Anyone have a hard time getting back to normal after ADT?

Posted by lacraig1 @lacraig1, Aug 15 1:54am

I had 3 shots of Lupron and one pill of abiraterone acetate (general Zytiga) to suppress my testosterone. I stopped this, because it was simply too disruptive. Last shot was early December 2025. I still have this disruption. I don't sleep well. I keep waking up, feeling like my hormones are racing around in my body Nap often. I feel lousy much of the day. I'm thinking it's affecting my heart. Want to see an endocrinologist. Anybody else having/had a hard time getting back to normal?

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Profile picture for narus @narus

@pesquallie I never had a testosterone test before Lupron treatment. I am on TRT and my tests come back usually about 700 but my sex drive is not what it was before prostate cancer

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@narus
It was hard to get an erection, but it wasn’t hard enough. Is this just a mental issue or is the physical causing some of the psych problems? You are a year older and an 84. I can’t go away a little if you don’t use it..

For some people, the sexual drive is the type of thing that you use it or you lose it. For other people taking a break from it for a year or more wouldn’t make a difference. Maybe 84 the first choice happens. If you force yourself to do it a few times, your desire for more probably will come back.

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Profile picture for Jeff Marchi @jeffmarc

@pesquallie
I know of lots of people that have had either full recovery or significant recovery after you being on ADT. Yes, if you are older, it can be more difficult. I’m 78 and have no major problems with Lupron. In my case, at 77, I stopped taking ADT and in eight months my PSA rose to 50, Going up 25% a month at that point. That was after being on ADT for seven years. I did have to go back on ADT because of my aggressive case. I don’t think it’s slowed me down at all.

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@jeffmarc Eight months to still be at castrate level (50) may be okay for metastatic patients who expect to be on ADT for life but will not inspire confidence for someone contemplating a 6-month ADT course if it will take 16 months or more to recover. Testosterone increases tend to plateau so it is unlikely that a low (300) testosterone level would be achieved in another 8 months (25% per month). Anyone over 75 should know the long-term risk of Lupron if taken for short term (vs permanent) ADT, especially since Orgovyx is as good with a better recovery profile. Even with Orgovyx the risk of poor and slow recovery is higher over 75 than at younger ages. Doctors tend to minimize this risk.

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Profile picture for utahgearhead @utahgearhead

@narus hello. It will be 6 months on Halloween since my 6 month Lupron shot. I completed 5 SBRT a month ago. I’ll get a PSA & testosterone test mid November & my RO late November.

After experiencing ADT, I’ll never (I know brave words now) go on ADT again. I plan to ask my RO to prescribe testosterone but I anticipate he will say “not yet”. I’ve read enough to be danderous.

I will not allow up to another 6 months to regain testosterone levels somewhere near normal for my age of 76. At this point TIME & its quality is more on my mind than longevity (ADT based). I don’t trust my thoughts, ache all the time, night sweats, brain fog(damage😂) I’m scared of bone and muscle loss. Only thing I know works is regular weight lifting heavy weights with less reps.

My long winded question to you is what would you suggest I look into regarding getting on testosterone supplement?

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@utahgearhead I think you should talk with your Urologist first and see what they say. At the end of the day it is your choice and if they will not prescribe it you can go to an online clinic that will after blood work.

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Profile picture for chippydoo @chippydoo

@narus 90 for a 3 month is surprising. Is your PSA back to undetectable?

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@chippydoo Yes $90 for three months is a good deal. Amazon price is like $40/month without insurance. I am not sure my PSA was ever undetectable but it is back below .1. It briefly went up to like .22.

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Profile picture for Jeff Marchi @jeffmarc

@narus
It was hard to get an erection, but it wasn’t hard enough. Is this just a mental issue or is the physical causing some of the psych problems? You are a year older and an 84. I can’t go away a little if you don’t use it..

For some people, the sexual drive is the type of thing that you use it or you lose it. For other people taking a break from it for a year or more wouldn’t make a difference. Maybe 84 the first choice happens. If you force yourself to do it a few times, your desire for more probably will come back.

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@jeffmarc If I had someone willing and attractive to do it with my desire would probably come back. Before prostate cancer I was probably a creepy old man, now I am in a good place. I control my disire it does not control me.

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Profile picture for pesquallie @pesquallie

@narus

My testosterone only recovered to 111 at 12 months after 4 months of Lupron treatment. I was given only 5 mg/2 weeks starting 8 weeks ago. Within a week my Lupron side effects went away, and I had several soft erections, but after 6 weeks all arousals went away possibly because I got Covid. Covid is now over so I will see if arousals start again. I will be testosterone tested again in 4 weeks to see if dosage needs changing.

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@pesquallie I am happy my sex drive and desire came back. If I was in a sexual relation I would probably would also be taking Viagra My sex drive is not my main reason for taking testosterone it was more energy and muscle tone

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I was on ADT and abitaterone for 2.5 years. I am now in remission. That doesn t mean normal. It's been 2 yrs and I had to reset normal to something less than old normal. Good luck

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Profile picture for narus @narus

@jeffmarc If I had someone willing and attractive to do it with my desire would probably come back. Before prostate cancer I was probably a creepy old man, now I am in a good place. I control my disire it does not control me.

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@narus
One of the doctors that moderates an Advance prostate cancer meeting said almost exactly what you’re saying. He’s no longer a horn dog and it’s great for his marriage. For some people ADT makes life Changing attitudes that benefit the person and Those around him. If only we didn’t have the damn side effects that go along with it.

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Profile picture for jim18 @jim18

@jeffmarc Eight months to still be at castrate level (50) may be okay for metastatic patients who expect to be on ADT for life but will not inspire confidence for someone contemplating a 6-month ADT course if it will take 16 months or more to recover. Testosterone increases tend to plateau so it is unlikely that a low (300) testosterone level would be achieved in another 8 months (25% per month). Anyone over 75 should know the long-term risk of Lupron if taken for short term (vs permanent) ADT, especially since Orgovyx is as good with a better recovery profile. Even with Orgovyx the risk of poor and slow recovery is higher over 75 than at younger ages. Doctors tend to minimize this risk.

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@jim18
The difference is in my case I was on ADT for six years when I tried this. At the age of 77 neither I nor my oncologist figured my testosterone would come back at all.

Somebody that has a short term of ADT, Like the six months you refer to, We’ll have testosterone come back in the low hundreds within six months and at 16 months will be pretty much normal. If they take Orgovyx it will come back even quicker.

My brother is a perfect example. He was put on 6 months of Lupron at 77 for his radiation treatments. After about nine months, most of the side effects were gone and at a little over a year they were gone completely. This is an older person whose testosterone recovered within a reasonable amount of time. It does happen.

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Profile picture for narus @narus

@utahgearhead I think you should talk with your Urologist first and see what they say. At the end of the day it is your choice and if they will not prescribe it you can go to an online clinic that will after blood work.

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@narus thanks I planned on doing so before any action. Based on your detailed knowledge I was just looking for suggestions.

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