ADT stories

All I have heard about ADT is horror stories any relatively positive stories?

Welcome to HW. Yeah there are horror stories, but there's just as many not horror stories and guys who've lived years and years and more on ADT.

Stecruz, please tell us why you're asking? What is your history?

Stecruz said...
If it is ok I will start a new thread with my story as I have questions about my situation

Go for it. Take your time and provide what details you have available. I'm assuming you are already treated sometime in the past? If so, how long ago, what treatment(s) have you had, what was your staging/grading, etc.

Starcruz, welcome.
I had 6 months of ADT. I won’t lie, it’s not fun. But it’s manageable for most men, especially if you know how to combat side effects going in.

I had hot flashes, but not if the magnitude some men post about here. It was, again, not fun but manageable. I had no mental brain fog, no meaningful fatigue, and it did not affect my lifestyle ir ability to work full days.

I did, like Paul above, watch my lipids , in particular my triglycerides, go off the charts. And I gained 10 - 12 pounds, mostly in the form of a spare tire around my middle.

My advice would be...
1. Make sure your situation warrants ADT (particularly if it’s in conjunction with radiation). Many men are over treated with ADT to help the radiation when it’s not always necessary.
2. Assuming you go on ADT after considering #1 above, start exercising immediately. Both cardio, and resistance training. To both keep weight off and keep lipids under control
3. Watch your diet. Low carb, low saturated fat, keep calorie intake reasonable.

If you do all this you should likely be ok.

Read the clinical studies that pertain to your case, and if you can avoid it....DO.

Stecruz,
In my time on the forum I've seen guys report very tough experiences with ADT, and a handful of guys report relatively positive experiences. I hate to say it, but most guys' experiences seem to fall on the harder end of the spectrum. But, that could just be my perception.
Anyone on ADT almost certainly will have a complete loss of libido. This side-effect has never been a concern for me. The extreme fatigue, brain fog, and reduced sense of wellbeing reported by many guys is what has worried me. With regard to those issues, my experience has been pretty unremarkable. I've only been on ADT for about a year, but I'm hoping my experience will hold up over time.
I've noticed that the guys who do the best seem to be active in one way or another.

First go-round with leuprolide chemo was 2 & 1/2 years on and about 2 & 1/2 years to recover my hippocampus/pituitary hormones. I found that the ADT had killed one of my testicles outright - it stayed the size of an almond and my T only hit 340 (originally 750), then dropped to 160 over 12 months. PSA went up to 3.3 so I went back on leuprolide chemotherapy this past Nov. Started Xtandi yesterday as well.
These chemotherapy drugs make profound changes to your body and mind. You can control the situation to a great extent, however.
This presents a great opportunity to make heavy exercise a part of your life. A serious daily exercise routine is very good for you, both body and mind. It calms the emotions, brings a measure of satisfaction with your life and masks minor pain issues. It is also extremely helpful in preventing dementia, an issue for those of us on leuprolide chemo, and in slowing the progress of our cancer.
This round of leuprolide chemo I have enabled myself to feel sexual despite a complete lack of testosterone. Empowering desire to be a purely emotion-based experience rather than hormonal-based feeling is a very enlightening experience.

the first rule of ADT is: no one wants to be chemically castrated.

second rule: if you forgo ADT against physician advice you might spend your final years chemically castrated (or wishing you were).

Stecruz:
I'm the statistical outlier around here who had very few adverse effects. I was on ADT - monthly Firmagon shots for a year and have been on ADT vacation since last May. While on ADT my PSA dropped immediately in the first month and became completely undetectable >0.02 a couple of months later. I had no hot flashes and no fatigue that I noticed. I think I may have lost a bit of stamina. When doing heavy outdoor work I'd sometimes get winded and need to take a break sooner than seemed usual. I also developed aching knees, but I think that may be unrelated to the ADT. I've been off ADT 8 months now and the knees don't seem noticeably better. So that might just be part of being older than I think I am.
Jim

garyi said...

F8 said...

garyi said...
Read the clinical studies that pertain to your case, and if you can avoid it....DO.

the guys who don't want to do ADT usually can find something on the internet that will let them off the hook.

LOL....and visa-versa!
Living a long health life is good. Living it without the "need" of ADT is a blessing.

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I don't think I've seen anyone trying to find a reason to use ADT when it was not recommended by the doctors but I've seen plenty of guys do the opposite.
to me it makes more sense to err on the side of ADT. the minimal approach to defeating cancer can lead to all the treatments you sought to avoid and a buttload of permanent SEs.

Hi DaysBetween. I hope you continue to do well on your PCa journey! As another guy who had a G10 biopsy, I'd be interested to know your PSA history leading up to your biopsy and diagnosis, especially in light of your young age. Thanks!

Djin

Post Edited (DjinTonic) : 1/21/2020 7:10:33 AM (GMT-7)

"I have a pretty straightforward reply to the negatives of ADT and I have said it here before. For me ADT = Life."

Similar to Randyd, I always say that if ADT wasn't available as a treatment, I'd sure be wishing something was!

@DaysBetween: continued success with your treatment!