What happens when you come off ADT

User

Posted 25 Apr 2015 at 18:46

I have been on ADT for 2 years as part of the Radicals trial and had my final dose of Prostap in February. I Finished RT about 20 months ago and LRP 28 months ago. My PS is currently <0.01 (thou' I am having my next blood test next week)

I have been trying to find out what to expect as my testosterone comes back over the next 6 months or so. Has anyone experienced this?

I know that if the ADT was the cause of the my undetectable PSA then it will start to rise again and I will be back on the ADT but I assuming that won't be the case http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif and I will be off ADT permanently (or at least for a good many years!)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif.

So what am I likely to see:

Will my T2 diabetes disappear (it only appeared after starting ADT)? A low carb diet and Metformin keeps it well under control anyway so maybe I wont be able to tell.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Will my testes grow backhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif? They are not much bigger than baked beans at the moment

Will I lose weight? I put on a lot after starting ADT but lost a lot of it after starting the low carb diet and abstinence from all alcohol 15 months ago

Will I get some of my muscularity back?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif (My forearms are now really skinny!)

What else might I experience? - Mood swings, Depression, Elation, Better mental agilityhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif?

Thanks

Batholith

User

Posted 26 Apr 2015 at 09:30

No idea mate :)

But just wanted to wish you all the best with the blood test next week

Bri

User

Posted 26 Apr 2015 at 21:49

I'm ok thanks Andy. .hope someone can offer you some answers to your queries

Bri

User

Posted 27 Apr 2015 at 09:59

Hi Andy, generally they say that most side effects wear off once you stop taking the hormones but that it can take as long as you were on them. If your side effects developed very quickly then many on here have found that they also disappear quickly. If they took a long time to develop then they hang around for a long time.

You should certainly find that your testicles start to regain some substance. The emotional feelings and desire to go shopping will probably wear off quite quickly. If your libido had gone, you may start to get sexy thoughts again after a while - I think often within the year. It should be possible to get some muscle back but that will require exercise :-)

I don't know about the diabetes.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Apr 2015 at 19:05

Hello Andy,

I can only report what has happened to me, and I'm not sure if it is representative... but here goes.

Started ADT June 2011. RT in October-Dec 2011. Stayed on ADT until January 2014. (2 and a half years in all). It took all that time for my PSA to reach less than 0.1.

PSA stayed at "less than 0.1" until January 2015, and it is now 0.1. That's the good news!

I put on about 15lbs in weight over the time on ADT, nearly all on my Moobs, Stomach and "love handles". My arms and legs got thinner. I experienced all the usual ADT side effects, but fortunately as I have always eaten little sugar, I stayed clear of Diabetes. I had no energy, and stopped nearly all exercise. I hoped everything would return to "normal" in a few months when I stopped ADT: but it was not to be!

In Autumn 2014, I started to try to exercise a little more, but was so breathless, I ended up with chest pains. My libido remained at zero, and I had no erections. Over Christmas, I decided I needed to take matters into my own hands, so started dieting and exercising. I was walking a few miles most days, and the chest pains started to go. I went on a low carb, low calorie diet. As my diet is dairy free already, and also no red meat, it was a challenge. However now, 3 months later, I have lost all the extra weight, and I should have more energy. Unfortunately the chest pain was diagnosed as Angina, and as I had a ruptured peptic ulcer in January 2014 that required emergency surgery, I couldn't have a stent fitted as the blood thinking drugs were too risky, so I am now on Statins, Beta-blocker, Blood pressure pills for the heart problems and Omeprizole for the ulcer......so have no energy as the beta-blockers restrict my heart rate down to about 60, and blood pressure under 100/70.

I still have no libido: In January my Oncologist said that it would take at least as long as I was on ADT for it to return, and there is a reasonable chance it never will! However, I do have a better body shape and I am not so emotional, so something has improved! I have not regained any body hair either.

I guess I have accepted that this is now the future, and if it does improve, it is a bonus. Sorry not to bear good news, and I hope your experience turns out much better. I guess I have realised it will not get better by itself, just because I am off ADT. I need to take action to improve how I feel.

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User

Posted 26 Apr 2015 at 09:30

No idea mate :)

But just wanted to wish you all the best with the blood test next week

Bri

User

Posted 26 Apr 2015 at 10:49

Thanks Brian
How are you getting on?

I haven't been able to find much on the web.
I will ask my oncologist on Saturday 9th May - yes Saturday!

Maybe I will have a second adolescence! (hope not - I was a lazy so & so!) :)
Cheers
Andy

User

Posted 26 Apr 2015 at 21:49

I'm ok thanks Andy. .hope someone can offer you some answers to your queries

Bri

User

Posted 26 Apr 2015 at 22:15

Good glad to hear it Bri.

I have have done quite a bit of searching but haven't found much, there is lots on what happens when you go on ADT.

I guess one thing is that those guys who do go off ADT long term will be the ones who have had it as an adjuvant to RT and if they are staying off it then perhaps they are on the way to remission and maybe they don't frequent this site very much?

Paid a quick visit to the dark side for the first time today! Perhaps I will post the question there.

I will let the forum know how the blood test goes.

And if I do stay off the ADT perhaps I will chronicle what happens, might be useful to someone.

Cheers and all the best to everyone

Andyhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

User

Posted 27 Apr 2015 at 09:59

I don't know about the diabetes.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Apr 2015 at 19:05

Hello Andy,

I can only report what has happened to me, and I'm not sure if it is representative... but here goes.

Started ADT June 2011. RT in October-Dec 2011. Stayed on ADT until January 2014. (2 and a half years in all). It took all that time for my PSA to reach less than 0.1.

PSA stayed at "less than 0.1" until January 2015, and it is now 0.1. That's the good news!

User

Posted 27 Apr 2015 at 21:04

Thanks Lynn,

My libido disappeared after about 4 months, I retain a vague interest in the female form but that is about it. But despite the odd drip and total ED (maybe the lack of libido was a good thing?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif) life is good, I have a new and interesting role at work, much closer to home and I am still here! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif

Thanks Pierre

That is an interesting picture. Sorry to read about all your issues, sounds like you got dealt a worse hand than me and I hope it all improves for you. I still get a bit tired but I put that down to the ADT and hope it will go as my hormones get back to normal, I don't think there are any underlying reasons for it my pulse sits at 65-70 resting and my BP is either side of 120/80.

Good luck everyone

Andy

User

Posted 28 Apr 2015 at 14:06

Andy

My experience for what's its worth to you

All times are circa:

Energy to recover, 12 months for notable improvement then a couple of more to get back to something like.

As energy improves so did activities which resulted in weight loss, however pre RT/HT my weight sorted it itself now I have to watch my diet

Muscle gain, increased with activity

Testes – to some extent

Mood swings – more aware of them

Depression – sometimes get to the edge

Elation – never been one to thump the air, so?

Mental agility – Ok in short bursts, improvement is the periods get longer but nowhere near as was. Juggling more than one ball took 2 years but still frustrating as most times it doesn't work

Memory - short term is still crap, but that could be age as well.

Hair gain – recovers then starts to the recedes

ED recovery – took a good 18 months and still only around 20% improvement– but then I'm 10 years older

I was told symptoms would initially worsen then improve in small jumps rather than a gradual increase which is pretty much what happened

Head – does PCa ever leave it

Overall improvement: No science here: its like your bodies natural state is as when on treatment so you have to work to overcome that.

Good luck

Ray

User

Posted 28 Apr 2015 at 16:16

Just read in the newspaper that HT does or can cause Type 2 diabetes Andy....but not sure if it can be reversed once you've got it but I would think it can be well controlled

Bri

User

Posted 05 May 2015 at 23:22

Sorry for the delay
Thanks for the information Ray, I am going to ask my oncologist on Saturday. My hair did thicken up on top so I guess it will thin again!

I read about diabetes being triggered by low testosterone too Bri, I have it under good control, It was that helped me get my weight back down.

If I could only have one positive change form stopping ADT it would be to be less tired.

Thanks everyone

User

Posted 14 Jun 2015 at 07:19

Here we go
last prostate injection Dec 15th 2014,
no change for the first four months then I noticed stirrings down below ,still got small man bobs,penile shrinkage about an inch
not a problem if your starting point is around 9inchs but when your starting point is around 4inchs then an inch is a lot,
mentally I find I no longer look at woman as bags of cement I am now taking an interest, stirrings down below are not enough to do anything with but I will report back as the months progress,
SB time as my first six month test this week like everyone I am hoping for an undetectable ,
aches and pains in my joints are always there not sure if it is an age thing ,now 66,
good luck to all

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