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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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lacraig1 | @lacraig1 | 10 hours ago
In reply to @jeffmarc "@lacraig1 You’re right I did not mention sleep as a problem, but so many people on..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@lacraig1
You’re right I did not mention sleep as a problem, but so many people on here Have complained about the fact that while they’re on ADT, they can’t get decent sleep. Very hard to get to sleep for some of those people.

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@jeffmarc falling asleep is easy it's the constant waking up that's troubling.

Often when I wake up, some of my body parts are all wired up, and I know I'm not going to fall asleep any time soon. So I go work on the computer or watch Netflix

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roseat | @roseat | 3 hours ago
In reply to @lacraig1 "@roseat I couldn't last 3 months on Lupron. He wanted 3 years. Your PSA is undetectable..." + (show)
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@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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@lacraig1 Have you seen a radiation oncologist or an Urologist for a first or second opinion? Have you had a PSMAPET/CT Scan? Since being on Lupron I now also take Rosuvastatin tablets.

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northoftheborder | @northoftheborder | 1 hour ago

The problem with Zytiga is that it's a first-gen ARSI that requires taking a steroid with it, and steroids themselves can cause or exacerbate side-effects for many people.

The second-gen ARSIs ("lutamides") do not require a steroid, have fewer side-effects for many people, and are somewhat more effective, but they're also *very* expensive (especially in the U.S.), so insurers probably try to steer doctors away from them.

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jime51 | @jime51 | 7 minutes ago
In reply to @jeffmarc "@lacraig1 Unfortunately, you didn’t clearly say that your testosterone was still near zero but it appears..." + (show)
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 My first blood work six weeks post treatment (18 months Orgovyx) showed PSA still <.01 but testosterone has risen from <10 to 48. Regretfully, I don't have pre-treatment testosterone number. I still have plenty of hot flashes but am starting to feel a bit more "normal."

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