How has ADT affected your enthusiasm & motivation for life?

Posted by scary1 @scary1, 21 hours 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 brianjarvis @brianjarvis

(I had two 3-month injections of Eligard; the Eligard stayed in my system a total of 9 months.)

When I was initially diagnosed with prostate cancer in 2012, my wife was quite upset. She said she “couldn’t bear the thought of cancer being in me.” But, I’m the more pragmatic, logical (retired computer scientist) type, and was able to show her (based on the data), that there really wasn’t anything to worry about, many treatments were available, and that I would carefully evaluate and analyze all aspects of this situation and make a decision that was best for us.

In that process, much of my time has been spent maintaining normalcy for her and myself, and insulating her from the continuous grind - physical and mental - of test-after-test-after-test. (That effort exhibited itself a few weeks ago when I mentioned to my wife about it being the 5th anniversary since the end of my 28 proton radiation treatments. She replied “yeah” and went back to watching her TV show.(!) That was an appropriate response, given my purposeful efforts to maintain normalcy in our relationship during this time.)

During my hormone therapy, I asked my wife if she had noticed any emotional changes in me: moodiness, crankiness, aggressiveness, anger, etc. She said that she hadn’t noticed any. (But, she did joke that I started watching too much Hallmark Channel on TV!)

This diagnosis did not adversely affect my passion, enthusiasm, and motivation for life in any way. In fact, it motivated me to be more active, eat more healthily, stay occupied, and continue with all I had been doing. (When I was diagnosed with prostate cancer, I had recently been elected vice mayor of my city; later I would be elected mayor. Nothing around me changed with my diagnosis.)

The things you’re expressing that he’s going through are all due to low testosterone. Think about your own menopausal years. What it took you years to get to and through, he was put fully into in a few weeks. “Male menopause” is what it’s called. He’s feeling 15 years older practically overnight; yes, that might cause him to be emotionally flat, less connected, shorter tennis sessions, indifference, apathy, patience, hot flashes, fatigue, ….feelings in general. (Again, think menopause.)

His feelings aren’t likely to improve until the ADT is out of his system and his T levels return.

However, there is a solution….

We often hear about the physical benefits of exercise to minimize the physical side-effects of hormone therapy. But, there are also mental health benefits as well —> Exercise turns on many types of switches in the parts of the brain that puts us in a better mood. It reduces stress, anxiety, depression, catastrophizing, and more.

A short video with Drs. Sholz and Moyad talking about exercise and hormone therapy: https://m.youtube.com/watch

Incorporating a resistance-training exercise program is a necessary part of the routine to minimize the potential physical/mental side-effects of hormone therapy.

It will improve the situation for him (and you).
========

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@brianjarvis well said, thanks

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When you write that your question is "not about libido", I'm not so sure. I believe libido is strongly related to "excitement about future plans, ambition, or simply enjoying everyday conversations and activities..." Among men, I think testosterone is about excitement of all kinds, sexual and otherwise, so those things are hard to separate. But separate them we must, somehow, in order to lead happy lives. In my own experience (short so far, but I can feel things coming) I try to put more effort into exercise, activities with friends, reading novels and nonfiction that are positive in outlook, and never-ending home projects (admittedly harder to get excited about, but there's always satisfaction in "gettin 'er done").

That's kind of a "solo" answer, seemingly not directly related to your query about relationships. But it is tightly related in the sense that those are things I have to work on for myself in order to be tolerable (at least) to my loving and supportive wife of 45 years. She knows and supports this work I have to do, and I try to give back as much as I can. That's really the main project here.

It's always work; as you write, things are often "off-kilter". Maybe think of it more as "new kilter" and trying to find some reward from this journey. It sounds to me like you're lucky to have each other, and you're going to be okay.

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I think what you need to know is that you are the most important thing in your husband‘s life. The cancer has taken a toll on him that you won’t ever know about. Most importantly he has you and your support. You should know that means everything to him. Even if he doesn’t say it, it’s important, incredibly important to him. He’s also questioning how this cancer will impact his life in two years, five years, 10 years. you’re both still young. Prostate cancer will always be in the back of his head, even though he won’t discuss it with you. Oh, it’s there. it never goes away. My wife is my anchor, like he is yours. For me only, I never, in my wildest dreams, thought at 67 I would be saying goodbye to intimacy the rest of my life but here I am. We still have plenty of fun. I’m restoring two old cars for my two kids. Everything between us is wonderful, but no, I never forget and it’s always in the back of my mind like it will be in his. Just stay close, always be there for each other and you’ll knock this thing out of the park. Best of luck to the both of you.

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Profile picture for xahnegrey40 @xahnegrey40

I am 74, single been on ADT for 1 yr. This is what it has done to me: I am not as confident, I am afraid to travel now..I dont have hardly any interst in sex-in fact I somehow feel betrayed by sex. I have gained 18 pounds ( some is muscle because I lift wts and work out more-I now weigh 235 when pre PC era I weight 215-220)...I dont necessarily feel sad but I do feel my life is on hold. I have hot flashes regulalry and dont sleep as well ---oh fatigue..lots of fatigue.....plus deep fear of recurrence and having to fight this for the rest of my life. Prostate cancer and all the treatment wounds psychologically and physically. But I carry on and grateful there are treatment options and now have a much more profound sympathy for people with cancer...I lost twin sister to cancer, Older sister and my dad..so I have seen it but now it ( cancer) is an intimate part of me. I have Gleason 8 N1..one more yr of ADt..and every 3 months PSA worry but so far I am <.02...otherwise doing ok.

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@xahnegrey40 oh and I have found myself looking at Prada and Vuitton hand bags and scarves ! and I am now wearing a very smart short v neck robe around the house some..which deeply concerns my cat Roscoe who said: " we arent gonna play Brokeback Mt around here cause if so..I am packing..!"

Testostrone is like an old friendd who took you to seedy bars down dark allys and sketchy surf breaks in mexico and encouraged you to drink and consort with tatted womens...but you still kinda like him and secretly cant wait to get back in the harness with him..!

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Profile picture for brianjarvis @brianjarvis

(I had two 3-month injections of Eligard; the Eligard stayed in my system a total of 9 months.)

When I was initially diagnosed with prostate cancer in 2012, my wife was quite upset. She said she “couldn’t bear the thought of cancer being in me.” But, I’m the more pragmatic, logical (retired computer scientist) type, and was able to show her (based on the data), that there really wasn’t anything to worry about, many treatments were available, and that I would carefully evaluate and analyze all aspects of this situation and make a decision that was best for us.

In that process, much of my time has been spent maintaining normalcy for her and myself, and insulating her from the continuous grind - physical and mental - of test-after-test-after-test. (That effort exhibited itself a few weeks ago when I mentioned to my wife about it being the 5th anniversary since the end of my 28 proton radiation treatments. She replied “yeah” and went back to watching her TV show.(!) That was an appropriate response, given my purposeful efforts to maintain normalcy in our relationship during this time.)

During my hormone therapy, I asked my wife if she had noticed any emotional changes in me: moodiness, crankiness, aggressiveness, anger, etc. She said that she hadn’t noticed any. (But, she did joke that I started watching too much Hallmark Channel on TV!)

This diagnosis did not adversely affect my passion, enthusiasm, and motivation for life in any way. In fact, it motivated me to be more active, eat more healthily, stay occupied, and continue with all I had been doing. (When I was diagnosed with prostate cancer, I had recently been elected vice mayor of my city; later I would be elected mayor. Nothing around me changed with my diagnosis.)

The things you’re expressing that he’s going through are all due to low testosterone. Think about your own menopausal years. What it took you years to get to and through, he was put fully into in a few weeks. “Male menopause” is what it’s called. He’s feeling 15 years older practically overnight; yes, that might cause him to be emotionally flat, less connected, shorter tennis sessions, indifference, apathy, patience, hot flashes, fatigue, ….feelings in general. (Again, think menopause.)

His feelings aren’t likely to improve until the ADT is out of his system and his T levels return.

However, there is a solution….

We often hear about the physical benefits of exercise to minimize the physical side-effects of hormone therapy. But, there are also mental health benefits as well —> Exercise turns on many types of switches in the parts of the brain that puts us in a better mood. It reduces stress, anxiety, depression, catastrophizing, and more.

A short video with Drs. Sholz and Moyad talking about exercise and hormone therapy: https://m.youtube.com/watch

Incorporating a resistance-training exercise program is a necessary part of the routine to minimize the potential physical/mental side-effects of hormone therapy.

It will improve the situation for him (and you).
========

Jump to this post

@brianjarvis "But, she did joke that I started watching too much Hallmark Channel on TV!"

Yeah, I did watch a lot of Hallmark movies on TV my first 3 years on ADT. My brain told me they were silly, but my heart found them strangely appealing. 🙂

Side note: many of them are actually filmed in Canada (mainly Ontario and BC), standing in for U.S. cities and small towns. Quite a few have scenes shot in walking distance of my house. I figure the year-round Christmas-ornament store in my neighbourhood probably stays in business supplying their set dressers (or else it's a drug front 🤷).

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Profile picture for xahnegrey40 @xahnegrey40

@xahnegrey40 oh and I have found myself looking at Prada and Vuitton hand bags and scarves ! and I am now wearing a very smart short v neck robe around the house some..which deeply concerns my cat Roscoe who said: " we arent gonna play Brokeback Mt around here cause if so..I am packing..!"

Testostrone is like an old friendd who took you to seedy bars down dark allys and sketchy surf breaks in mexico and encouraged you to drink and consort with tatted womens...but you still kinda like him and secretly cant wait to get back in the harness with him..!

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@xahnegrey40

Well - you now look and feel like "European" man LMAO , I would say - good for you 😉🥰 !!! ha ha Nothing wrong about feeling "fancy" and having high standards ; ) !

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Profile picture for surftohealth88 @surftohealth88

@xahnegrey40

Well - you now look and feel like "European" man LMAO , I would say - good for you 😉🥰 !!! ha ha Nothing wrong about feeling "fancy" and having high standards ; ) !

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@surftohealth88 Unfortunately for the people around me, ADT didn't improve my own clothing taste at all: it's still mainly t-shirts and cargo shorts in summer, jeans and old sweaters in winter.

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Profile picture for northoftheborder @northoftheborder

@surftohealth88 Unfortunately for the people around me, ADT didn't improve my own clothing taste at all: it's still mainly t-shirts and cargo shorts in summer, jeans and old sweaters in winter.

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@northoftheborder

Well - we don't know !!! 😉 Maybe you have fancy shorts and Diesel t-shirt now ! lol
Maybe it is Scotch & Soda cargo pants !??? ; ))) Perhaps Ferragamo sunglasses adorn your summer outfit ; ) ?

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Profile picture for northoftheborder @northoftheborder

I'm also 61. I've been on ADT for close to five years. Almost every morning I wake up excited to start another day (and grateful that I'm actually here to see it).

I had a lot of mood swings my first year on ADT, but then things stabilised. I'm definitely different since my 2021 stage 4 prostate cancer diagnosis, but at the core, I'm still me, and still deeply in love with my partner of 39 years, who had my back through some pretty difficult stuff.

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@northoftheborder
Thanks for the positive post and the reminder to feel gratitude. It's only been about three months, so I'm sure things will stabilize for us as well!

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Profile picture for surftohealth88 @surftohealth88

I am wife of high risk patient and my husband is on the same 2 drugs.

He is 70 years old and I did not notice any changes in him (so far, he is about 2 months on Orgovyx and about a month of Nubeqa). He does not even have hot flashes 🧿, &knock the wood. He still works full time and also has some "gigs" on the side and his job is keeping him very active and engaged. I did not notice any changes in energy level either and he is exercising every day too.

He does not like to think about cancer in general, so I think it is very helpful. I often ask him how is he doing and he always looks at me with surprise and says ; "I feel great - why ??? What did you read now ?" 😋 Like I maybe read something and am now checking if he is OK lol , he is so funny in that way lol.

Saying all of that, it is a well known fact that ADT effects mood and energy level and it can go from "no effect" to "major depression" effect and all levels in between. It seems that your husband is really very little effected , so little that only you can sense those subtle changes and maybe it could be of comfort to you 💗. Maybe the fact that he has aggressive cancer and that he has to deal with all this is effecting his mood more than ADT ? : ((( It is really much to deal with even without ADT : (((. I am not on ADT but I definitely changed since my husband was diagnosed 🥺. I am more subdued, have zero patience with people outside my immediate family, nothing is "like before" in my mind and my energy level is much less since so much energy goes to dealing with emotions of all kinds .

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@surftohealth88
Thank you for the wise words. I had stage 3 cancer in 2020, and we thought cancer was behind us when I was booted from my cancer center after five years. I'm carrying a dark cloud of worry that I know I need to shake. Some days I do, and then, like you, other days I feel deflated. I handle every medical detail - phone calls, driving to appointments, bills, and the black hole of research - while working full-time. My 84 year-old mother lives in an attached apartment with us, and she needs a lot of my attention. And we still have young adult sons living at home, so my cup feels full.
I hope your hubby continues to do well!

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