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getting back to normal after ADT

Posted by lacraig1 @lacraig1, 2 days 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 | 9 hours ago
In reply to @jim18 "@lacraig1 Except for the research on fewer months of ADT being almost as effect as longer..." + (show)
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@lacraig1 Except for the research on fewer months of ADT being almost as effect as longer terms I am skeptical. So, I would shorten what was 12 months to 6 and what was 24 months to 12. The other item is that if you have run the course of your treatment and seem cured you can add testosterone (TRT) if it does not come back naturally a year or so after the ADT has ended. It can always be stopped if the cancer returns and at that point a person may be able to have effective ADT without any drugs due to the inability of producing testosterone.

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@jim18 thank you
I first posted because I want to see an endocrinologist. I stopped ADT after 3 months and the symptoms are as strong as ever after 8 months. I think it might be affecting my heart.

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corin | @corin | 6 hours ago
In reply to @jeffmarc "@corin Abiraterone It’s very hard on the heart. It gave me high blood pressure, Five afib..." + (show)
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@corin
Abiraterone It’s very hard on the heart. It gave me high blood pressure, Five afib Events and many hot flashes.

It is not appropriate at all for somebody with heart issues. I had not had an afib event for 15 years before starting Abbie. I’m getting an echocardiogram tomorrow and I know the reason I have to do it is because I was on that drug for 2 1/2 years.

Nubeqa Works really well all by itself most people. I know a lot of guys in their late 70s and 80s that are on Nubeqa Alone and they are doing quite well. It’s suppresses testosterone’s ability to work with the prostate cancer.

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@jeffmarc
As usual, thanks Jeff for your thoughtful and informative reply! I do wonder if all my heart issues were related to Abiraterone and not the change from Elligard to Orgovyx. Thanks for the Nubeqa suggestion.

I guess we'll see what my echocardiogram says. Good luck with yours! I wish you well and hope for a positive outcome.

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lacraig1 | @lacraig1 | 5 hours ago
In reply to @pesquallie "@lacraig1 Lupron does not cause the side effects directly but because it causes chemical castration of..." + (show)
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@lacraig1

Lupron does not cause the side effects directly but because it causes chemical castration of the tentacles, testosterone drops typically to single digit. Low testosterone actually causes the side effects. If you are older like me, 84, you may never recover from Lupron caused low testosterone (mine was 111 at 15-months after my last Lupron shot (4 months total). My urologist put me on TRT to raise my testosterone six weeks ago. Most of my side effects vanished within a week of Testosterone Replacement Treatment. In 6 more weeks, my blood will be tested for PSA and testosterone levels. My TRT will then be adjusted to get me to a normal testosterone level.

Numerous studies have shown that TRT is OK after radiation and ADT treatment because testosterone does not cause or feed cancer as once believed. I have not had a chance to discuss this with my doctor, but it now makes me wonder why ADTs are prescribed, now that we know that normal levels of testosterone do not increase the risks of cancer.

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@pesquallie my doctor didn't get the memo.

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