Support for wives with the Orgovyx tornado: Needing an olive branch
This spring, my husband will have been taking Orgovyx for 2 years. He was diagnosed a few months after a forced retirement, we sold our beautiful lake home to move closer to kids (a few states down), living in RV during our house build. (a few stressers)
We rented a furnished apartment close to the proton center for the treatments. We highly recommend proton! That had minimal side effects. The house was done a day before Thanksgiving and on Dec. 3 he needed colon surgery. The medical stuff for him has calmed down now BUT, the orgovyx. Lord, help us!
He is a completely different person. Easily angered, moody, depressed, has a give-up attitude. UGGGG
Has anyone had longer term orgovyx usage and can offer a positive outcome?
I'm absolutely exhausted, loosing hope. Any support groups for wives?
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A number of people have mental issues while on ADT. The solution really is to see a psychiatrist so you can get a prescription for a drug that will relieve the depression and change the mood. People in this forum have said that being on one of the below drugs has changed their life completely and just made everything easier. Not each drug works for everyone, but one of the drugs that’s available today works to really change the mood.
Common drugs for depression and anxiety
Wellbutrin, Zoloft, Effexor, Buspirone, Cymbalta, Lexipro, Prozac, Celexa, Paxil
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10 ReactionsHere's the general Mayo support group for caregivers:
https://connect.mayoclinic.org/group/caregivers/
In terms of hope, I'm 4½ years on ADT (first Firmagon, then Orgovyx) and Apalutamide. For the first year, I got a little weepy and tired easily, but I was also dealing with a lot (including 3½ months in hospital, paraplegia, and a then-supposedly "terminal" stage-4 diagnosis).
Once I regained some mobility and got used to the ADT, my mood stabilised and I've been pretty-much myself again since late 2022, except for less body hair, larger … um … "pecs", and occasional hot flushes.
We all get affected differently, though.
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8 ReactionsBoth the physical and mental side-effects of androgen deprivation therapy (ADT) are quite well known. His doctor should have discussed this with him (& you) well before starting.
To be blunt, he’s been forced into menopause. (They call this “male menopause.”) What women progressively experience over a number of years, he’s been forced into over a number of weeks/months.
Many men experience these side-effects to varying degrees — some more, some less —> anger, depression, mood swings, emotions, forgetfulness, confusion, memory loss, fatigue, loss of libido, ED, insomnia, hot flashes, night sweats, muscle atrophy, loss of strength, weight gain, and more….
Right now, his testosterone levels are lower than yours. The hormone that gave him all of his male characteristics are pretty much gone. For as long as his testosterone levels are being suppressed by the ADT, these side-effects will continue at some level.
How I got through this - based on my medical oncologist’s advice - was through resistance-training exercises.
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There has been much reported on the physical benefits of resistance-training exercise while on ADT. Here are just a few that I’ve bookmarked:
> Drs. Sholz and Moyad talking about exercise and hormone therapy: https://m.youtube.com/watch
Mental health benefits of exercise while on ADT: https://m.youtube.com/watch
Side-effects of ADT: https://m.youtube.com/watch
> A paper on The Benefits of Exercise During Hormone Therapy: https://static1.squarespace.com/static/54c68ac6e4b06d2e36a4b8c9/t/55cb7275e4b0d97ae7ff60af/1439396469154/The+Benefits+of+Exercise+During+Hormone+Therapy_Insights+August+2015_PCRI.pdf
> A study about the benefits of exercise to counteract the adverse effects of ADT: (They describe a good resistance-training program): https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx
Resistance-training
> https://pcri.org/sky-2/2017/9/19/fitness-and-longevity-rylt4
If he do what it takes, he’ll do very well while on hormone therapy - it’ll just be an annoyance; if he doesn’t do anything, hormone therapy can be his (& your) worst nightmare.
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8 ReactionsSo sorry he is having these issues; but a long stretch on ADT can do this.
I was only on Orgovyx for 6 months, but it actually had the reverse effect: I was less angry, kinder and didn’t let politics and world events get me going. I even stopped screaming at the TV!
My wife asked my RO if I could stay on it forever😂…but on a more serious note, some men do require counseling and/or medication since ADT has a tremendous impact on mood - both good or bad.
Phil
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2 ReactionsI was only on ADT for six months but the mental symptoms, fatigue (including a "why bother about anything" attitude) and brain fog were the most pronounced things that happened to me. The physical stuff I dealt with by exercise. I was put on Wellbutrin which helped a lot. It gave me energy almost immediately and, about four weeks later, greatly improved my mood. It wasn't a total panacea--still had moments of grief and sadness but they were manageable. I stayed on the max dose for three months after stopping ADT and then was dropped to lower doses over the next six months before stopping.
Some guys in my support group said that Effexor really helped them with both mental side effects and hot flashes but that it's a hard drug to stop.
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4 ReactionsI’ve been on ADT, Lupron, since December of 2024 and I have 10 months left. The mental side effects are real and can be difficult to handle especially when in my case, I thought it was my wife causing all the issues, not me. We got couples counseling and I was put on Celexa. After a couple weeks, my eyes opened and I saw I had been the problem the whole time. Couples therapy stopped but I continued with counseling for several months. Once I realized I couldn’t go back 100% to my ‘old self’ prior to cancer but I could bring a lot of it forward to my new normal I have been much happier and less depressed and anxious. I do think I will be on Celexa for the foreseeable future though. Good luck to you. Many men, and I was one of them, think we can power through on our own. I couldn’t. I don’t think the medical profession keys in as much as it should on the mental aspect of a life changing illness, whatever it may be.
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6 ReactionsMy husband finished 2 years of ADT in September (RP IN 2023 followed by adjuvant radiation and ADT - Eligard and Abiraterone). He has been on an emotional roller coaster dealing with the diagnosis, a post-op pathology report worse than expected, and side effects of treatment and readjustment to increasing testosterone as well as anxiety about the next PSA results. He does see a therapist and a psychiatrist for meds and continues to work at this. I also saw a psychologist which helped me immensely. Taking time for self-care has allowed me to be more present and supportive in the long run. Please take care.
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10 Reactions@jeffmarc
My experience and my wife's are that some of these drugs made mental issues worse and they came with side effects. Everyone is different and these meds should be taken with a lot of caution and only with qualified medical care. Many personal doctors lack the proper training and experience to prescribe mind altering drugs.
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2 ReactionsI've been on Orgovyx and zytiga for 22 months. Been taking zoloft to help with moods but not really helping. Anyone have experience with Wellbutrin?
Same boat, different captain! My husband is not the same as before and I’m trying to get it through my head that he has semi-permanent PMS. The first 6 month Lupron injection didn’t cause the mood swings but the second one, in December has been a roller coaster ride. He also take’s Nubeqa. I’m so thankful that his psa is way down, and I was blessed with a patience gene, plus a daily meditation so I try to understand. My heart breaks for him because he’s never been prone to emotions. These suggestions are so helpful to me and I’m going to encourage him to keep on moving forward.
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