Life after ADT

[watertender]

Hello, I finished my ADT treatment 7 months ago ( ORGOVYX for 22 months . Still having emotional rollercoaster. Held my own during the cancer journey ( Brachy therapy, 25 sessions of IMRT, then ORGOVYX. I guess I was lucky only mind numbing, soul crushing fatigue, bad brain fog/confusion, shrunken penis/and tentacles, normal hair loss in certain places, but I am alive!!!! no weight gain, no man breast, but as everyone knows life without testosterone is a bear...... Has anyone else had more trouble emotionally after the treatments ended? I thought maybe now flooded with too much testosterone ( my M.O. says she is happy with my T levels, PSA is low, will run this by her next time I have my video chat

thanks for the help, Scott

[Yokohama2023]

Hi, similar treatment as you.. 5 months since last ADT treatment but on it for 9. I’m in another country Japan with limited language ability and have to wait for 2 months for my testosterone report .. only see the doctor every 3 months. I understand the time required for testosterone to recover probably.5 to 1 month per ADT usage. Working out and exercise is key I’d say. Sounds like physically you are doing well. Might take longer for testosterone to recover. Manhood is recovering for me slowly but a progress. So don’t stress will happen .. you probably have 5 to 10 months for testosterone to recover and if you focus on getting outside, exercising, you’ll feel alot better at least I did . Good luck be strong !

[watertender in reply to Yokohama2023]

Thanks for your kind response. Good luck to you!

[Mike1971]

waterbender,

It’s a crazy hormone roller coaster to be on and the situation can sometimes be scary in ways most (lucky) ppl will never understand. Please make sure to get some help if you need, be it therapy, antidepressants or other.

[addicted2cycling]

watertender wrote -- " ... ( my M.O. says she is happy with my T levels, ... "

Just curious as to what your *T levels* have hit?

[London441]

it’s nice that your MO is happy with your T levels. It would be better still if you are. What is it currently? What was it when you began treatment (if you know) ? Also, how much do you exercise and what kind? Are you or have you taken any antidepressants?

[watertender in reply to London441]

My baseline T was 502 and as of a couple months ago it was at 248. Hoping next time it is checked it is somewhat higher but my MO feels good that it is not shooting up quickly since I have high risk pc. So we shall see how it all goes.

[john510185]

Sorry to hear about your tentacles. Do you still have the full complement of eight? 😉

[watertender in reply to john510185]

John, thanks for giving me a giggle, some of these websites have auto correct, but penis and testicles shrinkage was an unpleasant surprise, but at my stage in the game (75 years old), that train has already left the station. Take good care of yourself, and I will keep batting, Scott

[john510185 in reply to watertender]

All the best to you Scott. Naturally, I've got the same issues. 'The New Normal' I call it.

Cheers

John

[Grandpa4]

I did 2 years of ADT and Abiraterone. For me the worst side effect of the drugs was a decrease in muscle endurance. I am an avid exercise and I just could not keep up with friends anymore. I stopped it last December and my testosterone was in the normal range 3 months later. Before treatment my testosterone level had been 800. I have dramatically improved. I have not had major emotional problems but each milestone kind of reminds you that you have this disease. Denial is a very effective strategy for avoiding this reality. I wonder if that might be playing a role for you. I know that despite my unmeasurable PSA my odds of cure are pretty low. I try not to think about it.

[watertender in reply to Grandpa4]

I agree with your very astute observation. Denial is very effective strategy these days.

Looks like you have had some of the same bone issues I am dealing with. I am not taking Prolia or anything of that nature currently. Was trying to work through it through exercise but slipped on some ice and took a fall screwing up my SI joint and getting a couple compression fractures to boot so the exercise issue has been much curtailed.

[hiker75 in reply to Grandpa4]

Second the statement on lack of endurance.

[Yzinger]

why are there so many members able to come of the T lowering drugs? Just deciding to live the rest of your days on your terms? Is that kind of the thought?