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Orgovyx done. What to expect?

Posted by miked77 @miked77, Apr 15 10:48am

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

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mikejf | @mikejf | Apr 23 5:27pm
In reply to @michaelcharles "Orgovyx SEs took 3 - 4 mos to wear off substantially for me. 8 mos off..." + (show)
@michaelcharles

Orgovyx SEs took 3 - 4 mos to wear off substantially for me. 8 mos off med, my Testosterone returned to 80% of pretreatment level.
I took 4/5 mos of Orgovyx during my salvage radiation tx last year.
I think that the journey is similar for all; and different for everyone.
Best wishes.

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Just curious were you diagnosed with Advanced Prostate Cancer because i am on ORGOVYX with APC and its prescribed forever. No off time

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miked77 | @miked77 | Apr 23 10:02pm

I was 77 yo when diagnosed with Gleason 8 and 9 so the protocol was to get 35 radiation treatments and 18 months of ADT (Orgovyx). Being a pharmacist, I dislike long-acting injectables like Lupron. The drug levels go up and down so I wanted to take a pill daily so I would get a steady-state of drugs in my system. Probably not important but the reasoning worked with the insurance company and they approved it.

Good luck with your treatment. Let me know why you are on ADT forever--not heard of this.
Mike

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waynebarry | @waynebarry | May 4 11:32am

Has anyone completed orgovyx therapy? Satisfied? Side effects? Cost?

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | May 4 11:45am
In reply to @waynebarry "Has anyone completed orgovyx therapy? Satisfied? Side effects? Cost?" + (show)
@waynebarry

Has anyone completed orgovyx therapy? Satisfied? Side effects? Cost?

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@waynebarry, I think you'll appreciate the conversations here:
- Orgovyx done. What to expect?
https://connect.mayoclinic.org/discussion/orgovyx-done-what-to-expect/
- What's your experience with Orgovyx (relugolix)?
https://connect.mayoclinic.org/discussion/the-orgovyx-thread/
Also see these related discussions: https://connect.mayoclinic.org/group/prostate-cancer/?search=ORGOVYX#discussion-listview

Have you completed treatment with Orgovyx or about to start?

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toolbelt | @toolbelt | May 4 12:33pm
In reply to @waynebarry "Has anyone completed orgovyx therapy? Satisfied? Side effects? Cost?" + (show)
@waynebarry

Has anyone completed orgovyx therapy? Satisfied? Side effects? Cost?

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I WILL finish my 6 months in 24 days. It has been an easy ride. No weight gain, no muscle loss....but I am at the gym 6 days a week and walking 18 holes 2 days a week. Only a couple minor hot flashes at night. No apparent mental fog or mood swings. With my Part D it costs about $3000 for the 6 months. I am totally satisfied at this point. Going for a testosterone test 1 month after I stop. It will be interesting to see the results. I was 571 before treatment and 14 during treatment.
Oh...the other thing of course is that I thought my radiation oncologist said I would be "unique"....once I saw the written notes it was "eunuch".((Actually I made that story up))

Stay Strong Brother

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1 reply
stevecando54 | @stevecando54 | May 4 5:32pm
In reply to @toolbelt "I WILL finish my 6 months in 24 days. It has been an easy ride. No..." + (show)
@toolbelt

I WILL finish my 6 months in 24 days. It has been an easy ride. No weight gain, no muscle loss....but I am at the gym 6 days a week and walking 18 holes 2 days a week. Only a couple minor hot flashes at night. No apparent mental fog or mood swings. With my Part D it costs about $3000 for the 6 months. I am totally satisfied at this point. Going for a testosterone test 1 month after I stop. It will be interesting to see the results. I was 571 before treatment and 14 during treatment.
Oh...the other thing of course is that I thought my radiation oncologist said I would be "unique"....once I saw the written notes it was "eunuch".((Actually I made that story up))

Stay Strong Brother

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toolbelt, we all need a laugh, thank you for giving me one. good luck on your journey

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1 reply
toolbelt | @toolbelt | May 4 6:17pm
In reply to @stevecando54 "toolbelt, we all need a laugh, thank you for giving me one. good luck on your..." + (show)
@stevecando54

toolbelt, we all need a laugh, thank you for giving me one. good luck on your journey

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We got this Brother

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golferdto | @golferdto | Oct 25 5:24pm
In reply to @budzikg "Was on orgovyx for 1 year and now have been off for about 2 months. My..." + (show)
@budzikg

Was on orgovyx for 1 year and now have been off for about 2 months. My libido is still zero with no sign of improvement. Still having hot flashes. Haven’t had an erection in over a year and I think my penis has shrunk to about one half its original size. I am almost 75, so I did not expect much but this situation is rather depressing. My oncologist told me it could be as much as 6 mos. To recover from side effects.

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I am 75 and have the same issue. I was on orgovyx for 13 months plus 45 radiation treatments. My T level at start was 410 and two years after ending the treatment my T level is at 123 and seems to be stagnant. No good erections and size seems to have decreased. Doctors don’t seem to have an answer as orgovyx was approved in December 2020 and I started treatment in March 2021. Very few side effects when it was first approved but has lots of them now.

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