1. < Prostate Cancer

Resolution of Side Effects after Stopping ADT/Lupron

Posted by retireddoc @retireddoc, Jan 21 5:50am

Hello everyone. I am 70 years old and was diagnosed with PC about 2 and a half years ago, G9 with extra capsular extension but node negative on RP !0/21. Rising PSA post op with PSMA PET revealed solitary met T8 treated with SBRT. Again, rising PSA (rapid doubling time) with repeat PET revealed positive LN in pelvis. Sought systemic treatment at Johns Hopkins. Immediately started on ADT (3 month Lupron), Darolutamide and chemo with Taxotere. After second chemo treatment my PSA was undetectable and has thankfully remained so. My MO kept me on Lupron for one year so my last 3 month injection was July 2023.

I have experienced significant fatigue, hot flashes, loss of body hair (partly due to chem but hair head grew back, loss of libido, muscle loss and joint stiffness/soreness, depression and poor concentration and genital shrinkage as a the result of the Lupron. Pretty much the full monty.

My question to those that were on ADT and then taken off: how long before the symptoms improve or completely go away? I know it is dependent on return of testosterone and that is variable. My testosterone was in the 500s pre Lupron and my last blood draw (Dec 5, 2023-2 months after the 3 month Lupron should "quit working") my Testosterone was < 3. Fortunately the hot flashes are abating.

I read in the literature that it can take a year or more but is dependent on multiple factors. I have found the real life experience of those on this forum to be more helpful to me for questions like this.
Any help with specifics regarding the above side effects would be greatly appreciated.

Good luck to everyone on this journey!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

edmond1971 | @edmond1971 | Sep 6 4:30pm
In reply to @ecurb "The more important question is , when ADT side effects go away, will a rise in..." + (show)
@ecurb

The more important question is , when ADT side effects go away, will a rise in PSA occur soon? Let’s sing the song by Kenny Rodgers, The Gambler. Lol

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Whether biochemical recurrence prostate cancer returns after testosterone (T) levels starts to increase after finishing ADT treatment is a fair, reasonable and sometimes hard topic to review. My health team has indicated that with my confirmed BRCA2 gene mutation and the PSMA PET from October 2022 that had 25+ lymph nodes lit-up with a PSA of 19 before ADT treatment, that it is probable that the PSA may start to rise as the T rebounds, however the timing of such sequence of events is more of a mystery and less of a science.

In the world of self-education on the internet and the abundance of misinformation, I'm leaning into this next chapter with a mindset that healthy diet with exercise can be a differentiating factor. At the same time, if I had to resume ADT, I'd be so much more prepared as the side effects would not be brand new experiences and the multitude of coping mechanisms would be available rather than figuring it out.

hope this helps!

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2 replies
ecurb | @ecurb | Sep 6 5:57pm
In reply to @edmond1971 "Whether biochemical recurrence prostate cancer returns after testosterone (T) levels starts to increase after finishing ADT..." + (show)
@edmond1971

Whether biochemical recurrence prostate cancer returns after testosterone (T) levels starts to increase after finishing ADT treatment is a fair, reasonable and sometimes hard topic to review. My health team has indicated that with my confirmed BRCA2 gene mutation and the PSMA PET from October 2022 that had 25+ lymph nodes lit-up with a PSA of 19 before ADT treatment, that it is probable that the PSA may start to rise as the T rebounds, however the timing of such sequence of events is more of a mystery and less of a science.

In the world of self-education on the internet and the abundance of misinformation, I'm leaning into this next chapter with a mindset that healthy diet with exercise can be a differentiating factor. At the same time, if I had to resume ADT, I'd be so much more prepared as the side effects would not be brand new experiences and the multitude of coping mechanisms would be available rather than figuring it out.

hope this helps!

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100% in agreement with your analysis- more of a mystery than less of a science. BRAVO

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northoftheborder | @northoftheborder | Sep 7 10:35am
In reply to @edmond1971 "Whether biochemical recurrence prostate cancer returns after testosterone (T) levels starts to increase after finishing ADT..." + (show)
@edmond1971

Whether biochemical recurrence prostate cancer returns after testosterone (T) levels starts to increase after finishing ADT treatment is a fair, reasonable and sometimes hard topic to review. My health team has indicated that with my confirmed BRCA2 gene mutation and the PSMA PET from October 2022 that had 25+ lymph nodes lit-up with a PSA of 19 before ADT treatment, that it is probable that the PSA may start to rise as the T rebounds, however the timing of such sequence of events is more of a mystery and less of a science.

In the world of self-education on the internet and the abundance of misinformation, I'm leaning into this next chapter with a mindset that healthy diet with exercise can be a differentiating factor. At the same time, if I had to resume ADT, I'd be so much more prepared as the side effects would not be brand new experiences and the multitude of coping mechanisms would be available rather than figuring it out.

hope this helps!

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I think part of the problem is that we don't all have the same prostate cancer. Cancer isn't a contagious disease but rather millions and billions of malfunctioning cells reproducing out of control, and while cells in different parts of the body tend to all malfunction in similar ways (or else we wouldn't have all these great treatments available), my prostate cells probably didn't malfunction in exactly the same way that yours or anyone else's did.

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1 reply
edmond1971 | @edmond1971 | Sep 7 10:50am
In reply to @northoftheborder "I think part of the problem is that we don't all have the same prostate cancer...." + (show)
@northoftheborder

I think part of the problem is that we don't all have the same prostate cancer. Cancer isn't a contagious disease but rather millions and billions of malfunctioning cells reproducing out of control, and while cells in different parts of the body tend to all malfunction in similar ways (or else we wouldn't have all these great treatments available), my prostate cells probably didn't malfunction in exactly the same way that yours or anyone else's did.

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Agreed, and perhaps this is the most important point that all participants in this club need to digest completely.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 7 12:13pm
In reply to @solidwater "hi I( have been recently active in this group it was about 5 months ago there..." + (show)
@solidwater

hi I( have been recently active in this group it was about 5 months ago there was a discussion re lupron and the length of time radiation treatments linger. my id here is ' solidwater ' i wonder if there is any way for me to recover the information it was useful and included several Doctors including one Canadian

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@solidwater, as @budisnothome suggested, you can use the group search feature to find specific discussions. Another way to find a discussion in which you previously participated, is to click on your username to go to your profile and comments. That shows you all your comments and the discussion titles.

That's what I did and I think you might be referring to this discussion:
- Lupron Treatment Duration: How long were you on it? https://connect.mayoclinic.org/discussion/lupron-treatment-duration/

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