getting back to normal after ADT

Posted by lacraig1 @lacraig1, 1 day ago

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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I had nearly three years of ADT by way of Lupron injections. The good news is that has so far brought my PSA to undetectable levels but resulted in poor sleep, loss of libido, erectile disfunction, and hot flashes.
I joined a gym and when possible walk rather than drive.

REPLY

You indicated that your last shot was in December 2025.
> Was that a 1-, 3-, 4-, or 6-month shot?
> How many total months were you on Lupron?
> What was your baseline testosterone level?
> What is your testosterone level now?
> What is your PSA level now?
> Did you begin a robust resistance-training exercise program well before starting Lupron?

All those will help answer what to expect next.

(Zytiga is given when there is high-risk disease; stopping it early - for whatever reason - is not usually a good idea.)

REPLY
Profile picture for brianjarvis @brianjarvis

You indicated that your last shot was in December 2025.
> Was that a 1-, 3-, 4-, or 6-month shot?
> How many total months were you on Lupron?
> What was your baseline testosterone level?
> What is your testosterone level now?
> What is your PSA level now?
> Did you begin a robust resistance-training exercise program well before starting Lupron?

All those will help answer what to expect next.

(Zytiga is given when there is high-risk disease; stopping it early - for whatever reason - is not usually a good idea.)

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@brianjarvis 1) I got 3 shote of Lupron, one a month
2) 3
3) essentially zero after the e months
4) around 65 now
5) PSA is zero
6) I have worked out with weights most of my life. Lately not so much, because I feel sleep deprived
They did a genetic test and determined my cancer was aggressive. Gleeson score was 7.
They did a molecular recently. Not a regular thing with prostate cancer. No evidence of disease.

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Profile picture for roseat @roseat

I had nearly three years of ADT by way of Lupron injections. The good news is that has so far brought my PSA to undetectable levels but resulted in poor sleep, loss of libido, erectile disfunction, and hot flashes.
I joined a gym and when possible walk rather than drive.

Jump to this post

@roseat I couldn't last 3 months on Lupron. He wanted 3 years. Your PSA is undetectable because you are on Lupron. Once you are off, it's a new ball game. My poor sleep is affecting my health. Possibly my heart. I have ED too, but I can achieve an orgasm in about a minute. I have hot flashes and all around lousiness.

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Profile picture for lacraig1 @lacraig1

@brianjarvis 1) I got 3 shote of Lupron, one a month
2) 3
3) essentially zero after the e months
4) around 65 now
5) PSA is zero
6) I have worked out with weights most of my life. Lately not so much, because I feel sleep deprived
They did a genetic test and determined my cancer was aggressive. Gleeson score was 7.
They did a molecular recently. Not a regular thing with prostate cancer. No evidence of disease.

Jump to this post

@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.

REPLY
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.

Jump to this post

@jeffmarc
My testosterone was even in my question.
it has creeped up to the mid-60s. I am 77.
I was on ADT for 3 months and am approaching this 10 month marker.
My concern is these symptoms plus lack of good sleep are affecting my heart and overall health.
I want to see an endocrinologist.

REPLY

I’m not sure what you mean by “ My testosterone was even in my question.” Is it possible you meant to say it is not in your question?.

The thing is testosterone is what is causing the problem? Once you get your testosterone up the fatigue and other side effects from ADT usually go away.

Mid 60s is way too low, but it may continue to increase and normally it does. The problem is that at your age it usually does come back slower. When I quit at 77 it took eight months for mine to hit 50, though I had been on it for seven years the time.

Get your testosterone level, checked regularly. If it doesn’t rise significantly within the next six months, then you can get testosterone replacement therapy.

REPLY
Profile picture for lacraig1 @lacraig1

@jeffmarc
My testosterone was even in my question.
it has creeped up to the mid-60s. I am 77.
I was on ADT for 3 months and am approaching this 10 month marker.
My concern is these symptoms plus lack of good sleep are affecting my heart and overall health.
I want to see an endocrinologist.

Jump to this post

@lacraig1

I was 82 when I started Lupron during 44 radiation treatments. It almost killed me and I had to stop at 4 months. My testosterone only recovered to 122 and continued to fall to 111 over the next year. My horrible side effects continued night and day. Three weeks ago, my urologist put me on a low dose of testosterone and most of my side effects stopped within the first week. Six months earlier he had absolutely refused to give me TRT but after reading about the latest studies showing that increasing testosterone does not promote cancer, he was adamant that I raise my testosterone. I am giving myself shots but there are creams and patches that are also effective. It is beginning to look like testosterone does not support prostate cancer and I wonder if the shots of Lupron that I got may have been harmful.

REPLY
Profile picture for pesquallie @pesquallie

@lacraig1

I was 82 when I started Lupron during 44 radiation treatments. It almost killed me and I had to stop at 4 months. My testosterone only recovered to 122 and continued to fall to 111 over the next year. My horrible side effects continued night and day. Three weeks ago, my urologist put me on a low dose of testosterone and most of my side effects stopped within the first week. Six months earlier he had absolutely refused to give me TRT but after reading about the latest studies showing that increasing testosterone does not promote cancer, he was adamant that I raise my testosterone. I am giving myself shots but there are creams and patches that are also effective. It is beginning to look like testosterone does not support prostate cancer and I wonder if the shots of Lupron that I got may have been harmful.

Jump to this post

What are the studies that show that increasing testosterone doesn't promote cancer? Forgive me if this subject has been covered here before - I am a newbie.

REPLY
Profile picture for Jeff Marchi @jeffmarc

I’m not sure what you mean by “ My testosterone was even in my question.” Is it possible you meant to say it is not in your question?.

The thing is testosterone is what is causing the problem? Once you get your testosterone up the fatigue and other side effects from ADT usually go away.

Mid 60s is way too low, but it may continue to increase and normally it does. The problem is that at your age it usually does come back slower. When I quit at 77 it took eight months for mine to hit 50, though I had been on it for seven years the time.

Get your testosterone level, checked regularly. If it doesn’t rise significantly within the next six months, then you can get testosterone replacement therapy.

Jump to this post

@jeffmarc thank you yes, testosterone wasn't even in my question.

Is a lack of testosterone the cause of all this discomfort? I don't know, and I am starting to think that this is affecting my heart. And certainly not getting good sleep isn't good

I want to see an endocrinologist. It doesn't seem anyone else has

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