Muscle weakness on Lupron/Zytiga - Advanced Prostate...

Advanced Prostate Cancer

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Muscle weakness on Lupron/Zytiga

bean1008 profile image

Lately I’ve been having awful weakness in my legs…l’ll get down on my knees to do something and I can’t get up without grabbing onto something to pull myself up. Is this normal for one or both of those drugs? Kind of worries me that my mobility could be affected. Thanks!

105 Replies

I'm not on ADT, but at 68 I've noticed getting up from the sofa is getting difficult. I've seriously focussed on leg workouts at the gym. I warm up with 100 deep knee bends. I'm doing lots of reps, light weights, and very full range of motion. I bought longer sofa legs on Amazon and put plywood under the cushions.

bean1008 profile image
bean1008 in reply to Tall_Allen

I hear you, TA! I wondered if it might be that I’m getting older as well. Getting off the sofa is getting harder and harder! My hubby reminded me tonight that I haven’t been getting out for walks like I was in the summer…I need to get out and do some hills and see if that helps!

Spyder54 profile image
Spyder54 in reply to bean1008

Bean, I try and get in 30 minutes of yoga each morning (never 7 out of 7🤔). But man, at 67, it is much easier to get down on the mat, than it is to get up from the mat. What you describe seems normal to me?Mike

monte1111 profile image
monte1111 in reply to bean1008

I've never seen a hill I couldn't drive around.

j-o-h-n profile image
j-o-h-n in reply to monte1111

Not if her first name was Faith...........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/30/2021 9:50 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

Just gotta get rid of that McGraw dude. Does that sound like a cartoon character or what? I'm sure he's a wimp. I may need to borrow Kaliber's hammer.

CAMPSOUPS profile image
CAMPSOUPS in reply to monte1111

Must be an inside joke. I feel like the odd man out. Of course I use the word man loosely. Am I an oddly man or mainly odd or I guess all of the above.

As far as not being able to get up it was a shock when I first had it happen to me.

It was one of those " glad no one can see this " moments.

monte1111 profile image
monte1111 in reply to CAMPSOUPS

I don't think I'm supposed to mention Kaliber's hammer ... Yayahahahaya yayahahahaya. Lots of odd, ahem, men here. Lots. I couldn't turn my head to see if anyone was looking. Tramadol really helped my back issues. I can get up fairly easy again. I'm thinking of ordering a trampoline. Of course I couldn't get a gallon of milk open just a few minutes ago. Cats were running everywhere going "What's the matter? What's the matter?" Son opened it just like it was nothing. He could have at least pretended he was having a hard time. I don't deal with humiliation well. Certain persons here take great glee in humiliating me.

CAMPSOUPS profile image
CAMPSOUPS in reply to monte1111

A little while after my chemo tx and when adt had fully kicked in I determined I was still very good at 3 things:

Driving the car.

Working at my desk.

And sitting on the couch.

Yea I cant believe the loss of finger/hand strength along with the rest.

Celebrex has made it so getting cap off the water jug doesn't hurt when I try but I have to give up and get a pair of channel lock pliers to accomplish it just the same.

Always disappointing to see my wife twist off caps like there is nothing to it.

monte1111 profile image
monte1111 in reply to CAMPSOUPS

I' m sure your wife is superwoman.

monte1111 profile image
monte1111 in reply to CAMPSOUPS

I should put a pair of channel locks in a kitchen drawer. Maybe in the scissors drawer. j-o-h-n suggested a scissors drawer after I ranted about never being able to find scissors when I needed them. See, this is a very helpful site.

CAMPSOUPS profile image
CAMPSOUPS in reply to monte1111

lol. Yea have to get our priorities straight ha.

CAMPSOUPS profile image
CAMPSOUPS in reply to monte1111

And although this post was about the weakness from adt my adt brain just got it.Faith Hill and Tim McGraw.

j-o-h-n profile image
j-o-h-n in reply to CAMPSOUPS

You're right.......I open all bottles with my teeth..... big wide ones are a bitch.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/01/2021 8:39 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

I uusseedd ttoo jjuusstt bbiittee tthhee nneecckks ooffff. BBuutt nnooww II ssttttuutteerr.

j-o-h-n profile image
j-o-h-n in reply to monte1111

I'lllll buyyeeee thatttttt

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/01/2021 11:20 PM DST

j-o-h-n profile image
j-o-h-n in reply to monte1111

You don't need the Hammer's hammer..... just Tug at and pull down that cowboy hat he wears over his eyes.... and hit him in the head with his guitar (break his guitar, you'll be doing his fans a favor).

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/01/2021 6:18 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

Ya Gotta Believe. I wonder if he has male pattern baldness. I think he might lose all of his fans to Billie Eilish if he took his hat off.

j-o-h-n profile image
j-o-h-n in reply to monte1111

Unfortunately for her not his chink fans........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/01/2021 8:36 PM DST

monte1111 profile image
monte1111 in reply to j-o-h-n

No comment.

Lulu700 profile image
Lulu700 in reply to bean1008

Hey bean! During imrt I was so weak I couldn’t get up or even put my own shoes on . My wife became my caregiver at 53 yrs old I was . One hell of a wake up . I got stronger . So can you 🏋🏽‍♂️

Lulu700 profile image
Lulu700 in reply to Tall_Allen

Genius! Longer sofa legs . Dam I m thinking of how I can raise mine? The tendon and ligament light weight work out is optimum for us with no t also . Good day !

Tall_Allen profile image
Tall_Allen in reply to Lulu700

I put on 12" legs because I'm tall, but they come in all sizes, colors and styles. My old ones screwed off and it was easy to put the new ones on. Easier to vacuum under too.

amazon.com/s?k=sofa+legs+12...

I also put ¾" unfinished plywood on top of the box springs on my bed, and underneath the seat cushions of my sofa. I paid the lumber yard to cut it to size. I find the added firmness much more comfortable, and easier to get off of.

Lulu700 profile image
Lulu700 in reply to Tall_Allen

Both are good . I once raised up my elderly mothers recliner a foot with a wooden box ,so she could get up . Comfort is everthing at home . ✌️👏

Yes it is.You can force some core and leg exercise which WILL help.

Get all the sleep you need.

Carry a walking stick at all times.

Check with google.com/url?sa=t&source=.... To check if you can qualify for their program. I am graduate. It works.

2Dee

Lulu700 profile image
Lulu700 in reply to 2dee

Walk softly , but carry a big stick ! 😂👏👏

I’ve been on Lupron and Zytiga for 4 years - since I was 56 and very fit. The first 3 years were ok but over the last year I have lost significant strength despite exercising. I can see and feel my leg muscles wasting.

Lulu700 profile image
Lulu700 in reply to andrew61

I’m six years in . What muscles? 😂🏋🏽‍♂️

andrew61 profile image
andrew61 in reply to Lulu700

Exercise helps but I think there is an inevitability about it.

Lulu700 profile image
Lulu700 in reply to andrew61

We know it!

I have Stage IV because a lymph node was seen on my MRI that indicated cancer with gleason 4+3, prostate totally involved. Started ADT Lupron on 11/15/2019 and RT 3/1/2020 45 treatments completed 5/1/2020. PSA initially 8.1 and as of 11/2020 PSA 0.0008. I've haven't been able to stand up from a kneeling position since,,,, without grabbing hold of something and pulling my self up or ask for help. Still on Lupron. Oct 22 2021 is my "last" injection then we'll see how that goes. However, my legs have gotten progressively weak over the last year. I can't walk over 10 feet without getting short of breath. I've fallen out in public once and had to ask someone at the post office to help me up. I'm 67 and was strong as an ox in Aug 2019; had been lifting weights and exercising 5 days a week. I can't believe how fast my muscles deteriorated especially the thigh extensor muscles. Days when I can't walk except like I'm over 80 and stiff legged and slow slow slow. It's demorlizing. I asked my oncologist about it numerous times and he just keeps saying it's the lupron and it will get better when we stop ADT. Is that true? Anybody know? my bone scan is negative for mets and has been except for that initial node.

Lulu700 profile image
Lulu700 in reply to Willrobinson

Danger! Willrobinson! Lupron takes us down . You need a break . I hope you can get one . It might Take a bit for your t to recover but it should and you’ll feel better . God bless you 🙏. I know how this feels .

It is a sad decline that you describe. I hope to avoid it but it could be coming for me at some point. I'll keep working out and do what I can. I exercise 3 days a week.

I've only been on Lupron, just came off it in July after two years on it and PBLN radiation. I'm 61.

I have always cycled 200+ miles per week but had to buy a electric assisted bike to continue riding once I went on Lupron.

I can't stand up from a crouched position without using my arms. I have trouble climbing stairs without pulling myself up with both arms on the handrail. And a afternoon nap voluntary or involuntary after riding has become the norm.

The seat of a bike carries your weight and I would have a leg give out if I tried standing on the bike say while going up a hill.

So the Lupron caused some weight gain which makes all this worse. Weaker body and heavier body compond the problem.

My recent testosterone still under 100 seems to be climbing at 10 points per week so far and I seem a little stronger on the bike but even more drained afterwards at this point?

Lulu700 profile image
Lulu700 in reply to TJGuy

Good luck TJGuy!

This is my husband's usual complaint to any doctor who asks. At 78, He is able to stationery bike 4-5 miles daily but can hardly get out of a chair. We added some metal push up arms for his chair, bed rail pull up and arms on the toilet which help a lot. He complains that he could no longer get up from the floor if he happened to fall. He's had Lupron, orchiectomy, Xtandi, Abiraterone and daro.

Lulu700 profile image
Lulu700 in reply to Grumpyswife

Dam good for 78 . Grumpy is a lucky man to have you as his wife . He is blessed . Thanks ! 👏👏👍

You need more exercise. It’s obvious to say, but still important that you believe it. Men are fond of referring to what they used to do. That is meaningless now. The same amount of exercise we did last year, before diagnosis etc isn’t nearly enough when on ADT anyway.

The weakness is only one of a long list of problems that await us if we don’t rigorously, regularly intervene.

Lifting weights is critical, non negotiable. It is at our advanced age anyway, but ADT makes it more so. It is essentially accelerating aging.

Train the legs! Even guys who do lift pay too little attention to the lower body. Legs deteriorate in size and strength with age, but ESPECIALLY in men. With or without disease! This tells us what we need to know.

If you’re weak down there, start with very light weights or body weight only.

ADT is, as my MO put it, ‘just bad’. Effective but at quite a costThat is depressing to some. The side effects can be rough. Yet there is good news. Exercise is one of the very few things we can control, and it makes the biggest difference.

Yeah well....i work 6-10 hrs a day as a carpenter ...my muscles have deteriorated 70 percent ...the lupron/ earleda is the culprit....4.5 years..last thing i want to do is cycle...lift weights ...ive use some rubber bands....for some arm resitance...it effects evryone ...i am jealous of the 2yrs and done group....

harryb48 profile image
harryb48 in reply to Boywonder56

I hear that! I am 73, been in the trades all my life and have been on Zytiga and Eligard for 2 1/2 years. I find myself doing something that takes most of my strength and remember doing the same task with little or no physical strain.

Boywonder56 profile image
Boywonder56 in reply to harryb48

Well im 65 dx apc at 60....has kicked my ass since 6 mos in. Like ive posted b4 i could tote 4x8 panels plywood no problem...and swing a 24 0z hammer...now i work smarter ..not stronger...but its ni fun🤪...i dont think the guys that "work out "constantly were blue collar....i know construction wears u out but throw adt in to the mix and fatique has a whole diiferent meaning. I donot get on floor...wich is nec to build cabinets without a crutch of some sort...word in the trade used to be " howz ur hammer hanging"....thats a real laffer now......peace ...good health....and pray to whomever this country doesnt go down the sh@#$ tter b4 apc does us in......b.w.

I've started bench pressing sh@#$tter's.

Watch out thr lid will hit u in da head.....🚽

Been there done that. It's the 90 degrees into the bathtub that will really get your attention. Especially if you're still peeing.

Lulu700 profile image
Lulu700 in reply to Boywonder56

It is going down . Keeping our heads above the water will be a miracle! Hang on baby . This decade is going to get rough . 😩

harryb48 profile image
harryb48 in reply to Boywonder56

Yeah, I used to kid the guys with pneumatic nailers, now I own some. That big straight claw kicks my butt. Used to carry a bundle of shingles on my shoulder up a ladder and think nothing of it, shamed the hell out of the young guys, not any more!

Boywonder56 profile image
Boywonder56 in reply to harryb48

Man thats the truth.....carrying 30 ft ridge beams....hemmoroids were a honor badge.......driving 16p with 2 wacks.......

Lulu700 profile image
Lulu700 in reply to harryb48

What once I could do in two hours ,will now take me three days and still I might not complete it . Any man able to work after dx he’s my admiration . Amazing . I can’t

Lulu700 profile image
Lulu700 in reply to Boywonder56

Hey boy wonder! Two years and done doesn’t happen for an advanced guy . I’m over six years in and no one has ever mentioned to me a adt break . I. With ya ! I’m 80% gone myself . Life with APC is suffering . We’ve got to look for good in this world ! 👍🏋🏽‍♂️

Boywonder56 profile image
Boywonder56 in reply to Lulu700

Theres good....they just try to cover it up with bs.....hang tuff lu

Lulu700 profile image
Lulu700 in reply to Boywonder56

Hang tuff! 🏋🏽‍♂️

I was nearly immobilized for the first 6 weeks on Eligard. I Started Zytiga 6 weeks after that. I’m about where I was before treatment. I walk allot and like to test my balance on boulders over streams….scares the shit outta me but I feel very rewarded. Before COVID I swam an hour 3 times a week indoors in winters and now everyday in summers. Also use rubber cords on low output days ….as an aside yesterday I had to climb a ladder balanced on a mountain ash to ‘prune’ it with a chain saw who’s branches were demolished by starving bears after a berry crop failure in our British Columbia mountains. It was a shock as I barely cut through the first of many branches. It was clearly my cardiovascular lagging my ambitions. I’m of the mind that PC usually strikes commensurate with normal geriatric decline as do so many other coincidences in a lifetime of misinterpretations…it’s the old story of causation vs correspondence.

Keep fighting by doing your best to help those around us and consider the planet we leave behind us in our wake.

Wonderful hearing all of your stories and suggestions! I know I should probably join a gym again… But it will be a completely different experience than in my pre-PC years. I guess there’s a bit of pride involved…I don’t want people seeing this slightly chubby old man that can barely lift any weight! 😉We don’t have any space in the house for a home gym but we do have a stationary bike…one of those fancy ones. Last time I tried it I had problems with dribbling but if I wear a heavier pad I can get through a session. Best wishes to all!

WSOPeddie profile image
WSOPeddie in reply to bean1008

The gym I go to has all those weight 'machines'. They don't see what weight you have dialed in so no embarrassment factor there that I can see. Just do it. I hope you can find one near you. I go three times a week. Something to do, gets me out of the house, and I can socialize with some of the fellow geezers I see there.

Mormon1 profile image
Mormon1 in reply to bean1008

I push a shopping cart at Aldi on slow hours. Has really helped me. No one suggested it

I started on Lupron & Bicalutamide late December 2020 3+3 with 2 Lymph (1 distant). 44 IMRT and second shot was Eligard. PSA <0.05 ng/mL now but MO wanted me to try low dose Zytiga. I had so many SE that my daughter DEMANDED that I stop Zytiga.

Lulu700 profile image
Lulu700 in reply to VCinTx

She loves you !

I'm on Xtandi and find that my legs are getting weaker and more tired. I walk6 miles every day but unlike when I was younger and running 6 miles a day I don't feel I'm seeing any improvement in my stamina or strength. I'm 80 years old and was diagnosed with advanced metastatic cancer a year and a half ago. Up until that time I was at the gym every day and felt good. Then one day, I couldn't pee and that's when it all began.

I had the same . One day I couldn’t pee. That was over six years ago for me.How long ago was it for you , Sir?

A year and a half ago. I was in agonizing pain one night as my bladder filled up. Finally I went to the emergency room and waited over an hour, as the pain got worse, for a doctor to come in to give the nurses permission to catheterize me. What a relief. However, the nurse who did it was inept and the next day I was leaking so I went back to the emergency room and had another catheter inserted. That was on Sunday. On Monday I called a urologist. He scheduled surgery on a the following Monday and told me to come back on Wednesday after the surgery at 2 P.M to remove the catheter and see if I could pee on my own. He squirted some water up my penis, which was painful, and when the water came out he said I could now pee. I went home. That night my bladder began to fill up and I couldn't pee. Excruciatingly painful. Back to the emergency room. Dropped that doctor. Wore the catheter for 66 days. Had a new doctor who showed me how to self catheterize which I've never had to do. Began to pee on my own.

I can relate dear Sir. I m a sublime fool. I pushed trough urgency to pee for many years. My uro told me that I had this for many years to get to that point. A stubborn male mule. Super bowl 2015 I stopped peeing . Held out until Monday and saw my first urologist. They inserted a foley and the young tech said” welcome to the golden years ”! I was 53 . I went into k failure under this docs care awaiting a biopsy. Self cathing until K failure. ICU a week . I emerged with bi lateral neuphostimy bags and a foley for almost two years. It was hell. Given a 50/50 chance to survive it . Doc said if I was ten years older that they wouldn’t even tried it because I wouldn’t survive it “ a dismal review.. the good news for me is my girl married me and has saved my life by given me love organic food and caretaking me in my darkest hour. She is the only reason I’m here . My bladder and urethra were blocked by pc tumors. Imrt Lupron and another adt put me into a clear status for over five years no. I’m plagued by osteopenia and djd wrecking my joints with pain . I’m lucky to be alive . Your misanthrope name reminds me of a netflick movie “ the ballad of Buster scrubbs” I recommend this twisted view on western life . Very funny indeed. I have a story of the er and them attempting to insert a catheter for over an hour and a half . 3 people tried over and over To jam one in. Pure hell . before they called a dr to administer lidocaine . Slid right in. I cried” why didn’t you try that hours ago”! No reply . Let’s stay out of the hospital ? Take care

Sorry for your distress, Lulu. It's a helluva a life. I should have had my prostate checked years before the night I couldn't pee. I just assumed it was part of aging. It's said we have wars so we can learn about geography. It seems to me we grow older so we get to learn about medicine. By the way, I find a couple of Ibuprofen before I go to sleep helps me sleep and relieves a lot of aches and pains. Feel good. Oh, look up Nightbird on You Tube if you haven't already seen her.

I thought the same . Normal mid life stuff . Thanks , I’ll look up nightbird . 👍

Joecarver profile image
Joecarver in reply to Lulu700

Amen same experience here, I was screaming with pain, but er had to do blood work first. I Screaming just do the catheter first, took almost 2hrs of the worst pain ever.

Lulu700 profile image
Lulu700 in reply to Joecarver

uremic poisoning ain’t no joke. 😳Hope to never feel it again. 🤞

I can relate. I've been in 'retention', unable to pee and having to wait in the ER several times. It is very painful and panic inducing. You sit there helpless hoping someone will come to your rescue soon. Meanwhile you know the situation gets worse with every passing minute.

Lulu700 profile image
Lulu700 in reply to WSOPeddie

Brutal pain . Let’s not go back there again . Ok ? 🏋🏽‍♂️

Me too exactly

Hey bean , I did Lupron with Tak-700 (stops adrenal t) for 18 months . Lupron is stripping you muscle away . Thus the pain ,thus the weakness . I got hit hard due to tubes in back not allowing me to do much for those 18 months . Then the adt takes the teeth and bones . This is why we can’t roll up in a ball and not move . If you don’t stay active we lose it all . Adt strikes the heart as well . Eat heart healthy ..I’m running at about 1/4 of my original strength . On a good day . I hated the shots so much that I did the orch in 2017 allowing me to drop the Lupron . Our energy source t is gone . Get up moving on your worst days .. I fought lethargy and fatigue for three yrs . Now I’m on cruise control in the slow lane in second gear .. After a life lived in good health and with no fears of living large . Take time to smell the roses .. I hope that you can feel better and pull out of the hole .. Be well !

bean1008 profile image
bean1008 in reply to Lulu700

Thanks my friend! I’m curious if your strength got better after trading the Lupron for the orchiectomy? Best wishes!

Lulu700 profile image
Lulu700 in reply to bean1008

Not really! My bone damage already was done. Getting worse . Burning hands and feet. Muscle went first never to return.Skin and bones.I’m far from being the worst on this cite. It could always be worse. Live in the moment. I Can no longer gauge life by stength or stamina. I have neither. But I’m not in brutal pain . No place to complain . I’ve gotten up on the wrong side of the bed for over six years now. I’m over 6 yrs in. Hit 60 whoohoo! My uro said that I’d be long gone at 36 months . Wrong he was. Thank God! ✌️

bean1008 profile image
bean1008 in reply to Lulu700

Big hug to you!

Lulu700 profile image
Lulu700 in reply to bean1008

You too bean . This APC is one tuff s o b ..so we must be knarley dudes to live with this . Take care 🏋🏽‍♂️

Been on Lupron/Zytiga since March 2019. I've lost over 20lbs from sarcopenia and have had to use a rollator for ambulation since June 2019. I'm also dealing with 21+ years of a diagnosis of MS. I was using a cane to aid in balance prior to the cancer rearing it's ugly head. Last week I finally admitted to myself that for my own safety I needed to bring in a wheelchair to add to my myriad of ambulation aids. I initially blamed the MS for the fatigue and weakness, but now I think it's the Lupron. The docs say the only way to tell is to stop the Lupron. Not really much of an option for stage 4 metastatic. Best of luck to all in this less than pleasant journey.

bean1008 profile image
bean1008 in reply to Kentucky1

So sorry that you’re dealing with the MS on top of this. A good friend with it as well is waiting for his biopsy. PSA of 24…not good but could be worse. Best to you!

Lulu700 profile image
Lulu700 in reply to bean1008

Ms sucks 😩

Lulu700 profile image
Lulu700 in reply to Kentucky1

Hey Kentucky ! Love that rolling hills blue grass. MS ? Brutal . I’m sorry.

Dam sarcopenia is a bitch of a thing. Took me down . I’m sorry you’re hit so badly by it. I Saw my dad after he had an rp . Skinny as a rail. Man i felt bad for him. He died shortly after from the heart .. at 71 yrs old. That was 24 yrs ago . I Wonder if he looks down on me with compassion because he had this too? Take care ….Scott

Kentucky1 profile image
Kentucky1 in reply to Lulu700

MS does suck. I was holding my own for almost 20 yrs, then cancer decided to join the party. Hard to tell which one is trying to kick my ass quicker. Thanks for your words of encouragement. Keep on truckin', one foot dragging behind the other. LOL

Lulu700 profile image
Lulu700 in reply to Kentucky1

Belief in the big guy tells us suffering puts us closer to him . In this we are blessed .. ya got to keep on truckin! We truck til the truck don’t go no mo . 😂🤙🏽

I had significant knee weakness from Zytiga , never really found a solution except to lose a few pounds , hasnt got any better going on to chemo

Getting down is easy..... getting up is a FN bitch....I don't laugh at that tv commercial anymore with that woman on the floor yelling "I FELL AND I CAN'T GET UP"

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/30/2021 8:03 PM DST

Lulu700 profile image
Lulu700 in reply to j-o-h-n

😂. …

Boywonder56 profile image
Boywonder56 in reply to j-o-h-n

Theres a kris kristofferson song......

Lulu700 profile image
Lulu700 in reply to Boywonder56

Which?

Boywonder56 profile image
Boywonder56 in reply to Lulu700

Sunday morning coming down...

Lulu700 profile image
Lulu700 in reply to j-o-h-n

Get down on it. Kool and the gang.

I was probably 4-years into ADT and 2-years on Zytiga (late 50s). When I would get on the floor to do something, I had to find a piece of furniture or a wall to assist me in getting up. It’s unfortunately just part of it…even though I was exercising as much as I could. I’ve been on a holiday for about 20 months and recovered my strength to get up easily…but my holiday is about to end…so here we go again.

As everyone says, exercise as much as you can. And find simple things like Tall suggests to help make life easier.

Hang in there!

James

Keep us posted hows it go post vac.....many of us would lije to try but have been forwarned......

Good luck James! I know I have at least another year to go on this regimen but hope there’s a break someday!

No advice. Just a comment or two, bean1008 I am on the same meds and started out strong and agile.

I went from bulging biceps, broad shoulders and big neck to loose skin everywhere.

NO energy so I just have to keep going at whatever task I have in front of me, taking frequent breaks, until the job is done.

I do a little walking in the neighborhood and make it a point to use the upstairs bathroom as much as possible. Running up and down the stairs is a form of exercise. It seems to be helping keep my legs, even though they are much thinner, in pretty good shape.

The old saying is "Use it or lose it."

bean1008 profile image
bean1008 in reply to diamondrn

Thanks so much…sounds like our house and neighborhood…lots of stairs! Bought house 20 years ago and I thought all those flights of stairs (30 steps to the front door then a three story house!) would help keep me young. We’re talking about looking for a single story house but maybe all those stairs are forcing me to keep moving!

Lulu700 profile image
Lulu700 in reply to diamondrn

Loose skin? How about hanging skin ? My skin looks like a hundred out old turkey plucked.

diamondrn profile image
diamondrn in reply to Lulu700

Lulu700, I was being nice to myself when I said "loose skin."

"Hanging skin" would definitely be more accurate for the back of my upper arms.

My grandmother's weren't much worse.

bean1008 profile image
bean1008 in reply to diamondrn

Oh joy…I have my grandma’s flappin’ arms to look forward to! 😉

Lulu700 profile image
Lulu700 in reply to bean1008

Well bean ! Lift some weights 3 times a week ..The truth is that energy and drive are halted with no t .. but Thats just me . I used to be Joe gung ho . Now I’m Joe no mo mo Joe . I still love life ..mostly .But i had many a day that I did not . I had not suffered much before pc . I’ve learned mucho . Take care

Lulu700 profile image
Lulu700 in reply to bean1008

I’ll send a pic of mine so you do get them . 😳🤙🏽

Lulu700 profile image
Lulu700 in reply to diamondrn

I’m in the grandma syndrome big time myself . No nuts little bitty titties , a real beaut ! I was pretty strong before . Had big ol biceps . Now just hanging chad . My skin is looking like some ancient battlefield . Keep our sense of humor and irony .

Getting ready for hockey season Bean. On Tuesday hiked 2 hours up a steep mountain, then 2 hours down the same steep mountain. I was ready to play! Wednesday morning needed barely understanding Spouse’s help to raise off the toilet. Had to crawl up and down the 10 steps to the main level of home. Thursday was even worse; contemplated just staying on the toilet. 5 years ADT. Having always being a horse leg wise the effect on your bigger muscles is dramatic. But life is fantastic. (I’ll be looking for a taller toilet though!!!).

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bean1008 in reply to Willydad

Boy I can relate… If I get out and exert myself and really push it I will find the next day I am a total lump of pudding! You really have to plan these things… My family and I are going to Disneyland on Friday for my birthday so I will be taking things very easy on Thursday to make it through the day!

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Willydad in reply to bean1008

Disneyland! Excellent. Have a happy birthday.

Hi Bean1008

Oh yes I can certainly concur with you on leg muscle weakness on that Combo.

I was 52 when I started ADT, and within a few months I had major leg aches, from just one flight of stairs.

What you say sounds very familiar

Same thing has been happening to me. I have been unable to pull or push myself from the floor or ground without holding onto domething or someone. Tell tou what I learned. Get s oximeter. $20 at Wallgreens. It measures your breathing and pulse. Seem whe I exert myself my pulse increase alot. fda.gov/medical-devices/saf...

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bean1008 in reply to Mormon1

That’s a great idea! I could add that to my blood pressure and blood glucose monitors. Maybe I will start a home business checking vitals!

I feel for you guys that have been on ADT for 4,5,6 years or more. Also those with a demanding physical job. I don’t have experience with either.

However, I do notice that many of us developed sarcopenia early, in the first several months to a year. That is a little harder to understand, given what we know-or should know-about these drugs.

I’m convinced the only reason I had no problems and lost very little strength, fitness and mobility in my 18 months on ADT was my dedication to maintaining my habits up as much as I possibly could. It was challenging no doubt.

Significant loss of strength I absolutely could not abide; I lost some of my cardiovascular endurance, but it was a necessary trade for the time I had to put into the weights.

So much talk of what we used to do makes me sad. I can imagine it gets tougher down the ‘Lupron for Life’ road. Yet what choice do we have? We must press on even with loss of fitness and strength or we are doomed.

I started increasing my focus on maintaining strength even before I knew I had Pca, just seeing what aging was doing to my legs alone.

I have vowed I will not give in to the fatigue and keep up my workouts no matter what if I should have to return to ADT. It’s been a year off it and admittedly life is better in every way.

Yet I can’t know if I will succumb to the grind of fighting the ADT if I have to go back. Especially at 75+ years. I just don’t slow down or cut back NO MATTER WHAT because when you’re older it just overtakes you so quickly. I have a healthy fear of that I suppose.

Still, I throw no shade at anyone. Lupron, Zytiga, chemo and radiation concurrently couldn’t get to me at all, but I can’t yet know the worst of it. That comes with the years that some of you have put in.

My guess is that I will stay with the long cardio, HIIT, yoga, punishing workouts and the rest no matter what, as long as I feel I have a life worth living. At this point it’s more than obvious that hard exercise is what it takes to keep it that way.

But I can understand how it can wear a man down.

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bean1008 in reply to London441

Great post, London…thanks so much and best wishes to you!

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