Support for wives with the Orgovyx tornado: Needing an olive branch

@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.

Both 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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@brianjarvis

I had every side effect on your list plus painful migraine headaches, soaking sweats, and bone pain. I had to stop ADT (Lupron) after 4 months and it took 5 months of severe pain for the side effects to start to subside. Lupron would have killed me if I had continued. Now I read articles saying that ADT may not be effective for some types of Prostate cancer and might make it worse. New AI studies underway may better define when and if ADT should be used. It will be too late for me but hopefully there will be new and better methods for ADT use in the future.

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.

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.

ADT does usually stop the growth and/or spread of PC, but the mental, emotional and physical side effects are horrible. If you have bad side effects, your PSA has been “undetectable” and you have been on ADT for 18 months or more, talk to your doctor about intermittent ADT, ie going off ADT until your PSA rises. Remember that the longer you stay on ADT, the longer the side effects will remain after stopping.

@jimgaudette
I must disagree that the longer you are on ADT the longer it will take for your testosterone to come back.

I was on it for seven years when I stopped last year. My testosterone kept climbing and after seven months it hit 50 and was going up 25% a month. If the rise in testosterone was based on how long you’ve been on it, I should’ve waited years before it hit 50, And it shouldn’t have been rising at 25% a month. The first couple of months it went up 80% a month.

I have not found the side effects to be horrible after being on it for eight years now. I will admit I don’t like them, but they aren’t horrible. Nobody would guess I was on ADT if they met me

@jeffmarc We are all unique and react differently. per PubMed:
Factors influencing T recovery after ADT:
1. DURATION
Longer exposure suppresses the hypothalamic-pituitary-testicular acis more deeply. Median time to T recovery rises dramatically with treatment length and is not linear. Multiple studies conclude that ADT duration is the single most important variable affecting recovery.
2. AGE
3. BASELINE T
4. MEDICAL
COMORBIDITIES

When I was 69, I was on ADT for six months with very mild side effects. After three months off, my T was 400. Four and a half years ago I started ADT again with only mild side effects, but they became much worse after two years. The third year was horrible. I have been off ADT for 16 months and my last T (two months ago) was 100. My blood pressure, blood sugar and red blood count returned to normal right away, but the hot flashes, emotional lability, depression, tiredness, muscle and bone loss have remained. I am treating these with exercise and am somewhat successful, but the hot flashes and emotional lability remain.

@jeffmarc We are all unique and react differently. per PubMed:
Factors influencing T recovery after ADT:
1. DURATION
Longer exposure suppresses the hypothalamic-pituitary-testicular acis more deeply. Median time to T recovery rises dramatically with treatment length and is not linear. Multiple studies conclude that ADT duration is the single most important variable affecting recovery.
2. AGE
3. BASELINE T
4. MEDICAL
COMORBIDITIES

When I was 69, I was on ADT for six months with very mild side effects. After three months off, my T was 400. Four and a half years ago I started ADT again with only mild side effects, but they became much worse after two years. The third year was horrible. I have been off ADT for 16 months and my last T (two months ago) was 100. My blood pressure, blood sugar and red blood count returned to normal right away, but the hot flashes, emotional lability, depression, tiredness, muscle and bone loss have remained. I am treating these with exercise and am somewhat successful, but the hot flashes and emotional lability remain.