1. < Prostate Cancer

What's your experience with Orgovyx (relugolix)?

Posted by web265 @web265, Jun 7, 2022

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.

ava11 | @ava11 | Jan 28 12:50pm
In reply to @aiseman "I've now been on Orgovyx for 15 months and I haven't experienced any of the side..." + (show)
@aiseman

I've now been on Orgovyx for 15 months and I haven't experienced any of the side affects I was concerned with.

One of my concern while on Orgovyx was weight gain and maintaining physical activity. It was a pleasant surprise that I didn't need to make much of an effort to keeping my weight down.

Jump to this post

aiseman,
How much longer you plan to be on Orgovyx, since you are handling it so well?

REPLY
1 reply
myash | @myash | Jan 27 8:17pm
In reply to @garylr "Hi, Prior to starting treatments, I was taking a low dose (20 mg) of sildenafil "as..." + (show)
@garylr

Hi,

Prior to starting treatments, I was taking a low dose (20 mg) of sildenafil "as needed" - or about twice a week. Since starting on Orgovyx, I've probably taken a sildenafil tablet three or four times and didn't notice any unusual reaction.

With my libido sitting right around zero, there hasn't been much need for the sildenafil. Last time my wife and I made love was in early October. I'm hoping things will start getting back to normal when I get off the Orgovyx in mid-March.

Jump to this post

Hi, thanks for your reply. I’ll probably give it a try soon. Maybe a small dose m

REPLY
tomdom | @tomdom | Jan 27 7:42pm

Ironically, but logically I learned a supplement for hot flashes from my 50 year old daughter going through menopause. She takes a supplement called “Evening Primrose Oil” 1000 mg am and pm. It cut her hot flashes down from 3 per hour to 3 per day. I’ve been on it for about a month and it has slowed the frequency down for me as well, My radiation oncologist told me that he has heard similar results with it as well.

REPLY
garylr | @garylr | Jan 27 4:31pm
In reply to @myash "Hi and thanks for your comments. I’m starting so I really don’t have many symptoms yet...." + (show)
@myash

Hi and thanks for your comments. I’m starting so I really don’t have many symptoms yet. But let me ask you something. Have you been taking anything like viagra or sildenafil? I read it may not be safe. Thoughts?

Jump to this post

Hi,

Prior to starting treatments, I was taking a low dose (20 mg) of sildenafil "as needed" - or about twice a week. Since starting on Orgovyx, I've probably taken a sildenafil tablet three or four times and didn't notice any unusual reaction.

With my libido sitting right around zero, there hasn't been much need for the sildenafil. Last time my wife and I made love was in early October. I'm hoping things will start getting back to normal when I get off the Orgovyx in mid-March.

REPLY
1 reply
aiseman | @aiseman | Jan 27 4:16pm

2 yrs total, or 9 more months.

REPLY
ava11 | @ava11 | Jan 27 3:35pm
In reply to @aiseman "I've now been on Orgovyx for 15 months and I haven't experienced any of the side..." + (show)
@aiseman

I've now been on Orgovyx for 15 months and I haven't experienced any of the side affects I was concerned with.

One of my concern while on Orgovyx was weight gain and maintaining physical activity. It was a pleasant surprise that I didn't need to make much of an effort to keeping my weight down.

Jump to this post

How much longer you plan to be on Orgovyx?

REPLY
1 reply
myash | @myash | Jan 27 1:17pm
In reply to @garylr "I think there is a lot of variability from one person to the next. By one..." + (show)
@garylr

I think there is a lot of variability from one person to the next. By one week into my Orgovyx treatment (I'm about four months in now), my libido was gone, spontaneous erections were gone, and hot flashes had begun.

Issues with libido and erections persist. The hot flashes seem to come and go - I'll go for a week or two with no significant issues, and then (for example, about a week ago) I'll have a day or two with multiple hot flashes of the "sweat dripping down the back of my neck" variety.

I've gained between 15 and 20 pounds while on Orgovyx. Have tried to maintain an exercise routine, but it's winter here, and the Orgovyx and six weeks of EBRT have left me lazy as hell. Headed to warmer climes later this week and I hope to get back into daily exercise.

Only about seven weeks to go - looking forward to the Ides of March!

Jump to this post

Hi and thanks for your comments. I’m starting so I really don’t have many symptoms yet. But let me ask you something. Have you been taking anything like viagra or sildenafil? I read it may not be safe. Thoughts?

REPLY
1 reply
garylr | @garylr | Jan 27 8:49am
In reply to @myash "Hi, I just started my Orgovyx three days ago. Probably too early for any symptoms. I..." + (show)
@myash

Hi, I just started my Orgovyx three days ago. Probably too early for any symptoms. I as taking it in the morning but my times are too inconsistent so I am thinking about switching to late night. How long before I start getting symptoms? Thanks

Jump to this post

I think there is a lot of variability from one person to the next. By one week into my Orgovyx treatment (I'm about four months in now), my libido was gone, spontaneous erections were gone, and hot flashes had begun.

Issues with libido and erections persist. The hot flashes seem to come and go - I'll go for a week or two with no significant issues, and then (for example, about a week ago) I'll have a day or two with multiple hot flashes of the "sweat dripping down the back of my neck" variety.

I've gained between 15 and 20 pounds while on Orgovyx. Have tried to maintain an exercise routine, but it's winter here, and the Orgovyx and six weeks of EBRT have left me lazy as hell. Headed to warmer climes later this week and I hope to get back into daily exercise.

Only about seven weeks to go - looking forward to the Ides of March!

REPLY
1 reply
myash | @myash | Jan 26 2:40pm
In reply to @toolbelt "My first significant hot flashes were at Day 41. Please make sure to watch your calorie..." + (show)
@toolbelt

My first significant hot flashes were at Day 41.

Please make sure to watch your calorie intake, and exercise ....... a lot........especially weight bearing to keep muscle mass and bone health. I also took a Vit D/calcium supplement.

Stay Strong Brother, we got this.

Jump to this post

Thanks, that’s I’m 74 and am
fairly active. I’ll have work on the diet though. Take care!

REPLY
toolbelt | @toolbelt | Jan 26 1:26pm
In reply to @myash "Hi, I just started my Orgovyx three days ago. Probably too early for any symptoms. I..." + (show)
@myash

Hi, I just started my Orgovyx three days ago. Probably too early for any symptoms. I as taking it in the morning but my times are too inconsistent so I am thinking about switching to late night. How long before I start getting symptoms? Thanks

Jump to this post

My first significant hot flashes were at Day 41.

Please make sure to watch your calorie intake, and exercise ....... a lot........especially weight bearing to keep muscle mass and bone health. I also took a Vit D/calcium supplement.

Stay Strong Brother, we got this.

REPLY
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