Resolution of Side Effects after Stopping ADT/Lupron

Posted by retireddoc @retireddoc, Jan 21, 2024

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.

@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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@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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@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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@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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@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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Been through most treatments for PC., RP radiation 2 times and ADT with Lupron 2 sessions including current one with Lupron going back 4 years. Quit the last one 2/18 due to horrible side effects much worse than my first session with "The beast (Lupron) which were also very bad. Question: how long will the Lupron stay in my system after that last shot 11/15/2024. PSA at 0.03 at last blood draw 2/18/2025 when I said enough! for another Lupron shot at the same time. If Lupron is still in my system my PSA should remain low 0.03? Right? So the question remains how long before PSA begins to creep up? Latest session with Lupron also included Abiraterone plus Prednisone. Should I continue with these? Appt with Psych oncologist 2/24/2025 hoping for relief from chronic insomnia HORRIBLE!! Need the good stuff as this is really very bad.
Thanks,
SW

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@laccoameno5

Been through most treatments for PC., RP radiation 2 times and ADT with Lupron 2 sessions including current one with Lupron going back 4 years. Quit the last one 2/18 due to horrible side effects much worse than my first session with "The beast (Lupron) which were also very bad. Question: how long will the Lupron stay in my system after that last shot 11/15/2024. PSA at 0.03 at last blood draw 2/18/2025 when I said enough! for another Lupron shot at the same time. If Lupron is still in my system my PSA should remain low 0.03? Right? So the question remains how long before PSA begins to creep up? Latest session with Lupron also included Abiraterone plus Prednisone. Should I continue with these? Appt with Psych oncologist 2/24/2025 hoping for relief from chronic insomnia HORRIBLE!! Need the good stuff as this is really very bad.
Thanks,
SW

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How long Lupron stays in your system depends on the dosage you were given, i.e. one month, 3 month or 6 month injection. When a Lupron injection is given it is slowly released into the blood stream. It has its effect directly on the pituitary gland and mimics a naturally occurring hormone to signal to the pituitary to stop production/release of 2 hormones-FSH and LH. LH is primarily responsible for telling the testicles to produce testosterone. As a result, the testosterone levels rapidly fall, temporarily stopping cancer growth and killing some cancer cells. Other than that, Lupron really has no other effects on the body and once in the bloodstream is rapidly broken down.

When men stop Lupron there is a variable length of time before (if) the LH released from the pituitary gland increases to tell the testicles to restart production of testosterone. When and if testosterone returns is dependent on 1) age 2) length of time on ADT/Lupron 3) pretreatment level of the man's testosterone.

Whether the PSA rises as the testosterone returns is variable. Some men see their PSA go up (indicating cancer growth) as the testosterone goes up and others don't.

I agree that ADT/Lupron can be a devastating drug although it is life saving. I had virtually all the bad side effects of Lupron. When the Lupron was discontinued by my MO (after 1 year) my PSA was undetectable and has remained so. After 18 months off Lupron my testosterone never recovered. My MP put me on TRT. The return of my testosterone has been life changing for me. Return of feeling of well being, energy, libido etc.

Good luck to you.

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I have had all the ADT symptoms you mentioned. However, I have not had the desire to return to my “old self”
that has a certain youthful vitality. Right now I am accepting of my situation and consider it the hand I was dealt by life. Some benefits are that I don’t feel frustrated or longing for the “good old days”. In addition, I am grateful for what I have rather than resentful for what I don’t have. I have no idea if that resonates with you and realize it doesn’t directly address your concerns. However, you did mention that you benefited from people sharing their life experiences. I hope I have done that in a faithful manner. I wish you all good things…

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@sicernon3

I have had all the ADT symptoms you mentioned. However, I have not had the desire to return to my “old self”
that has a certain youthful vitality. Right now I am accepting of my situation and consider it the hand I was dealt by life. Some benefits are that I don’t feel frustrated or longing for the “good old days”. In addition, I am grateful for what I have rather than resentful for what I don’t have. I have no idea if that resonates with you and realize it doesn’t directly address your concerns. However, you did mention that you benefited from people sharing their life experiences. I hope I have done that in a faithful manner. I wish you all good things…

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Sicetnon, thanks for your post. Now and then I feel I should start an ADT Fan Club of sorts. I'm in my 4th year of Eligard, and no, it's not all fun, but it's not all bad, either. I guess each person reacts differently.

I really don't want to go back to being so #$*@ *$@& horny all the time, getting distracted by any woman who passes by, like a dog fixed on a squirrel. I'm starting to feel at peace with my new sexuality (I now self-identify as "post-sexual"). And the ability to enjoy the Hallmark Channel is a bonus.

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@retireddoc

How long Lupron stays in your system depends on the dosage you were given, i.e. one month, 3 month or 6 month injection. When a Lupron injection is given it is slowly released into the blood stream. It has its effect directly on the pituitary gland and mimics a naturally occurring hormone to signal to the pituitary to stop production/release of 2 hormones-FSH and LH. LH is primarily responsible for telling the testicles to produce testosterone. As a result, the testosterone levels rapidly fall, temporarily stopping cancer growth and killing some cancer cells. Other than that, Lupron really has no other effects on the body and once in the bloodstream is rapidly broken down.

When men stop Lupron there is a variable length of time before (if) the LH released from the pituitary gland increases to tell the testicles to restart production of testosterone. When and if testosterone returns is dependent on 1) age 2) length of time on ADT/Lupron 3) pretreatment level of the man's testosterone.

Whether the PSA rises as the testosterone returns is variable. Some men see their PSA go up (indicating cancer growth) as the testosterone goes up and others don't.

I agree that ADT/Lupron can be a devastating drug although it is life saving. I had virtually all the bad side effects of Lupron. When the Lupron was discontinued by my MO (after 1 year) my PSA was undetectable and has remained so. After 18 months off Lupron my testosterone never recovered. My MP put me on TRT. The return of my testosterone has been life changing for me. Return of feeling of well being, energy, libido etc.

Good luck to you.

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Are you now waiting to see if HRT or stopping Lupron starts your naturally occuring testosterone to start producing and causes your PSA to rise again.. You sound as if TRT has worked in getting you to feel like your old self? Your natural production of testosterone "never recovered" in 18 months. GREAT! so far. Could it still recover even with TRT? For myself, my natural testosterone production started to cause my PSA to creep up again after quiting ist session of Lupron, Damn! That is why DR. started 2nd Lupron session which I quit after 3, 3 month shots due to horrible SEs I don't believe I could have made it through anywhere near 12 months of Lupron Again, HORRIBLE side effects.

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