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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.

retireddoc | @retireddoc | 20 hours ago
In reply to @laccoameno5 "Are you now waiting to see if HRT or stopping Lupron starts your naturally occuring testosterone..." + (show)
@laccoameno5

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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Once you begin TRT it is for life. Your body will not produce its own T while getting T from gel or injection. I could have waited another 6 months or more but it was fairly apparent that my testicles were permanently moth balled and on strike.

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scottbeammeup | @scottbeammeup | 19 hours ago
In reply to @laccoameno5 "So true about the effects of ADT, Lupron and others. Most will feel crappy and hopeless...." + (show)
@laccoameno5

So true about the effects of ADT, Lupron and others. Most will feel crappy and hopeless. "So this is it?"Yes I am alive but what a high cost! ADT drugs can ruin any shread of a positive attude attempt. I heard that one of the past members of my local support group blew his brains out. Could not tolerate the HORRORS of Lupron any longer. The HORRORS of Lupron yet again rears its ugly head.

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Lupron REALLY did a number on my mental health. The best way I can describe it is that I felt like I was a soulless husk just walking around observing myself rather than living. Orgovyx was better but by no means ideal.

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