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Orgovyx and the timeline for return of normal testosterone level

Posted by rmp321 @rmp321, Dec 19, 2023

I’ve been taking Orgovyx since 11.09.23. How long does it take for Testosterone levels to return to normal once I stop taking this drug? What side effects have you experienced with this drug?

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bheller | @bheller | Jul 8 2:41pm
In reply to @maverick75 "I stopped a 6 month course in Jan of this year. First labs last week, T..." + (show)
@maverick75

I stopped a 6 month course in Jan of this year. First labs last week, T back to normal levels. PSA was undetectable following SBRT Tx last year. Good luck!

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Wonderful and encouraging news. I had the same treatment regimen with SBRT and Orgovyx. I Stopped the Orgovyx on June 30. How long before you felt the hot flashes were significantly decreased? Same for fatigue? Also, I have felt cold most of the time while on the ADT, I assumed it was related, did you have that as well?

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ava11 | @ava11 | Oct 1 4:54pm

wzm,
Are you stopping after 6 months of Orgovyx? I just finished 6 months on being Orgovyx. I also went through SBRT 5 sessions at UCLA. I have an appointment with my Medical Oncologist next week. I will ask him if I can stop taking Orgovyx and what is the risk of getting cancer back.

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kujhawk1978 | @kujhawk1978 | Oct 2 7:57am

I have posted on this before...

I did 12 months of Orgovyx from April 2023 to April 2024.

Side effects were the usual:

Fatigue
Muscle and joint stiffness
Hot flashes
Weight gain
Genitalia shrinkage

I did not experience loss of libido.

Three months after coming off it T was 300+.

I have labs next week, we'll see what the T and PSA are at six months.

The side effects were annoying but not life altering. I still went to the gym, rode my bike with my sister in the Garmin Unbound, a 50+ mile gravel bike ride in the Flint Hills of Kansas, skid with friends in Colorado, took vacations to Iceland and Oregon with my wife.

Kevin
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heavyphil | @heavyphil | Oct 3 8:24am
In reply to @ajpernsteiner "I took orgovyx for 18 months, am off it 5 weeks. I just had testosterone tested,..." + (show)
@ajpernsteiner

I took orgovyx for 18 months, am off it 5 weeks. I just had testosterone tested, it is 505. I had some fatigue, some pain in knees and hands. I did lose some muscle mass. Libido lessned but did not disappear. I followed a diet program and an exercise program. 5 weeks off and I have increased libido and night time erections back. I was G10, state 3C 18 months of orgovyx and 45 radiation.

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Wow - that’s an amazing T recovery - and after 18 months even more so. Hope you continue to make strides in your recovery.

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seasuite | @seasuite | Oct 3 8:34am

I'm told recovery depends on a number of factors including age. I'm 72; ended 4 months of Orgovyx in January; T has been slowly, much slower than I expected, creeping up and is now 250. I still have hot flashes; moderate ED and extra belly fat. I met with a member of my medical team yesterday who said, 'more exercise" and when I said that I'm doing 30 minutes per day, she said "do more" and more diet control...ugh! She does not believe that I'm candidate for T supplement and that it would increase risk of growing cancer cells. My PSA is undetectable so the T issue is the price for that wonderful news.

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robertmizek | @robertmizek | Oct 3 5:22pm
In reply to @ajpernsteiner "I took orgovyx for 18 months, am off it 5 weeks. I just had testosterone tested,..." + (show)
@ajpernsteiner

I took orgovyx for 18 months, am off it 5 weeks. I just had testosterone tested, it is 505. I had some fatigue, some pain in knees and hands. I did lose some muscle mass. Libido lessned but did not disappear. I followed a diet program and an exercise program. 5 weeks off and I have increased libido and night time erections back. I was G10, state 3C 18 months of orgovyx and 45 radiation.

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I just read your post from April. I’ve been on ORGOVYX for almost 6 months and have another 18 months to go. I am a Gleason nine stage three patient with one locally affected lymph node. I had RP in January 2024 and seven weeks of radiation ending in July. I’m pushing hard to stop ADT at 18 months just like you.
I’m encouraged that only five weeks after discontinuing ADT you’re starting to feel better and ED is improving. I’m absolutely thrilled for you that your nighttime erections came back. My wife can’t understand how I feel but my God I miss those!
It’s now about six months after you made the post. How are you doing?
Any progress with muscle mass returning? Also, ED improving?

I’m hoping That you can share more positive news to help me soldier on for however longit takes.

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1 reply
ajpernsteiner | @ajpernsteiner | Oct 3 7:23pm
In reply to @robertmizek "I just read your post from April. I’ve been on ORGOVYX for almost 6 months and..." + (show)
@robertmizek

I just read your post from April. I’ve been on ORGOVYX for almost 6 months and have another 18 months to go. I am a Gleason nine stage three patient with one locally affected lymph node. I had RP in January 2024 and seven weeks of radiation ending in July. I’m pushing hard to stop ADT at 18 months just like you.
I’m encouraged that only five weeks after discontinuing ADT you’re starting to feel better and ED is improving. I’m absolutely thrilled for you that your nighttime erections came back. My wife can’t understand how I feel but my God I miss those!
It’s now about six months after you made the post. How are you doing?
Any progress with muscle mass returning? Also, ED improving?

I’m hoping That you can share more positive news to help me soldier on for however longit takes.

Jump to this post

I was a gleason 10 stage 3c. I did(or my wife did) go on added protein drinks, and collagen 3 times a day. I buy the best whey protein made, took it through 45 radiation treatments and still taking it. Rarely have red meat, no processed meat. I have always drank a lot of milk, and still do. Added the gym every other day. My legs and arms are strong and pretty much back to normal. I have been off the ADT now for 7 months, ED is definitely less and less, night time more and more frequent, and I agree, it is good to feel those again. Had lost all my body hair (except head) and that is back. Chest, arms legs. No side effects any more. I just had a blood draw this week and will find out the new numbers on PSA and T. Hope the PSA is staying in check. The other blood work was great. I will let you know the numbers on PSA and T when I get them.

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1 reply
robertmizek | @robertmizek | Oct 3 9:15pm
In reply to @ajpernsteiner "I was a gleason 10 stage 3c. I did(or my wife did) go on added protein..." + (show)
@ajpernsteiner

I was a gleason 10 stage 3c. I did(or my wife did) go on added protein drinks, and collagen 3 times a day. I buy the best whey protein made, took it through 45 radiation treatments and still taking it. Rarely have red meat, no processed meat. I have always drank a lot of milk, and still do. Added the gym every other day. My legs and arms are strong and pretty much back to normal. I have been off the ADT now for 7 months, ED is definitely less and less, night time more and more frequent, and I agree, it is good to feel those again. Had lost all my body hair (except head) and that is back. Chest, arms legs. No side effects any more. I just had a blood draw this week and will find out the new numbers on PSA and T. Hope the PSA is staying in check. The other blood work was great. I will let you know the numbers on PSA and T when I get them.

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That’s awesome on all counts. Good for you. You give me hope!

Looking forward to hearing more good news!

Bob

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brownsf | @brownsf | Oct 4 11:54am

I had a RP at UCSF in 2008. My Gleason was 4+4 at the time. For a while, my PSA was undetectable but it started creeping up very slowly. Last year, it reached 0.2. I took Orgovyx for 6 months and had 37 radiation treatments to the prostate bed. It's been about 14 months since I completed those treatments. My PSA has been undetectable but my Testosterone is remaining around 180 which is low. The main symptom I notice is lack of energy and tiring easily. I have discussed T replacement with my doctors and they strongly advise against it saying the risks outweigh any benefits. I ams very pleased with Orgovyx because of the PSA results and the side effects were minimal (other than my T not bouncing back)...I would do it again. But I'd like to see my T increase. I am 79 and my Oncologist, who I really like, advises that, because of my age, low T may just be my new normal. Has anyone tried T replacement therapy and what was your experience...increase in T? Side effects? Increase in PSA?

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1 reply
farmanerd | @farmanerd | Oct 4 12:46pm
In reply to @brownsf "I had a RP at UCSF in 2008. My Gleason was 4+4 at the time. For..." + (show)
@brownsf

I had a RP at UCSF in 2008. My Gleason was 4+4 at the time. For a while, my PSA was undetectable but it started creeping up very slowly. Last year, it reached 0.2. I took Orgovyx for 6 months and had 37 radiation treatments to the prostate bed. It's been about 14 months since I completed those treatments. My PSA has been undetectable but my Testosterone is remaining around 180 which is low. The main symptom I notice is lack of energy and tiring easily. I have discussed T replacement with my doctors and they strongly advise against it saying the risks outweigh any benefits. I ams very pleased with Orgovyx because of the PSA results and the side effects were minimal (other than my T not bouncing back)...I would do it again. But I'd like to see my T increase. I am 79 and my Oncologist, who I really like, advises that, because of my age, low T may just be my new normal. Has anyone tried T replacement therapy and what was your experience...increase in T? Side effects? Increase in PSA?

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What was your T immediately before starting Orgovyx?

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