What Normally Happens after ADT

Hello Everyone,

It's been a long time since my last post, but I have two questions for you guys, especially you Gleason Nine guys like me. I have been on Lupron, aka 'hormone therapy' or 'ADT' for one year with one more year of treatment planned. I have been experiencing all of the traditional side-effects of this medicine, but it is doing the trick and keeping my PSA at basically 'zero'.

First question is whether most men start feeling like their old self, i.e. more energy and strength after going off Lupron?

Second question is what PSA experiences everyone has had after going off. Have some of you seen no rise in PSA after going off, or do most men see it start creeping up after Lupron is stopped. I realize everyone is different, so feel free to share your experiences. I have attached a poll if any of you prefer just responding to the poll rather than writing something.

Thanks in advance to anyone who responds. Lupron is no fun, but it sure is doing the job and for this I am thankful.

Bob656 said...
First question is whether most men start feeling like their old self, i.e. more energy and strength after going off Lupron?

Second question is what PSA experiences everyone has had after going off. Have some of you seen no rise in PSA after going off, or do most men see it start creeping up after Lupron is stopped.

Hi Bob, yeah the Lupron isn't much fun.

From my experience the side effects began to disappear within six months of the last shot expiring. The two most disturbing effects were cardiac arrhythmia, and a clinching or "trigger finger" effect in one hand when waking up. A year later and both of those have completely resolved. So I think it depends on the individual and the length of Lupron regimen for what side effects may develop and how long they last.

My PSA has risen since the Lupron expired. But I believe that's to be expected and PSA will rise to where it would be from radiation treatment alone. My RO said probably 0.2 to 0.5 and hopefully stable.

Last Lupron shot was one year ago. I was on it for one year. I took myself off it. So far PSA has stayed down. Last test showed 0.4. Took me about 4 months to loose the 20 pounds I'd gained. I exercise and continue to watch my calorie intake. I have most of my stamina back and feel 100% better. Some libido has returned.

Tom

How long did it take after your first treatment for side effects to kick in?

My SE's started with the first injection of the chemicals. I had a serious immune reaction to the Firmagon, most of it local to the injection site. Some of the long term SE's are still with me. PSA rose as soon as I got some testosterone back @ 88% per month, has since slowed to 12% last time 2 months ago. Next blood test is next week.

I have lost about 8 of the 16 pounds the Luprolide chemo gave me. I am very slowly regaining some of my muscle mass. Testosterone was 204 last time, that is way low for me. Still very little libido. It has been about 2 weeks since my last hot flash and nausea attack. Broke some bones in my arm and hand, had to get Prolia. Just returned to full use last year as it took a long time to heal.

Still have mild cognitive impairment, I notice it more than anyone else. Also mild anxiety and/or depression episodes. The coping strategies I employ in my life on an ongoing basis are sufficient to handle these, however.

EDIT: I was on Firmagon, Lupron and Eligard for 2 & 1/2 years. April of 2017 it will be 2 & 1/2 years since the last injection.

Mr. Bill,

Regarding your question about how long it took for the Lupron side-effects to kick in; it took about a week before I started having hot-flashes where I would start sweating profusely for about three minutes and then I would go back to normal. The hot flashes came on for me several times a day and several times during the night. I have found over the past year that having clothes that you can quickly take off, i.e. a button down sweater, or buttoned shirt and a towel or small fan and drying towel near the bed help cool and dry off quicker and get back to normal.

The gradual loss of energy took a several weeks before I noticed it. I have learned to live with it and recognize it as a side effect. Hiking 2-3 miles every day seems to be the best energy boost I have come across. If you feel lethargic, try to force yourself to get out and walk. It really, really, helps me get some of my energy back.

I have noticed many HealingWell posts from other Lupron patients say walking or light exercise helps them keep their energy and spirits up.

I have also gained about twenty pounds since starting Lupron. Again, this seems to be a common side-effect. I can look at food and gain weight. It's not that I'm eating more, it simply does not seem to get burned off as it used to. Again, I think it is the Lupron. I have really started to watch what I eat so I don't get any bigger.

Despite all this, I am happy Lupron is doing it's job. There are no guarantees regarding what will and won't work, but many men on this site report good success with the drug. If it works, the side-effects mentioned above are worth it.

Good luck to you Bill and let me know if you have any other questions. Bottom line, each Lupron patient reacts differently to Lupron, but my side-effects have been very typical. I'm looking forward to my last shot.

Bob

I should add here that Lupron, Eligard and the like do not just shut off your testicles, they shut off your whole pituitary gland which produces a bunch of regulatory hormones. One of those is prolactin which (among other things) tells your kidneys how much water to leave in your blood. When you shut off the pituitary gland, your kidneys leave more water in your blood, thus you get water weight gain.

Other hormones regulate your base metabolic rate, so when they shut down your metabolism slows as well and you gain weight unless you compensate for that.