This is my second post, I ask for your opinions. In 2013 I was going to do radiation for a Gleason 9, so I went on Zoladex it was for 3 months. My GP talk me into surgery instead. In 2015 I did salvage radiation and again did 3 months of zolodex.
From 2013 to 2019 I lost a lot of strength I asked them if 6 months of ADT could cause such an impact I could not get a definitive answer.
In February 2019 my PSA went to 6.6 the Doctor decided it was time to go back on medicine, we decided 150 Bicalutimide (generic casodex) because I was working out trying to gain strength.
He decided I should have a bone scan, which surprised him because of low 6.6 PSA, showing I had two rib and one spine met this prompted switching to Zolodex in May now 7 months more on it. ( I did sabr radiation on these Mets this summer.)
The issue is my strength continues to deteriorate, I can’t do stairs, hard to push out of bed, my hand strength is nothing I have 80% of my strength from 2013. Getting out of chairs if low or really soft impossible.
(I went to see Midway last week only because my two sons went with me so I knew they could help me out, they are low and tilted.)
1- I am wondering if anyone else suffered severe strength loss on ADT. And what did you do. Especially losing so much on the first two 3 month periods only from years before.
2- Did anyone build strength on casodex/Xtandi
3- Did anyone build on other medicines.
In my previous post I asked about Xtandi Monotherapy, my QOL strength is desperate and I want off ADT hoping I can build strength on Xtandi then if I have to go back on ADT I will be at a stronger point.
I am a little disappointed with the Doctors they did not think the two earlier 3 month periods total of 6 months of ADT could make me so weak yet never suggested an alternative, can anyone suggest an alternative to look at that could affect strength so much, not ADT.
Any suggestions how to rebuild, I have been working small weights a little walking but I get tired quick again hoping new medicine gives me more energy.
Because of the bone Mets they have said I can expect 3-5 years. Currently as of last month I am .048 PSA with low testosterone, however testosterone went from 1.2 to 1.9 during the 3 month tests. These are Canadian numbers I think they use something different in US tracking.
Secondly I came out of surgery in 2013 had to pee 2 maybe 3 times a night, now after radiation 6 to 9 at night plus a daytime pad. I regret doing 2015 salvage radiation, but hindsight doesn’t help now.
Thanks in advance for your collective wisdom.
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Canuck53
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Being on ADT the goal is to bring your T down low so it doesn't feed cancer. Check into T and you will find maintaining T (200's-800's)will give support to strength as well as other benefits. Having low T, in my opinion, will give you low strength. I am on ADT and my energy/strength is low. I did a minimal carpet cleaning yesterday and ended up sweating profusely. My T is below 30 and PSA is is .6. On shot Sabbatical for now, but on little exertion I break out in a sweat.
I am on Lupron and zytiga.. In the first 2 months I had fatigue and low strength. As suggested by fellow forum members, I started walking 4 to 5 miles a day and dancing one hour a day. Lo and Behold, my tiredness just went down by about 80% and I am able to do most day to day physical activities now. Besides that, I am on total plant based diet, cabbage, broccoli and cauliflower every day with a glass of tomato soup and a bunch of other stuff such as green tea, turmeric, ginger, garlic, moringa leaves, neem leaves , chaywan prash (herbal gel like thing) and so on.
I do not have hot flashes or much tiredness. I really don't know what is helping me but I am pleased with the results.
You may feel better with estrogen patches (with tamoxifen to prevent gynecomastia). A few guys on this site are using it instead of Zolodex. It will prevent testosterone production. Whether you prevent testosterone production with estrogen or Zolodex (or Zytiga), or block testosterone from getting into your cells (with Casodex or Xtandi), you will still lose muscle strength. You can discuss with your oncologist intermittent ADT, which will give you some vacations.
Thanks don’t know much about it, Wednesday I will ask new Doc about that, with bone Mets the radiologist thought no ADT holidays. QOL I am looking for what allows for a little strength building.
Just in the last month, I have lost strength in my legs. I have to use a cane to push up from a chair. I don't have enough strength to step up on a curb. Walk about 10 yards and stop to catch my breath.
I got given a first class walker I take it to watch grand kids soccer, heavy duty, high seat easy to get out, gives me confidence to walk.
I have to lean on a car to get up a curb. Only 6 months of ADT for you it might be worth it for you also to check other medicines.
If the Government won’t pay for Xtandi because procedures I am going to look at 150 casodex or what Tall Allen mentioned, our medical system pays for everything but has procedures, it seems in US you can argue with your insurance companies to sequence.
I’m on Lupron Xtandi for 12 months now .... last 6 months undetectable psa and T .... I continue to experience extreme exhaustion along with a load of companion adt side effects .... gasping out of breath, cold clammy sweaty... hot flashes .... big boobs ... genitals gone ...weight gain ... the works
Know what ...I don’t care .. I’m undetectable psa, all blood chemistry back in normal ranges after scary low - high .... most of all gaining some additional precious time with my loved ones ... .... wife is happy and I can cinch up the jock strap ( it’s empty anyway yayahahahaya) and step up and enjoy the fact that things are going relatively well.
12 months ago my oncologist introduced me to my hospice nursing crew , but I’ve surprised them all and intend to keep on keeping on. Adt is rough .... sure it is ... but the alternative is worse.
We got this brother , everyone has everyone’s back here in the group. Together we are strong 💪💪💪💪
After surgery, SRT I did 18 months of ADT, six cycles of taxotere and 25 more radiation treatments. My last Lupron shot was in May 18, by October it had cleared my system, T was at 135 and in Feb this year 482. Last PSA was .06 in August, next labs and consult are Jan 20.
Throughout my treatment I exercised - biked, swam, elliptical, weights, basketball, hiked in the mountains...at times it was almost comic. I went on a 20 mile bike ride one day, after about 16 miles I had to stop, put the bike down and rest. A young lady stopped and asked if I needed any assistance...! I said thanx, then finished the last four miles. Another time I could only do ten minutes on the elliptical vice my normal 30, so I got off, lifted a few weights, did five minutes more, lifted weights...
There's no doubt about the fatigue, metabolic and other affects of Lupron, I think doing what I could early on made a difference. That being said, there were days during the chemotherapy where I just said not today!
So, your fatigue is real, try and do what you ca, I think it helps.
Was on ADT therapy - lost significant strength. I work out regularly. Bench press dropped from 5X215 to 5X150. Had significant hot flashes. Getting up to pee a night increased from 2X average (have BPH) to 4+ times average. Now off of ADT, slow strength gain. Recommendatio: follow Ornish regime. health.harvard.edu/mens-hea... It may not work, but it might help. Good luck.
Thanks everyone yes I want to increase exercise yet there is some guys like GranPaSmurf that the stuff almost wipes out.
What I wonder if you go on Casodex, Xtandi or? instead of ADT do they allow you you build and maintain a little more strength because you still have testosterone , I thought they did.
What I still don’t believe is I only took ADT for 3 months in 2013, 3 months in 2015 but I steadily lost strength till 2019 ( now back on since May)
To me it should have cleared my system but it became permanent, from 2013 to 2019 a steady decline.
All normal strength loss. I agree it's horrible. Just don't do too much or you'll get too weak and have a huge risk of developing CRPC like so many have.
I hate Lupron. It cut my strength in half, made my teeth loose, took away my sex drive, and gave me heart problems along with CRPC. I would never do it again.
Yeallllllllll ..... whacha gonna do with that gallon sized jar of mayo anyway ... uh ....huh ... probably be down at Home Depot shopping for a 12’ X 12’ black plastic tarp too. Let’s see now ... ostrich feathers , spatula and a rubber duckie .... yep ...... sounds about right.
My line is “well you are up” now that I built my chair up I can get out pretty easy still try to use the line though wearing thin. I have a 9 year big strong grandson who can open things up.
I knew things were serious a few years ago when I couldn’t open a beer can, medical emergency.
I just smash them on my forehead and lap it up as it drains down my face. Do it out in the garage tho.... 4 - 5 of those and it doesn’t even hurt anymore. 👍
There is no doubt that ADT affects strength. If you take it for only 3 months it is unlikely that your Testosterone levels will not bounce back when you stop. However, you might like to get the T level checked. Of course if you are back on ADT that suggestion is a no, no. I am 74 years old and my T level was at 445 in June 19 when I started on Firmagon. In a month's time it went down to 20. I initially had a lot of problem with hot flashes and I felt a loss in strength though I was doing regular exercise. I read about other's experience and learnt that the only way to negate the loss of T is to exercise including weight training. Hence, I started pushing myself to greater levels of exercise and regular 3 days a week weights. I now find after 7 months that I have regained a lot of my stamina and strength. I would say that I am maybe down 10% at most from my earlier strength. I can check this out from my golf. If I was hitting an 8 iron 150 yards I am now hitting it 135 yards. In between it became worse now it is picking up. I don't think it will every come back to pre ADT days but I can live with 10% loss of strength if it it necessary to keep myself alive. I do not feel any loss of energy or fatigue. I underwent 39 sessions of IMRT between Nov and Dec. I did not feel any fatigue owing to the RT. I can only attribute it to the exercise regimen and eating more veg and soya protein. I am sure it also depends on one's initial level of fitness in general and one's age.
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