Why aren't doctors acknowledging muscle wasting and osteopenia due to ADT. My husband began a round of zoladex about 4 months ago. The last time he did it was in 2014. After 6 months his butt had lost muscle and was ripples. His legs lost a lot of muscle. Also, there is osteopenia showing up. All this creates weight loss and a more frail look. It's not necessarily the cancer and we know for a fact that after 4 months he's back to a similar looking butt and thighs. I should have taken photos. The docs don't even look at the body any longer let alone touch it.
I'm not angry. I'm being direct with our experience. I say this because he is having a hip replacement in a week. His nutritionist asked about a weight loss that is due to muscle loss. She was assuming 'cancer wasting'. Our doctors also look at weight lost due to cancer wasting and not the meds. Of course, I realize, it could be a combination. When I see directly after 4 months the same pattern I know what it is.
How long can someone be on these drugs and how much muscle can someone continue to lose. Because of bone on bone hip, he can't exercise. So afterwards, it'll take time but he will exercise again. I know exercise can help. Also, an estrogen patch, with the zoladex, though we didn't want to confuse the issue until after surgery- since blood clots could be an issue, so we are avoiding that for now.
Zoladex created more muscle loss than Lupron, though Zoladex worked better.
After surgery we have to regroup. We didn't do the bone strengthening drugs luckily since my husband had a lot of dentistry done. It would have been a nightmare.
Thanks...
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Bluebird11
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I understand what your saying I shall await the replies from our knowledgeable members with interest. Six plus years on lupron Has taken a toll on my muscles and dumped the residual fat around my stomach. I do exercise a fair bit but the lack of muscle is beginning to tell
Thanks. It is more for me a truth of not only my husband’s experience but many others.
When truth is told, even difficult truth a trust is created and a care to be generous enough to tell that truth. There is comfort in that
It’s a difficult side effect though gives with it more time to live this life.
I’d rather the truth about a widely known side effect than just loss of weight and wondering why. Muscles carry a lot of weight. Bone carries weight, plus one can look more frail or fragile. It’s not only ‘the cancer’.
Aside, this phone has a stubbornness to it I type and then read back words I never typed in it could get me in trouble 🤓🤓
Absolutely..It is not only "the cancer" Sarcopenia (muscle loss) is a confirmed side effect of any type of Leuprolide. If knees are bad, one way to still do exercise is to lie in bed and do use dumbells and rotate arms . This does not cause strain on knees. Also, doing lot of stretching and yoga postures while lying in bed. I mean..try to innovate ways to do physical activity with minimum or no strain on joints.
Thank God ! I have had no visable signs of pc for over four years now. But I’m messed from stem to stern .. not normal by any standards. I can never complain to my doctors about all of the side effects . It’s a miracle I’m here at all. Drs concentrate on ridding the pc . The rest is up to us to deal with . The side effects of adt are well known . I think many doctors avoid brutal honesty if possible. I thought the same Initially. Why didn’t they tell me? You’re not alone in this . That’s the way it is . 😷
Same here the only real warning I got was from my RO that said there would be shrinkage down below. That was true. I have kept off the belly by dropping weight and staying very active, I read about that before my first Dr visit. I do mostly leg workouts now that the gyms are closed here so those muscles have survived so far, but I am pretty thin up top. 5'11 and 160#.
I’m hip baby. Yah, I’m the thin man. Better then belly fat ruling our days. We are slated for cardio . Less fat to pump through is good. I’m 6.3 193.. down from 233 with muscle. I’m just Lucky to be alive ..💪🥊
Sadly, loss of testosterone [T] results in muscle loss and fat gain. Restoration of T would reverse that, but I know that isn't an option. Exercise can help somewhat.
Loss ot T tends to cause a reduction of estradiol [E2], since men make most of their E2 from aromatization of T. When E2 falls below ~12 pg/mL, bone loss can be rapid. Fortunately, E2 can be restored via a low-dose E2 patch. The aim would be to get E2 to ~20 pg/mL.
"Five dosage strengths of Vivelle-Dot (estradiol transdermal system) are available to provide nominal in vivo delivery rates of 0.025, 0.0375, 0.05, 0.075, or 0.1 mg of estradiol per day via the skin."
He would need only the lowest dose patch - & perhaps not every day.
Why do doctors not test E2? The patch is a better option than bone loss followed by a bisphosphonate.
You would need to verify that his E2 is dangerously low & verify that the dosage is effective.
E2 is only one of a number of factors for bone health. Everyone remembers calcium & perhaps vitamin D, but the magnesium:calcium ratio is important IMO. Zinc, boron & ? Plus vitamin K2.
My advice would be to revisit your concerns with estrogen patches, so far as increased risk of blood clots. There is no doubt that ORAL forms of estrogen can be harmful, and increase various risk factors. But transdermal appears to be very different, if you look at the studies.
I would not expect all doctors to be aware of this, and it could be one reason why patches (or creams/gels) are not "standard of care." They are suffering a guilt-by-association, lumped together with the decidedly more dangerous oral estrogens.
Realize, too, that some doctors DO acknowledge muscle wasting and osteopenia. But probably most are putting focus on the PC and its treatment, rather than "treating the treatment" itself. You are absolutely correct that they all SHOULD, because they are essentially imposing the disease of hypogonadism on their patients, and it is absurd to suppose that patients ought to go find a DIFFERENT doctor to treat the disease created by the treatment protocols of the cancer docs!
In the end, it is the patient (and spouse!) that must weigh the potential costs and benefits of various options, and the importance of QoL concerns. You need to know exactly what pre-conditions your husband might have that could increase potential risks for estrogen, as it appears you did for the bisphosphonates.
Perhaps even if there is a bit of risk to the E patches, that is a risk worth taking?For myself, it certainly would be, based on the almost universally positive outcomes that I am familiar with.
By all means do your own research, though, and do not expect your docs to necessarily to be pro or con based on their OWN thorough research. They may have given it lots of thought, or very little, or even none at all.
I would also add, perhaps there are some forms of exercise that could be attempted that don't involve the hip? I think ANY form of resistance training, no matter how limited in muscle groups, would be better than none. The longer without exercise, the less energy and muscle there will be to do exercise in the future. By all accounts, getting SOME form of exercise seems importantly beneficial.
Why indeed? I think it is because they feel it’s a secondary condition that we all get from adt and they are only concerned on stopping the cancer . They know that we are racked by side effects .. I was first on double adt : Lupron and tak-700.. I had tubes Out of my back and a foley then stents for over a year and a half. During that time I was told not to lift over ten pounds so as not to dislodge the surgically implanted tubes. So I did not. I did 8 weeks of imrt also. During the first two years I lost all muscles of course. I m in osteopenia and taking prolia for the last 18 months. It has helped my joint pain and my disintegration hip pain. I f I live long enough I too will need a hip replacement. Not bad enough now but very painful still . I had a friend that was a heart surgeon nurse. They are taught not to ask “Why “ questions to patients . The whys are so obvious. It’s the adt .. rather the nurses give options and choices to the patient. They don’t answer why questions. Only offer help. The doctors know why we are in osteo and muscle wasting . It’s the treatments. I’m now 59. Over five years of this. I’m now 183 , down from my mostly muscular 233. In my case it was those first two years where I lost it all. Now I’m frail and gaunt with no endurance strength or stamina. Cognition gone .. but I’m still here by some miracle .? Still on adt .. just finding some acceptance and a little peace of mind in an hormonally altered Unich position is my the daily task of it all . Being happy running at 35% isn’t easy for a man . Anyone that says different , doesn’t know a freakin thing. We battle to save our spirit and soul. I fight of anger . Sometimes it wins. I pray that you and Mr. bluebird stay in love and find your way . It’s all uncharted territory .. Be well and good luck to you both ., hang in there.🙏😷
I have wondered recently after reading your post if in fact the exterior muscle loss is just a transition to a increase of mucles of the heart. You specifically and this forum broadly are such an example of compassionate, funny , intelligent people. Just sayin.
Thank you kindly. I Have no medical expertise ..in fact I avoided doctors until it was almost too late. However I do have compassion for anyone in our shoes.APC has increased my capacity to love others. Literally my veins have shrunk and I’d imagine so has the physical heart. The emotional heart is abound. If we had more compassion in this world no one would be left to die along. I’m fortunate to have love to see me through this trying part of life . I don’t know how guys can go it alone. I Know several that do . Stronger than I? Take care brother!🏋🏼🤙🏽
Onc doctors are concerned with killing the cancer. My Onc does check my weight and appetite but I think that’s more related to treatment than anything else.
I know at 55 I am younger than many here so what I write won’t be relevant for many but I have been on zytiga for 4 years now, T4n1m1a, I had osteopenia a couple of years back.
I have been running with cancer since diagnosis 6 years ago but in the last 12 months I have upped my running and 5 days a week do core exercises for about an hour. More specifically I have run every day average 6 miles for the last 250 days .
I found after the first 3 years of muscle loss, bone ache and belly growth that all has been reversed.
Belly reduced, weight reduced, muscle growing (not middle one though lol) and last bone density scan no osteopenia.
I eat quite healthy but still devour a large bag of chips once a week and drink maybe 10 pints of beer a week too.
So my survey of 1 says if you can manage daily exercise plus a bit of core then it’s possible to reverse some effects of zytega.
I realise I am very lucky to be able to do this stuff but it took real effort to get to my current routine from a little running only to where I am now.
I am with you as well and 57, but cycle 100-150 miles a week and working on get running back in to my regimen. I stopped during RT and when I started again my calves hurt for a couple days so went to walking approx 7 miles 1000 feet of elevation instead on off bike days. A couple of days ago ran just under 3 miles and pace was good for me and I will stick with it this time. I am sure after a few weeks I will be back to longer runs. The only thing I am missing is weight training as my gym is still closed for covid. I do not drink beer or eat chips on any regular basis but may have a little red wine if offered. My arms upper body and legs are lean and ripped , if you can be skinny and ripped. Mid section not at all. My Dr feels confident my tolerance to meds is due to my activity level so no plans to stop anytime soon. In fact I am getting faster on my bike which really builds me up mentally.
That’s so good to read . Re the gym thing , find something that weighs say 10-16 pounds and another that weighs about 5-8 pounds and use those as resistance weights to lift , I use big bags of charcoal and a small bag of cement . Lifting diagonally standing from left ankle up to above right shoulder x 10 and then reverse . So many things we can use and far better than machines that just isolate a muscle rather than engage the whole body in the process. Even picking up and carrying paving slabs is Awsome !
Good ideas, thanks, I have some of those things laying around. I do some yoga, pushups and situps and a whole lot if yard work like weedwacking for a couple hours in addition to this. Also some kayaking, so I try to build the core in as many ways as possible. Add in a full time job and keeping my teenager active and it comes down to having enough time to do everything so the seasons play a role in what I do most. Riding will start declining with shorter days but continue through winter and I should hit or exceed my goal for the year, an increase from my pre dx year by 600 miles.
You have raised a very interesting subject. I have become quite frustrated at my inability to be able to carry out any kind of work which requires physical effort. The lack of real muscle increases tiredness, so you have a double hit. You carry on doing things, but notice that you have to stop a lot sooner than you would have done before and it's not age related 🙄.
My oncologist was good about getting a treatment for osteoporosis, I have osteoarthritis also. I've always been slim and never carried a belly, but now, with man boobs and a belly it's just become an accepted side effect, but I still remain very active. I have heard that swimming is a very good way of helping build muscle, but I wouldn't know wether to wear neoprene or a bin bag to cover all those odd bits that have come with the treatment 😂.
I really hope that things take a turn for the better for you and your husband.
I'm with you on this. The onc is treating the cancer and all the side effects eg muscle loss, bone thinning, visceral fats, brain drain are up to us to solve. Diet, supplements, muscle strengthening are a solution but we are on our own. Being on ADT for 2 3/4 yrs and 76 yo it has taken its toll but thankfully I am able to do everything I did before but at a slower pace.
I was DX at 53. Been on Lupron 3 years now. Zytiga 9 months. I have not had significant issues with muscle loss and fat gain. I do weight training 3 times a week. Each day we tackle a different muscle group. I golf once a week and do walks with the dog. I make sure my protein intake is very high. I try to keep my daily intake around 180 gr. I am 215 lbs. I find daily Creatine helps also with maintaining muscle. I get a better pump when lifting. I also take Calcium daily.
I realize I’ve only been into this for three years which isn’t long compared to some of you, but so far so good. My only complaint is the muscle loss between my legs.
I can’t speak to your specific experience, but I am truly sorry you both are going through this. Thank you for being vulnerable and sharing your truth. I’ll know to watch even more carefully if he gets switched from Lupron.
In addition to Lupron, he’s on Zytiga with Prednisone (with great results, so far!) I did so much research on my own that Joe knew to keep exercising-even if his jog now looks like a bit of a walk :).
He takes calcium and vitamin d (with K2 for absorption), and is doing very well -especially for a man with stage 4 metastatic PCa.
He’s lost some of his muscle tone, so we moved a stationary bike into the living room so he can peddle while he watches the news. He’s got some 20 lb weights to flex with at the same time.
We both know his will never be the same body it was before his diagnosis, but that’s such a small part of who he is, we’re adjusting. His kindness, his humor, his tenacity far outweigh the loss of a taut butt (and other oft-appreciated body parts ).
Having him alive and by my side- night and day- for as long as it lasts- is plenty and enough.
You have my sympathy - I get it - I chose to quit my first round of ADT due to the numerous side effects.
I've had a BCR, so I'm due to the next phase of treatment, with a different form of ADT on the slate.
Some forms of ADT (Lupron) appear to affect (adversely) patients more than others. I don't know if you can predict who and what, but it's a fact of treatment.
I've been fortunate enough to get (via consultation) some information about ADT that 'everyone' needs to be aware of.
You should consider an anti-depressant to help manage ADT. In addition, it was stressed that exercise must be incorporated into your ongoing 'survival' strategy. IF you can't do it in a more conventional way, you'll need to be creative.
I like the idea of doing it while reclined / in bed. It's better than nothing and will make a positive difference. (LIFEonADT.com - the book, refers - the author would have liked to point this out in a more dramatic way to get the message out, loud and clear.)
Here I go. 12/2015 prostate removed, 9/2018 informed of lymph node metastases, immediately given Lupron (at six-month intervals), and immediately started radiation treatments (40). At end of last month, could not pick myself up off the floor. In early August, finally started working out on Total Gym, which was purchased years ago and just sat here collecting dust. Had to start at the lowest setting possible. I do the starter workout every other day, and on the off days do 30-35 minutes on stationary bike. Overall, PROGRESS HAS BEEN SLOW AND DIFFICULT, but one month into the process I feel better and have started to noticed improvement in muscles and cardio stamina. Plan is to stick with this process for as long as possible, and realize it will not be easy and progress slow. Guess I cannot complain. Hope this helps someone.
Lordie, one has to take responsibility for one's own life and in your case, your husbands. Do not blame the docs and other medical workers!!!!!! There is a huge amount of data now on the various side effects etc. so you need to get up to speed on your own time.
Sadly, our medical teams are short staffed and overworked and are NOT babysitters!!!!! Nor should be expect them to be!!!!-that is my gripe about people who complain about poor medical information etc.
You have one guy to look after, they have thousands!!!!!
Your husband has a very serious illness, advanced prostate cancer!!! Its treatment comes with some very serious side effects-that is life!! Do NOT spend all of your time in attempting to recreate history madam, accept his serious condition and live with it, as best as you can. He will NEVER go back to who he was prior to getting APC and all that it brings into one's life!!!!!!!!
Live large, live happy, and learn to live with his cancer and do NOT sweat the small stuff.
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