Anyone have a hard time getting back to normal after ADT?

Posted by lacraig1 @lacraig1, Aug 15 1:54am

I had 3 shots of Lupron and one pill of abiraterone acetate (general Zytiga) to suppress my testosterone. I stopped this, because it was simply too disruptive. Last shot was early December 2025. I still have this disruption. I don't sleep well. I keep waking up, feeling like my hormones are racing around in my body Nap often. I feel lousy much of the day. I'm thinking it's affecting my heart. Want to see an endocrinologist. Anybody else having/had a hard time getting back to normal?

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Profile picture for Jeff Marchi @jeffmarc

@lacraig1

Unfortunately, you didn’t clearly say that your testosterone was still near zero but it appears that that’s what you meant. You also don’t mention your age with she’s a major factor and testosterone coming back.

After being on it for six months, it took my brother over a year before his hot flashes completely stopped and his testosterone came close to 200..

Here is some information from PCa Commentary about testosterone returning

Examples of the relationship of the duration of ADT exposure to subsequent recovery to their
original T levels after stopping ADT are as follows:
- After 3 - 9 months of ADT nearly all men fully recover by about 10 months;
- After 18 - 24 months of ADT only 60% fully recover by about 3 years; and
- After 36 months of ADT exposure only 50% fully recover by ~ 5 years.
It is clear that after receiving ADT for longer than 6-9 months many men never fully return to their
T baseline. This raises the very important question of whether it is safe to offer replacement
testosterone in symptomatic men who have been rendered persistently hypogonadal (<230
ng/dL).

If your testosterone is not returning after a year, you could get testosterone replacement therapy through injections. It has been shown in recent trials that it does not cause the PSA to rise. That can get you back to feeling normal again. Something to discuss with your doctor.

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@jeffmarc heb 17 maanden orgovyx gebruikt vanwege 12,5 psa en gleasonscore 9 ,graad 5 en na dat ik daarmee gestopt.werd voorgeschreven om dit 2 jaar te doen, bestraling 28 stuks beiendigd 16 julii 2025 en ook hormoontherape ben had ik na 2 maanden weer een orgasme , wel droog , logisch ook maar wel lekker, Ben ik nu een uiitzondering? de behandelings methode heb ik wel zelf uitgezocht, het is tenslotte wel mijn lichaam, waar ik zolang als ik nog nuchter van geest ben, zelf over beslis

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It took 18 months to recover after six months of ADT for my testosterone to cross back into the low normal range. I'm going to be 65. Mood improved first, then orgasms came back and then, after 18 months, I *finally* got a testosterone test in the normal range though still considerably below my pre-treatment T.

I REALLY wish I'd been informed of this beforehand as I just assumed it was like any other drug and wore off relatively soon after stopping it. All the side effects have gone away now except osteoporosis, which is permanent. I'm finally able to sleep through the night without medication which seems to have helped everything else.

The worst side effect for me is that I now have a belly despite really watching what I eat and working out six days a week. It's as if my entire body has been "reconfigured."

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Profile picture for vircet @vircet

@vircet I had practically none of the Orgivyx side effects. I had erections while on Orgovyx, and even now with low T (considered castrate level). I think there are cases that don't go by the books?

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@vircet Denk toch wel dat jij een uitzonderlijk geval bent. Even guiness book of records contracteren.

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Profile picture for oesjipapa @oesjipapa

@jeffmarc heb 17 maanden orgovyx gebruikt vanwege 12,5 psa en gleasonscore 9 ,graad 5 en na dat ik daarmee gestopt.werd voorgeschreven om dit 2 jaar te doen, bestraling 28 stuks beiendigd 16 julii 2025 en ook hormoontherape ben had ik na 2 maanden weer een orgasme , wel droog , logisch ook maar wel lekker, Ben ik nu een uiitzondering? de behandelings methode heb ik wel zelf uitgezocht, het is tenslotte wel mijn lichaam, waar ik zolang als ik nog nuchter van geest ben, zelf over beslis

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@oesjipapa
You said, translated
“ Have used Orgovyx for 17 months because of a 12.5 PSA and Gleason score 9, grade 5, and after I stopped with that. It was prescribed to do this for 2 years, finished 28 radiation sessions on July 16, 2025, and also hormone therapy. After 2 months I had an orgasm again, dry of course, which makes sense, but it felt good. Am I an exception now? I did choose the treatment method myself, after all it is my body, which I decide on myself for as long as I am of sound mind”

Many men are fully functioning after just having radiation. Yes, ADT does make things more difficult but once you are off of it, things start to work properly again. Congratulations on picking Orgovyx, You recover your testosterone much quicker on it. It sounds like you did..

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Has your T recovered? In addition to your urologist have you had your primary following up with blood work? Around here Endo's are extremely hard to get an appointment with. It seems GLP's are their primary business these days. I've noticed a few guys Urology practice are providing TRT replacement which is kind of new. Have you talked to yours? After 16 months mine is still below 200 and will talk to my provider about TRT next visit.

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My oncologist says that T studies have not been done with aggressive cancer. He doesn't want me to have TRT. I'm seeing an endo Monday. About a month and a half wait. I took myself off ADT after 3 months. Nine months later, my sleep is still abysmal and I get frequent 'episodes.'

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Profile picture for lacraig1 @lacraig1

My oncologist says that T studies have not been done with aggressive cancer. He doesn't want me to have TRT. I'm seeing an endo Monday. About a month and a half wait. I took myself off ADT after 3 months. Nine months later, my sleep is still abysmal and I get frequent 'episodes.'

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@lacraig1
What is it that makes your sleep abysmal? Is it that you wake up a lot or you can’t get to sleep?

I’ve been on ADT for nine years and never had that problem. Sometimes I wake up once or twice at night, but I go right back to sleep, a lot of the time I just sleep right through. I just would like to understand more about why people can’t sleep.

The first couple of years on ADT, when I was having hot flashes and hot sweats at night, that would wake me up. But I have a device that stops those, and they are seldom problem anymore, after 9 years on it.

Have you tried adding melatonin to your evening, drugs?

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I was on Lupron for three months and a year after stopping it my testosterone was only 100. The reason I explored testosterone was I was having trouble walking after prostate cancer. They called it abnormal gait and I did three months of physical therapy and a brain MRI with no results.
After my first dose my walking went back to normal and my sex drive came back a little although nothing compared to what it was before PC. My PSA came up a little after I started treatment but came down to under .1 after a couple of months. My urologist was not a fan at first bust since my psa keeps going down he can't complain. Other things have also improved and my bladder control is much better

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I fall asleep quickly and then I'll wake up in a few hours. Sometimes I have to get out of bed to reset. But after that, I wake up constantly, often with pain. Sometimes I'll go right back to sleep, other times it's constant movement and somewhere I catch some sleep
I was on ADT (Lupron) 3 months. Third month he added Zytiga (Abiraterone Acetate). One pill, the two together, and I said no more. That was 9 months ago.
You have a device? I'm happy for you. Tell my doctor about it. He should know. I will not do this again.

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Profile picture for narus @narus

I was on Lupron for three months and a year after stopping it my testosterone was only 100. The reason I explored testosterone was I was having trouble walking after prostate cancer. They called it abnormal gait and I did three months of physical therapy and a brain MRI with no results.
After my first dose my walking went back to normal and my sex drive came back a little although nothing compared to what it was before PC. My PSA came up a little after I started treatment but came down to under .1 after a couple of months. My urologist was not a fan at first bust since my psa keeps going down he can't complain. Other things have also improved and my bladder control is much better

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@narus The question my oncologist will want to know id: how aggressive was your cancer? What was your Gleason score? According to him, TRT was not tested on aggressive cancers.

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