What was your experience as you came off ADT? Intermittent ADT?
I thought that ADT was over when it is over, but I'm experiencing the emotions I felt while on ADT, tender nipples, and maybe fatigue 7 months after the final one-month injection. It does not appear to be over. I'm doing some research, but right now, I am jokingly referring to this as a rerun of puberty as I remember it: developing testosterone and sometimes annoyingly insistent libido, emotions, swollen nipples.
What have you experienced? Do those of you on intermittent ADT ever stabilize other than periods of experiencing libido again?
Most of the side effects I had on Lupron have diminished. New ones have now appeared after I stopped ADT. The swollen/tender nipples? Started about 7 months after the last shot I had wore off. Urologists said "hormones" and pretty much left it at that, but it might be a result of a new drug I started to address a recurrence of old man disease - urinary problem. One urologist put me on Finasteride with as usual - NO discussion of how it works or what side effects I might experience.
After Googling it - I found out it takes time to become effective and shrink the prostate - 3 to 6 months. It was about 4-5 months before peeing became easier and I usually could sleep through most of the night (I sometimes wake up about an hour before I get up in the morning - take a pee - then have another very relaxing hours sleep.) Urgency has diminished. It also has a side effect of (and I quote): "swelling or tenderness in your breasts" - yup. Having that. I'm debating going off Finasteride and dealing with worse urinary issues again. Sorta a catch-22.
Anyway - back to your questions. I've been off ADT for 9 months (1 year from my last 3 month shot) - libido has started coming back.. at least the idea of sex is interesting again. Emotions are pretty stable, sweats are history. Weakness is better, but I still love a late afternoon nap for an hour. Ambition is a bit better but not great, but that might also be age creeping up on me.
I was a Gleason-9/10 (depending on which report I read), PSA low 3, but less than 1 was my normal, with no metastases that could be found, who did 83 Gy/9-weeks of IG/IMRT, and 18 months of Lupron. PSA has been undetectable since almost the finish of the radiation. My testosterone was also about undetectable until my last read - when it got up to around 285 - almost very low normal for an old guy. PSA has stayed down while T has gone up.
Besides the obvious side-effects one that is rarely talked about but is quite significant is cardio issues due to ADT. I'd strongly suggest getting a workup by a cardiologist and see how you're doing. I did - ended up with a bunch of stents. There are a few papers out there that indicate cardio issues caused by ADT are really significant - like 35-40% of men on ADT have cardio problems probably attributable to the lack of T, and the general body damage ADT does.
HTH!
Don
... I so agree on visiting with a cardiologist. We had one come in and speak to our support group not long ago. In general he said there is a definite link between prostate cancer and heart issues .
He noted that once you go on ADT you really need to make that appointment . Much to our surprise he said the most powerful solutions he prescribes are the ones guys do not take seriously - stop smoking, cut back on booze, exercise and eat properly. He said, " sadly we can only do so much with meds"
I had only 2 shots of Lupron. It has been 6 years and My PSA is low but my testosterone is very low. I had to have radiation and it has been 5 years since that time and like you say, no real interest in sex and feel tired all the time and just feeling low, What to Do??
I was given a 6 month Lupron shot prior to radiation and the so called short effects l lasted 14 months. By month 12 it was better physically (no night sweats or hot flashes) but I did put on weight. Went from 170 to 198 and that took time to come off. I continued to experience a lot of emotional episodes and yes felt like a teen again with rising Libido. I did a video diary of my journey with radiattion and Lupron - if interested in viewing look up ... www.theprostatecancercoach.com
Lupron hits all of us differently - I have a neighbor who has been on it and he "claims" he has not had any negative results. All you can do is work your way through it. I found distractions like bike rides and walking helped - a lot. Also dare it say it - just give in an have a good cry ... it helpsTrue,
, ADT does hit everyone differently. Some men suffer terribly from hot flashes, the rest of us refer to them as warm flashes. Or I did until the withdrawal hot flashes hit. The emotions were the big one that led me to consult with a psychologist. , I am under care of a cardiologist due to tachycardia and an aneurysm, so that one is covered.
HOWEVER, I just came back from having a mammogram. (3-26-2021) Chalk up one more experience to reinforce empathy for the ladies. The sensitive nipples became too sensitive and I found a nodule on the left. As I had hoped it is just fibrous tissue, apparently from the changing hormones. Still sore, but no cancer.
Say Hallelujah!!
So it looks like a rerun of puberty as I go from castrate to normal male state. Been here before, but I will be glad to see it over and done. It would be helpful if doctors were able to give us some helpful information on living with ADT and what happens with our hormones as we move on, but I don't think they are knowledgeable on the subject.
In general I am fortunate enough to have come through unscathed, other than some bleeding bowels which is getting attention. I intentionally put some effort into maintaining sexual health and it seems to have been worth while. Who would think that having sexual activity 5 to 7 days a week would be a grind? But until the libido returns it is like brushing teeth; not particularly exiting (until aroused), but necessary to maintain health.You have to do what you have to do when it comes to" maintaining your health " Can think of much worse treatments and protocols 😀
