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Resolution of Side Effects after Stopping ADT/Lupron
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!
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My God, laco, doc, sicet and blue….your combined statements are blowing my mind!
Do we willfully take drugs to suppress our T, knowing the side effects will be horrible? That we may not even want to live being on them?
Or in some bizarre way are we happier that we are no longer salivating hound dogs fixated on the opposite sex? That we no longer feel the inexorable urge to log out from our workpage and log in to PornHub? Some marriages have been destroyed by this behavior.
What do we do if our PSA starts to rise after ADT? Or if it starts to rise while on TRT and we feel great? Do we really want to go back to feeling horrible just to live a few more years horribly? I don’t have any answers and you guys have given me even more questions to ponder.
ONE substance - and it’s not fentanyl, cocaine, radiation or toxic waste seems to be at the center of human history; its ability to shape tragic love affairs, jealousies, momentous decisions, adventures, inventions, genocides and wars is undeniable. I am talking about testosterone, that many faceted substance that gives us all things in life - both good and bad…
After 4 Lupron D injections over a year's time (Urologist wanted 18 month's worth), my PSA was 0.1 This month, 6 months after my last injection, it is .59. My testosterone level is still to be checked but in August it was 10! At least, the hot flashes are gone, and I am starting to feel some energy returning.
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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2 ReactionsFor me, testosterone is overrated.
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2 Reactionspsmick: Aren't "we" concerned when the PSA rises above 0.5?
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1 ReactionWhat I have read is 1. or 2. , but maybe I am naive. After starting with 14.6, 0.59 doesn't seem like a lot!
I started this thread about a year ago and wanted to post current follow up. My testosterone never recovered. The highest it got was 52 in 10/24. But my PSA has remained undetectable for >2 years off treatment.
My MO at Johns Hopkins recommended I begin TRT monitored by an endocrinologist. Long term testosterone deprivation has significant health risks. Of course, if the testosterone fuels prostate cancer that is certainly a health risk as well.
My MO treats each patient individually depending on their response to therapy. In my case, he believed the T would be a benefit and if the cancer did recur it could be managed.
I did not realize how the T deprivation had affected me until I had normal T levels for a month or so. It isn't so much about the return of the libido (although I do like that), but it is more the general over sense of well being. Improved mood. Depression gone. Energy level returning as is my muscle strength after 3 months. Body hair returning. There are physiologic changes to my body of which I am not aware but are documented (improved bone density, CV etc).
TRT isn't for everyone. As has been stated, the ADT effects are very tolerable for some people. I was not one of those. I feel like my old self again. To my complete surprise, I started having nocturnal erections again and haven't experienced those for years!
I very much appreciate reading all of the posts on this website. This is real life experience, not some doctor quickly relating the side effects he/she hasn't experienced. Or reading some dry journal article.
As always, good luck to everyone as they fight this disease.
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4 Reactions(sung to the tune of "Clouds" by Joni Mitchell)
"...I really don't know testosterone.... at all"
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2 ReactionsDoc, so glad you are feeling better; you’ve been through a lot with this disease so being on the upswing for a change is so different from feeling crappy all the time.
I’m sorry but I DO have to ask: if your PSA starts to rise will you discontinue TRT? Or worse, go back on ADT? I realize this is a very personal, gut wrenching decision and you yourself may not even want to go there right now.
But my query was really with you in mind. When we start this descent we really don’t know what we don’t know, right?
But after knowing (all the negatives of ADT), how do you go back after tasting such new joy in life? How does one go back to “THAT”?
My understanding from my MO is I am on TRT for life. 50/50 chance my PSA rises at some time. My MO says all of the aggressive clones have been killed with the triple therapy and radiation. If the cancer returns it will be more easily managed but I won't go back on Lupron.
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