How has ADT affected your enthusiasm & motivation for life?

Posted by scary1 @scary1, 2 days ago

My 61 year old husband (I'm 55) has been on ADT - Nubeqa and Orgovyx - for over three months and will likely take both for two years for high-risk prostate cancer (Gleason 9, cribriform, visibly contained within the prostate per scans), and I'm trying to better understand what other couples have experienced.
For those of you who have been on ADT, how has it affected your passion, enthusiasm, and motivation for life? My question isn’t about libido, but more about hobbies, excitement about future plans, ambition, or simply enjoying everyday conversations and activities.
Did you feel emotionally flat and less connected with loved ones and life? If so, did those feelings improve over time or after ADT ended?
My husband and I are a team for life; we still play (shorter) tennis sessions (we’ve played together for 30 years). We still laugh, but I sense an indifference and apathy that I’ve never experienced before. He's also less patient. Of course, this is to be expected, but I guess I’m asking: how did you feel differently toward your significant other? Clearly, testosterone is there for a reason, hence all the “low T” ads.
My husband says other than hot flashes and fatigue, he feels almost normal, but I see a difference. I don't want to make this about me, and I know this medical journey won't fracture us, but it’s also hard feeling our relationship off-kilter.
Thank you.

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Profile picture for rbtsch1951 @rbtsch1951

Approaching age 75 and now 10 months into a planned 15 months ADT (3 months on Lupron followed by Orgovyx), I feel like a hollowed out shell of the man I was. The fatigue and hot flashes are constant reminders of the medication, and the generalized weakness and musculoskeletal pain make me feel like I have aged 10 years over the last 10 months. The negative impact on my libido (which is null at this point) and associated ED (it seems hardly worth the effort to engage in intimacy with my younger spouse) leave us both struggling to maintain the closeness we once shared. I am counting the days until ADT is considered completed, praying that my cancer remains controlled even after the meds are stopped, and hoping that my sexuality is restored, the weight I’ve gained melts away with continued exercise (I am doing Zumba, Pilates, cycling) and my breasts recede to their former size/shape. Ugh. Prostate cancer sucks in spite of the fact that it can be so well treated!

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@rbtsch1951
It sounds as though you are doing everything right. You only have five months to go, so look ahead with optimism! Wishing you the best outcomes.

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Profile picture for pesquallie @pesquallie

@rbtsch1951

At age 83 I had to stop Lupron after just 4 months, or I thought I would die because the pain was so intense for 24 hours/day. It got even worse after stopping Lupron and only began to get better after about 14 months. Severe headaches, aching bones and muscles, muscle cramps, and of course the hot and cold flashes. Undetectable PSA but my testosterone has only recovered to 125. No libido or erections. I get checked again next week and would like to find out if there is a way to raise my testosterone to end the side effects.

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@pesquallie
That seems to be the "knife tip" that we all dance on: we want to regain our virility and sexual capabilities...which takes testosterone...but testosterone is the enemy that sees PSA start to increase again because any remaining post-prostatectomy cancerous prostate cells, start making that PSA in the presence of testosterone. What to do? What to do? Damned if we do, damned if we don't.
I am well aware of - and have written - that we are the "unlucky ones"...that subset of prostate cancer patients who have had unexpected or expected bad outcomes. The "lucky ones" who had successful surgery by competent urologists who did not leave any cancerous prostate tissue behind in our bodies. It is hard to keep that in perspective: only 10% of post-prostatectomy men had "surgical margins" reported in their surgical pathology report, meaning they had obviously Extraprostatic Extension (EPE), and therefore the surgical margins that saw the urologist leave cancerous tissue in your body, which is now our journey to endure.
Imagine that...nearly all of us on this blog are the unlucky 10%. The guys with Gleason 3 + 3 = 6, prostate membrane-contained cancer, successful removal with successful preservation of the neurovascular bundles that allow for sexual activity without issue, are not on this blog. They don't need to be. We all must endure the reality of the fact that physicians truly do "practice" medicine. None of them have perfected it. They write-off our life-altering bad prognostic status as "bad luck." They go home or shoot a round of golf after their work day, and we sit and wait for the bad news, wondering when it will land.
I have thought no less than weekly for the last 14 months since my prostatectomy, that I should have done like my father who lived to 99 years, 10 months "WITH" prostate cancer. His last five years were bad with monthly UTI's and other issues, but he lived 95 years without problems and with that cancer that likely started in his late '60's. My maternal grandfather lived to 96 "WITH" prostate cancer. He got a shot (Cipro???) straight into the prostate every month for 20 years. He died of Alzheimer's - the 'ole: "You'll likely die of something else before your prostate cancer kills you." It is all hindsight now, but I ask myself "why" I allowed my urologist to do the surgery when I could have had a few more years before it got really bad. I was diagnosed with a bad pT3b because I had slight left seminal vesicle invasion (no tumor or nodules, just cells). Well...I just paused asking myself "why" I am writing this? Again, it is all hindsight...I can't change a thing. My life is now lived in 6-month increments with lots of thought and worry about what my "next" PSA value will be. So far it has been great, but my urologist said that in his experience, he sees about 33% of his post-prostatectomy pT3b patients end up with recurrence (BCR) "within" five years post-surgery. I hope I will be one of the 66% that does not have BCR.

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I just had my 3rd year after ringing bell and only revived 3 shot of ADT, 2 eligard and 1 firmagon and I’m still fighting and battling the side effects. Overall, I’m doing well and I keep fighting, the biggest effect I have is that my testosterone refuses to come back up into the normal range. The other effects while annoying are manageable. I feel that some issues I have now have come from the ADT. But saying and proving are two different things.

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Profile picture for pesquallie @pesquallie

@madisonman0326

It seems that you have escaped the horrible side effects that I got from only 4-months of Lupron. At 15 months since my last 3-month shot I am just beginning to feel pain at a level I can bear. I wish you well and you need to pay more attention to your wife who has suffered as much as you have from the cancer.

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@pesquallie Agreed. She has supported me through this journey in the best way she knows how and I nearly lost her over a frivolous flirtation. I need to do better.

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I felt somewhat Eeyore like as ADT wore on. I had to push myself to get out of my chair to exercise and usually felt better for a few hours afterwards. My biggest challenges were post radiation problems.

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Profile picture for jimbo12 @jimbo12

1. I have NO enthusiasm.
2. I am 89.
3. I quit Lupron (after only two shots) in 2022.
4. I STILL have not regained enough strength to even walk safely
around the block.
5. I realize it's my age.
6. After reading about how many of you are suffering, I have NO self-pity.

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@jimbo12

I had the same experience with terribly painful headaches, muscles, and bones plus severe hot and cold sweating 24 hours/day. In my case it was clearly the Lupron caused low testosterone that after 15 months has only recovered to 125. My side effects did not start to subside until after 14 months. Next week I get PSA and testosterone rechecked but to date my PSA has been less than 0.03. There is growing research studies that indicate that ADT treatment only helps a small percentage of men but almost everyone has to suffer the side effects.

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