My experience with Orgovyx / Relugolix - Prostate Cancer N...

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My experience with Orgovyx / Relugolix

Vynbal profile image
5 Replies

For men out there getting ready to start ADT, or having difficulty with their current ADT medication, I thought I would share my recent experience with 6 months of Orgovyx.

I was diagnosed in April with 3+4 GG2 PCa, but was considered unfavorable intermediate risk due to amount of cancer found (7/13 cores; one core 100% involved). Treatment consisted of 6 months ADT (Orgovyx) starting in June, and 5 weeks (20 fractions) of PBT in July and August. ADT ended at the end of November.

Prior to ADT my PSA 6.6 and TotalT 734, but after 4 weeks PSA dropped to 0.8, T 6.1.

My side effects included total ED and loss of libido, some insomnia, occasional hand muscle cramps, and some fatigue. I had almost no hot flashes or night sweats (less than 5 instances). I did lose about 5 pounds of muscle mass, but with an aggressive walking schedule and intermittent fasting I lost about 15 pounds while on ADT, rather than gaining weight.

By October (4 of 6 months in) both PSA and T had become undetectable.

My last pill was November 27, 6 weeks later my Testosterone has recovered to 643, and PSA is still a respectable 0.2. My insomnia and hand cramps are gone, but I still have some fatigue, and my sexual SE are still pretty bad. Before treatment I would say I had a 10 on erections and libido, now maybe a 2.

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Vynbal
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5 Replies

hopefully it hangs at .2

maley2711 profile image
maley2711

It seems that , no matter what the specific ADT drug, men have a range of SEs....so far, relatively mild for you!! CONGRATS!!!

I'm in month 5 of Orgovyx with even less SEs. Similar 3+4 to you. Had SBRT 5 sessions on Mridian Viewray. I have no libido, thus don't even know if I have ED, no cramps, no insomnia, very few hot flushes ( very mild ones ). Maintaining weight with walking & resistance exercises. Best of luck to you for continued high quality of life.

j-o-h-n profile image
j-o-h-n

2 is better than none..............

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/23/2022 11:29 PM EST

Vynbal profile image
Vynbal

6 month post-ADT update. After about 3-4 months my sexual function recovered to about a 7, and I think that is all I am likely to get. My brain would like more, but my body is quite content staying where it is! I have no other lingering side effects and feel quite well. My PSA has continued to creep upwards from 0.2 at 6 weeks post ADT to 0.5 at 6 months.

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