Start of 36 mo of ADT?: I started on 3... - Prostate Cancer N...

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Start of 36 mo of ADT?

Dracus profile image
31 Replies

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

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Dracus profile image
Dracus
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31 Replies
Tall_Allen profile image
Tall_Allen

From the first injection.

Dracus profile image
Dracus in reply toTall_Allen

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.

Tall_Allen profile image
Tall_Allen in reply toDracus

How did Lupron cause your legs to be shot?

Dracus profile image
Dracus in reply toTall_Allen

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.

Tall_Allen profile image
Tall_Allen in reply toDracus

If you can afford it,get a trainer to help rebuild muscle.

cancerfox profile image
cancerfox in reply toDracus

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.

🤔

Dracus profile image
Dracus in reply tocancerfox

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.

cancerfox profile image
cancerfox in reply toDracus

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. 🙂

Dracus profile image
Dracus in reply tocancerfox

Thank you. Best wishes and I hope you find those better days ahead.

Aodh profile image
Aodh

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

Dracus profile image
Dracus in reply toAodh

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.

jazzy53 profile image
jazzy53 in reply toDracus

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.

Dracus profile image
Dracus in reply tojazzy53

Hello. Good advice. I try to walk as often as possible. Lower back and hip pain makes it very difficult sometimes. How long have you been off ADT and is your testosterone level coming back to normal?

London441 profile image
London441

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!

Dracus profile image
Dracus in reply toLondon441

Thanks. Good advice. I’m trying not to give up.

binati profile image
binati

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.

maley2711 profile image
maley2711 in reply tobinati

Yes.....studies show a minimal marginal improvement in results when exceeding 24 or so months of ADT combined with RT.

binati profile image
binati in reply tomaley2711

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.

Dracus profile image
Dracus in reply tobinati

I believe you may be right and that makes it very difficult to decide what to do. You only get one shot at it and you don’t want to stop prematurely and regret it forever.

Sandy752 profile image
Sandy752

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.

Dracus profile image
Dracus in reply toSandy752

Thanks for the advise. I’m curious however why you didn’t start on ADT prior to your radiation treatment.

Sandy752 profile image
Sandy752 in reply toDracus

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.

Dracus profile image
Dracus in reply toSandy752

Thanks for responding. Now I understand. As a result of a change in the standard of care my hormone therapy was used to shrink the tumor before radiation began to make it easier to target. Good luck with your continued therapy.

maley2711 profile image
maley2711 in reply toDracus

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??

Dracus profile image
Dracus in reply tomaley2711

I didn’t know that there was no enhancement of the cure rate by starting hormone therapy prior to radiation treatment. Another disappointment in my journey! Stay well.

binati profile image
binati in reply toSandy752

You are one of the lucky ones who has a long survival on ADT. Best of luck.

conbio profile image
conbio

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.

😀

Dracus profile image
Dracus in reply toconbio

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.

conbio profile image
conbio in reply toDracus

Understood - best wishes

treedown profile image
treedown

My 2 years started with my 1st injection.

Dracus profile image
Dracus in reply totreedown

Thank you. I’m glad that’s the case. That means I’ll complete my treatment sooner.

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