I started on 36 months of ADT in Feb 2020
(Neoadjuvant) followed by 44 sessions of IMRT
from May 2020 to July 2020 with Continuous ADT from Feb to now.
When does the 36 months start from? From the first injection in Feb or from the finish of IMRT in July. I’ve found conflicting answers on line.
I would appreciate the members opinions.
Thank you
From the first injection.
Thank you sir. That means I have 27 months to go. Not sure if I can make it, the Lupron side effects seem to be accumulating. My legs are shot as of the last 3 months.
How did Lupron cause your legs to be shot?
Loss of muscle mass in my legs over the last six or seven months has made it extremely difficult walking any distance and especially climbing stairs. Correction; I only have 9 months left of ADT. I have been on Lupron Continuously for the last 27 months.
If you can afford it,get a trainer to help rebuild muscle.
Your largest muscles are in your legs, so naturally this is where you notice the most difference when being treated with ADT. I used to have very strong legs from jogging, bicycling, leg exercises, etc., now not so much after 15 months of no testosterone, despite continuing the same activities. Yesterday after riding only 25 miles on my bike I could just barely carry it up the stairs where I live because my legs were so weak. I think the only way to really get back to something resembling normal is to be off the ADT. Sometimes I wonder if it would have been better if ADT had never been discovered, so that maybe something less detrimental to our bodies would have to have been found instead. Once they went down that road, there was no turning back.
🤔
I agree with you completely. My leg muscles have dramatically been affected, not so much the other parts of my body. I have nine more months of Lupron shots to complete my 36 month treatment plan. Each week it seems to be getting worse. The sad part is I’m not confident that my testosterone will ever return to anything close to normal. Experiencing tremendous fatigue after minimal effort also. The whole thing has brought about a great deal of depression. Mostly because I can’t do very much with my two young grandchildren who I absolutely adore. Sorry that you are having similar leg problems. Stay strong.
You too. The weakness definitely keeps getting worse with time, though probably at a slower rate. Sorry to hear about the depression, I have an inkling of what that is like because I went through an episode of anxiety before I was diagnosed with prostate cancer.....I wonder if my body was trying to tell me something? Anyway, I hope your testosterone returns to a level out of the hypogonadism range when you stop the Lupron shots, though it could take a while, unless you do hormone replacement therapy. I'm off Eligard shots myself now and hoping for better days ahead. 🙂
Hi there, I started my 3 years of ADT in May 2019. I had my last (3 month) shot in February this year.
In my case it was 39 sessions of EBRT, though they started in Feb 2020 (I had difficulty in getting my PSA to stay low enough to start radiation).
I think that the last year of ADT can be the hardest, but it is worth persevering to the end. For me, I feel that I have done all that was open to me to do in order to maximise the potential for a cure or at least a durable remission.
I found it best not to concentrate on how much time was remaining, and try to live in the day, taking it one day at a time. None of us have a guarantee of any tomorrow.
It has worked for me, that is it has allowed me to focus on what’s in front of me and to gain enjoyment out of each day. It may sound corny, but I now am enjoying life more fully than I ever did when I worked and didn’t have time for much else!
I hope that you can also enjoy something from each day as it comes until and beyond the completion of your ADT treatment.
Hugh
Thank you for your response. You are absolutely right when you say that the last year is the hardest. For me things got progressively worse as each injection proceeded.I appreciate your advice about staying in the present moment and enjoying each day. I hope things go well for you now that you are finished with the hormone therapy.
I was on 24 months of ADT with 40 radiation treatments. The muscle loss and fat accumulation were significant, even profound, but I found daily walking to be enormously helpful. I'd recommend starting with a modest walk, even down the block and back, and see if you can gradually work up to longer and more strenuous walks. Don't worry about how fast you walk or whether you have to rest along the way. It's good for maintaining some muscle mass and preventing further wasting, but also for mental peace of mind. Take your naps but try not to give into the fatigue, both for your physical and mental wellbeing.
You are correct there is only so much a trainer can do. The rest is up to you.
We know hard to stay committed on ADT. If you were not in the habit previously it’s harder still. However, the alternative is to succumb to the fatigue, which not only makes life increasingly miserable but is dangerous to overall health in a number of critical ways. Don’t give up!
Most people I consulted said that 24 months is just as good as 36 months. I was recommended 36 months but stopped at 31 months. My T serum for the past 3 months is below 20 so looks like it is going to be 36 months anyway.
Yes.....studies show a minimal marginal improvement in results when exceeding 24 or so months of ADT combined with RT.
Benefit if any is statistically not very significant in increasing from 24 to 36 months. Not sure if it is worth the impact on QOL.
I'm on my ninth year of continuous Lupron (injection every 4 months). I went on it after 42 radiation treatments failed to cure me and PSA rose. Everyone is different but I find daily walking of at least two miles, light weight exercises and maintaining my weight help somewhat with the fatigue. I'm 77.
Thanks for the advise. I’m curious however why you didn’t start on ADT prior to your radiation treatment.
In Ontario Canada in 2010 it was not standard practice to go on ADT prior to radiation. I don't know when the change was made here or elsewhere. At that time one did not go on ADT until after radiation and only if PSA had risen 2 above the low point after radiation.
apparently the main benefit of ADT prior to RT is to shrink prostate.......does not do much for cure rate per studies...ADT enhances cure rates when done concurrently with and after RT. I believe I am remembering correctly??
I'm 8 months into my 18 moth regime of Lupron. As others have said - get a trainer. I'm almost 67 and it has helped - no loss of muscle mass or strength. The EBRT reduced my RBC a bit but that is coming back. You really have to stay at it.
People vary on the other side effects as well. Friggin' hot flashes at night are annoying but my wife say to pretend I'm a middle aged woman.
😀
Thank you for the advice. However, I don’t think a personal trainer would work for me. I am 80 years old and at times so exhausted that I can’t exercise. Therefore I would find it very hard to maintain a proper schedule with a personal trainer. 10 years ago this would not have been a problem. I seem to have a lot of muscle and joint pain also which makes it extremely difficult to exercise on those days when the pain is present. I have a good amount of home exercise equipment and I’m doing the best that I can. Good luck with your hormone therapy and I’m glad that you were able to maintain muscle mass.
My 2 years started with my 1st injection.
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