittent, albeit annoying as they have impacted sleep. Fatigue has become increasingly evident, although the concurrent radiation may be a co-contributor. Weight gain has been negligible as has muscle loss (didn't have much of either to work with). For the most part, my blood panel has been relatively unaffected by the Orgovyx.