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How has ADT affected your enthusiasm & motivation for life?

Posted by scary1 @scary1, Jul 6 7:10pm

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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chippydoo | @chippydoo | Jul 9 8:25pm

I had 25 sessions of EBRT radiation plus ADT. ADT wasn't horrible but I did ease up on physical activity intentionally lowering my heart rate during exercise and shortening my mountain bike trail riding milage. Emotionally flatter than normal. Everything seemed to require more mental effort to get going but was always rewarded by feeling better afterwards. I found that radiation side effects worsened over time and peaked for me around 12 months and sought additional medical assistance which has worked out well for me. It sounds like you are all in on this journey and couldn't be happier for the both of you.

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mjm8491 | @mjm8491 | Jul 10 3:46pm
In reply to @chippydoo "I felt somewhat Eeyore like as ADT wore on. I had to push myself to get..." + (show)
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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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@chippydoo
Such as?

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mjm8491 | @mjm8491 | Jul 10 3:49pm
In reply to @chippydoo "I had 25 sessions of EBRT radiation plus ADT. ADT wasn't horrible but I did ease..." + (show)
Profile picture for chippydoo @chippydoo

I had 25 sessions of EBRT radiation plus ADT. ADT wasn't horrible but I did ease up on physical activity intentionally lowering my heart rate during exercise and shortening my mountain bike trail riding milage. Emotionally flatter than normal. Everything seemed to require more mental effort to get going but was always rewarded by feeling better afterwards. I found that radiation side effects worsened over time and peaked for me around 12 months and sought additional medical assistance which has worked out well for me. It sounds like you are all in on this journey and couldn't be happier for the both of you.

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@chippydoo
What radiation side effects at 12 months out?

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chippydoo | @chippydoo | Jul 10 4:34pm
In reply to @mjm8491 "@chippydoo What radiation side effects at 12 months out?" + (show)
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@chippydoo
What radiation side effects at 12 months out?

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@mjm8491 Radiation Proctitis and Radiation Enteritis. Enteritis effects the colon and symptoms can be similar to Crohn's. If you get it, you will definitely know it. Both can be treated with various success.

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Jeff Marchi | @jeffmarc | Jul 10 5:23pm

I never answered your question. I’ve been on ADT for eight years. I don’t get any fatigue from it so the only problems are having to exercise with weights and having to be much more active than I used to be, walking a mile twice a day every day at high speed.

I think it’s made me a little bit easier to get along with. I don’t have any negative emotional issues, but I am a little bit calmer than I used to be, More easy-going. I am getting a lot older, 80 in a year+ Seems to make a difference. I definitely was ADHD When I was young and I’ve always been a little bit hyper.

I have not lost the enjoyment for life or the desire to do things. I want to do even more things now that I have my incontinent problem resolved. I want to start traveling soon. My wife wants to also. I think we’ve actually been closer since I started ADT even if it has ended some intimacy.

ADT can have an emotional effect on a lot of people. Over time it gets a lot easier to deal with, his attitude may change. The fatigue is one of the big problems. It really is the one factor I have seen cause problems with people being depressed. I was just in an online meeting yesterday and one of the regulars was talking about how it was really beginning to get to him. The fatigue from the drugs he was taking had just become depressing for the first time in his life. In his case he is on Zytiga which can make things much more difficult than ADT. I Told him to ask his doctor to increase the dosage of prednisone to resolve that fatigue issue. That makes a major difference for people on that drug.

You might have your husband ask to work with a palliative care doctor. They work with a patient to try to resolve the issues that come up with treatments they are on, he may be able to get an answer to fatigue.

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heavyphil | @heavyphil | Jul 11 7:11am
In reply to @jeffmarc "I never answered your question. I’ve been on ADT for eight years. I don’t get any..." + (show)
Profile picture for Jeff Marchi @jeffmarc

I never answered your question. I’ve been on ADT for eight years. I don’t get any fatigue from it so the only problems are having to exercise with weights and having to be much more active than I used to be, walking a mile twice a day every day at high speed.

I think it’s made me a little bit easier to get along with. I don’t have any negative emotional issues, but I am a little bit calmer than I used to be, More easy-going. I am getting a lot older, 80 in a year+ Seems to make a difference. I definitely was ADHD When I was young and I’ve always been a little bit hyper.

I have not lost the enjoyment for life or the desire to do things. I want to do even more things now that I have my incontinent problem resolved. I want to start traveling soon. My wife wants to also. I think we’ve actually been closer since I started ADT even if it has ended some intimacy.

ADT can have an emotional effect on a lot of people. Over time it gets a lot easier to deal with, his attitude may change. The fatigue is one of the big problems. It really is the one factor I have seen cause problems with people being depressed. I was just in an online meeting yesterday and one of the regulars was talking about how it was really beginning to get to him. The fatigue from the drugs he was taking had just become depressing for the first time in his life. In his case he is on Zytiga which can make things much more difficult than ADT. I Told him to ask his doctor to increase the dosage of prednisone to resolve that fatigue issue. That makes a major difference for people on that drug.

You might have your husband ask to work with a palliative care doctor. They work with a patient to try to resolve the issues that come up with treatments they are on, he may be able to get an answer to fatigue.

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@jeffmarc Ditto for me - ADT made me much calmer and took away the emotional “knee jerk” reaction.
I was happier and even my wife joked that maybe I could stay on Orgovyx forever!🤣
I know this is NOT the norm for most people and I am just grateful for that quirky side effect.
Phil

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ambika | @ambika | Jul 15 2:06am

ADT can certainly cause an underlying sadness because the patient is dealing with side-effects on a daily basis. Living with side-effects can be stressful and psychologically damaging. At the back of his mind the person is concerned about whether he will have a relapse at some point and how and when will I regain my previous self.
My husband (Gleason 9 localized prostate cancer) gets blood pressure spikes and lows almost everyday due to the interaction between Orgovyx and his Lisinopril 10 mg. Other than that he acts normal and loves emotional intimacy (I don’t mean sex) and he really likes to cuddle. He has somewhat put his hobbies on hold. He is an avid reader and loves to sing opera but ADT and radiation both has slowed him down. I really don’t think ADT changes personality but it is a constant stress on the body and it is hard to be your old self therefore. My husband is emotionally the same but I think he feels stuck and is accepting the fact that ADT will be part of his life for 2 years at least.
You said your husband takes Nubeqa and Orgovyx. My husband’s GU medical oncologist prescribed only Orgovyx though I have heard from some sources that the combination of Nubeqa and Orgovyx is more effective way to treat Gleason 9 cancer and prevent one from becoming castrate resistant.

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