Orgovyx done. What to expect?

Posted by miked77 @miked77, Apr 15, 2024

I have been off Orgovyx for 7 days. Having increased number of hot flashes and still having leg pain at night. Libido still gone. Anyone have any experience similar and can give me some advice?
Thanks in advance.
Mike D

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for jojolalanne @jojolalanne

What was your T before and right after treatment? How long were you on Orgovyx ?
Thank you !!

Jump to this post

I was a low T guy at 257 and tested on Lupron at 3 months and my T was 2 and PSA undetectable. I go in for my first post tx test next week at 2 months. I did Lupron for 3 months then switched to Orgovyx for 3 months. Rule of thumb that I have heard is Lupron's half life is equal to the length that you took it and Orgovyx's half life is 25 hours. Post Orgovyx I had my first day of clarity after two weeks and it has gotten better every week since.

REPLY

My experience after coming off 12 months of Orgovyx...

Within the first three weeks, noticeable difference in fatigue, muscle and joint stiffness.

At around three months, genitalia felt like they had returned to pre-ADT "size." That made sense given T had recovered to 300+

The hot flashes, like fat cells, the last to go. Honestly, it wasn't until the six month point that I could say, good riddance, The fat cells, well, the 15+ pounds I gained took about a year to knock off. To be fair, I was reasonable, not strict, about diet and exercise, enjoyed BBQ, the Manhattans...Once I knocked off the late-night snacking, that helped considerably!

One thing which may speed up mitigating the side effects is exercise.

Kevin

REPLY
Profile picture for chippydoo @chippydoo

I was a low T guy at 257 and tested on Lupron at 3 months and my T was 2 and PSA undetectable. I go in for my first post tx test next week at 2 months. I did Lupron for 3 months then switched to Orgovyx for 3 months. Rule of thumb that I have heard is Lupron's half life is equal to the length that you took it and Orgovyx's half life is 25 hours. Post Orgovyx I had my first day of clarity after two weeks and it has gotten better every week since.

Jump to this post

Thank you for sharing ! I finished 6 months of Orgovyx , ended last Friday. I’m hoping to resume feeling closer to normal. Hopefully we’ve beat the culprit that’s forcing us to take these meds. Wishing you the best outcome !!

REPLY
Profile picture for chippydoo @chippydoo

I was a low T guy at 257 and tested on Lupron at 3 months and my T was 2 and PSA undetectable. I go in for my first post tx test next week at 2 months. I did Lupron for 3 months then switched to Orgovyx for 3 months. Rule of thumb that I have heard is Lupron's half life is equal to the length that you took it and Orgovyx's half life is 25 hours. Post Orgovyx I had my first day of clarity after two weeks and it has gotten better every week since.

Jump to this post

Lupron’s half-life is not related to how long you took it. I think you may have just made a typo when you wrote that. I was on it for six years and took six months shots, I then switched to Orgovyx. After being on Orgovyx For about six months, I stopped taking it and just stayed with my Darolutamide drug. My testosterone started rising pretty quickly And my oncologist had me go back on it when my testosterone hit 50.

Based on your numbers the half-life for me would’ve been six years. It definitely was not.

I do know of people that were on Lupron for a while and never got their testosterone back When they stopped. The results are variable, The age of the person Is also a factor.

REPLY
Profile picture for jeff Marchi @jeffmarc

Lupron’s half-life is not related to how long you took it. I think you may have just made a typo when you wrote that. I was on it for six years and took six months shots, I then switched to Orgovyx. After being on Orgovyx For about six months, I stopped taking it and just stayed with my Darolutamide drug. My testosterone started rising pretty quickly And my oncologist had me go back on it when my testosterone hit 50.

Based on your numbers the half-life for me would’ve been six years. It definitely was not.

I do know of people that were on Lupron for a while and never got their testosterone back When they stopped. The results are variable, The age of the person Is also a factor.

Jump to this post

I have to laugh at the generalized absurdity of my statement. My statement could apply to those of us that do it short term such as 6 months which was discussed with my doctor.

REPLY
Profile picture for jojolalanne @jojolalanne

Thank you for sharing ! I finished 6 months of Orgovyx , ended last Friday. I’m hoping to resume feeling closer to normal. Hopefully we’ve beat the culprit that’s forcing us to take these meds. Wishing you the best outcome !!

Jump to this post

Same to you. It seems like I felt a shift after 2 weeks off it and after two months I am feeling more like myself. Radiation after effects is the gift that keeps on giving here.

REPLY

My experience on orgovyx for 6 months was hot flashes through the day and night it came and went .night time was worst feeling tired was common needed to nap in the middle of the afternoon because half the time waking up at night multiple times. Some lag cramps muscle weakness.but at i guess worth it...my psa went from .50 to undetectable in 6 weeks...now im of it for 3 week and feeling great.

REPLY

I was on Lupron for 15 months a while back. Went on an ADT holiday but my PSA started to climb. This past March my PSA was 32.

Started a regimen of Orgovyx and Nubeqa in March after a PSMA showed no cancer. PSA went down to 4.1 in a month. 3 months later it was .24. August it was .07

I've been dealing with this crap for 30 years. Rad Pros in May 1995. Salvage radiation in 1996

Hated being on Lupron Orgovyx and Nubeqa have side effects but no where near as bad as Lupron.

Testosterone was 10 in April. So energy level is poor but I go 7 miles 6 times a week on a Schwinn Airdyne. Excersice has seemed to help.

HTH

REPLY

I was 62 when I stopped. Am 63 now. Doctor keeps saying raw numbers don't tell the whole story but what's the point of tests if the numbers don't mean anything.

I do have an appointment with a hormone specialist but it's not until next March (who says you don't have to wait as long for healthcare in the U.S.?) so I'm not even going to think about that for awhile.

REPLY
Please sign in or register to post a reply.