Hi all, it’s been a while that I posted but I was wondering if any of you could help me, I’m asking in regards to my dad, my dad has been on xandie for 13 months now and is keeping his psa down, how ever over the time he as been struggling to walk but it is getting worse, how he explains it is a severe weakness like his legs won’t to what he wants them to do, he is going to the nhs gym to try and build up his strength, how ever I’m wondering if it’s all a mental as my dad isn’t the strongest of men mentally, have anyone of you experienced this and if so how did you help the problem? Thank you so much in advance iv been down every avenue and even his specialist can not understand what is the problem.x ps he as no mets in his legs only in his upper body
Severe weakness in legs : Hi all, it’s... - Advanced Prostate...
Severe weakness in legs
That would be an extreme side affect from xtandi but it is possible.
My dad is convinced it’s the xtandi and so am I, his specialist halved for 3 months and no difference in his mobility at all, she doesn’t seem to think it’s the treatment and won’t try and switch it to zigra, all I know is he can not live like this as he feels good in his self but it’s now making him very low mentally, would you recommend asking again to switch or would it have the same effect? Thank you for your reply x
It good to remember that a lot of the side effects aren’t necessarily caused by the drug itself, but what the drug does to your body. Men are made to have certain levels of testosterone in their bodies , adt treatments block that testosterone which feeds the cancer. Loss of testosterone has its own side effects ( fatigue , hot flashes , weakness , muscle loss ) … any drug that blocks testosterone would have some similar side effects. You can Google “ zero testosterone symptoms “ for a lot more information.
Also, there are numerous mood enhancing / depression lifting drugs available for guys like us, numerous group members swear by them. I’m not using them ( yet ) but maybe someone will get on the thread and name good ones for your father. Mind is just as important as body when dealing with APCa.
Just say’in
Yes i do understand with out a good level of test a man will have massive side effects, my dad is on a mild antidepressant but I think it needs to be adjusted, I’d be interested to see what men recommend and if it’s helped their mental health, the mobility is adding to his mental health so much as like you he was playing squash up until diagnosis, my dad had just turned 69 yrs old,it must be so incredibly hard to live along side, I know how it’s effected me let alone be living with it, thank you so much for all your thoughts it’s most appreciated, I do hope your well x
Some get hit hard by adt . I did . No t is a weakened state for us .
Before Dx, I was totally fit, work out and lift weights. After my RP, my legs are so weak even before starting ADT. I can’t get up from the floor without holding on something. This is a mystery to me that I wish I knew the cause of it.
It’s just so frustrating isn’t it, when he gets up from a seat it’s like he can not find his balance,it’s so upsetting to see, are you still like this with your legs, do you use a walking stick? My dad needs to as he feels he is going to fall over x
I don’t use anything. I just feel it when I am on the floor playing with my dog. I am not sure how old your dad is, but balance, I think, and weak legs are two different things. My balance also is no good since my dx. I try to work out but life gets in the way and get lazy. Excerise is very very important
A few percent of people , a small percent ….around 10%-12% , some say less …… experience the “ adt “ zombie effect of Xtandi …. I have to say I’m one of those that experience the extreme side effects. I’m severely impaired by Xtandi , the “ zombie “ effect and my lower body is extremely weak. I can’t stand up straight or walk more than 20-30 feet without experiencing extreme exhaustion, knees buckling, out of breath , face red and bp skyrocketing to 215/110. That and the adt combination I use …..Lupron Xtandi Zometa ….all add in additional heavy unpleasant side effects as well. Yea its extreme for sure ……but …. On the up side , my first offer of care , the day I was diagnosed was inpatient hospice, the doctors thinking I had a few weeks left at best but likely death in a couple weeks. Adt has given me 33 more precious months of life and I feel like I’m good for , probably, 18-24 more ….at least. It’s very subjective to everyone of course, but I gladly experience the zombie side effects to have a few more months of life. My will to live is very strong.
Sooooooo …. I employ what I call “ work arounds “ to try to keep some sense of normalcy in my daily life. I can’t hop up easily to go to the bathroom , so I keep jugs beside my couch and my bed. I have several office chairs at key places in the house and I get into one and whizz around the house pushing myself with my legs and hands where possible. I have a wheeled transport chair for short outdoors locations where a power chair isn’t the best choice ( wifey pushes me ) and I have a really kewl e-trike that, with motor switches , doubles as a power mobility chair.
I frequently, couple or more times a week , drive the e-trike out on the extensive local network of hike and bike trails. An average trip is 18-24 miles … the trike can go 20mph for three hours. It’s like an electric moped that is legal on street bike lanes or the fancy trails. I routinely hop on the trike and drive up to a shopping center that is about a mile from here. I drive in the bike lanes faster than most bikes ….then when I get up to the market ( ok …. liquor store yayahahahaya) I switch down to mobility cart mode and drive up and down the isles of all the drug stores and supermarkets. Easy breezy.
It’s strictly anecdotal, but there is some line of thought that says the adt zombies have longer, better, responses at keeping their psa down….the extreme side effects being an indicator that your body is unusually sensitive to the meds. It’s certainly true for me.
So, yea, I have the problem , and this is part of the ways I shine it on and keep on , keeping on . In my world, iceberg be dammed, I’m gonna party with the band until the whole ship goes down. Yayahahahaya yayahahahaya.
Just say’in ❤️❤️❤️
You are my hero and inspiration Kaliber. 💪💪🙏🏻💕
Hmm...Brother K, I thought that you "lost" those wheels last year!
New and improved model?😎
Best
You might be thinking of my fat tire off road e-bikes or my Harley dyna super glide. Had to sell those because mets to bones and adt bone loss made them dangerous to ride. Oncologist said it was too risky. That e-trike in the picture has two wheels in the back, one in the front. E-trikes are different from mobility carts in several ways. They are like three wheeled electric mopeds ….they drive on the streets in bike lanes at 20mph and do that for three hours. Mobility carts are regulated to 5mph max. My e-trike has switches , like gears…. Flip the switches and it converts to driving suitable to drive up and down supermarket isles , shopping centers and drug stores. ( don’t forget liquor stores of course yayahahahaya)
I got it a couple years ago when adt zombie took away my ability to walk and crippled me. It doesn’t fit well everywhere tho … I also have one of those collapsing 4 wheel transport chairs that the hammer pushes me in when necessary.
Does it have room for 2 (maybe on your lap)?💃
Yea it does …up to 500 pounds , some models have dual seats like a motorcycle. But ….. mine already has 2 people on it when I’m driving ..not room for three yayahahahaya yayahahahaya. Anything I like ….motorcycles, e-bikes ….this e-trike …. Hammer automatically hates and would never ride on any of it anyway. That’s the name of that game. Forgettaboutit …yayahahahaya
Just say’in…
This is great, interesting thought isn’t it, about excess side effects I have read this, why some men can tolerate it more then others and how some men are crippled by it, the pic is great x
I won the side effects lottery … seems like. So many guys here … most in fact …cruise along with just a fraction of what I have to put up with. It seems quite variable in men tho. Wifey “ the hammer “ says she’ll get be mad and kick my hind end if I croak , so what you gonna do. Yayahahahaya yayahahahaya 😂😂😂😂
I have what i call heavy legs....i know its the lack of t and the erleada wich permeates the blood layer of brain...cann also be from some spinal compression as i have stablr met in l4/l5...im in kals camp and feel linke a adt zombie ...
Yea … all those huge Superman leg muscles get heavy ….Yayahahahaya ya
Just say’in 😂😂😂😂❤️❤️❤️
Can I ask what exercise he previously did if any. I had similar effects for a while. I decided to push hard and walk only 2-3 miles everyday 7 days and now I feel great and gained my mobility back.
Hi there my dad played squash and was very fit walked miles, he still walks his dogs daily with difficulty, the problem started about 3 mo this in to his treatment xtandi wand has really as juat got worse he is at the nhs gym to try to build strength my dad is 69 yrs old I’m open to any suggestions at all to what to do, it’s like he needs to learn to walk again it’s crazy the impact this as had on him, thank you so much for reply xx
Hi Jack,My old man is in a similar boat, except he has pain also. Any specialists we have spoken to say it ls degenerative but it seems to have come about since we started xtandi and gotten worse since he had prostate radiotherapy. He has been prescribed Lyrica and morphine but this doesn't seem to have helped either.
Bizarrely as he has now started chemo and been prescribed dexamethasone and prednisolone with this, he said the pain has gone which further reinforces my view it could have been down to the xtandi. The loss of muscle mass is insane
My dad as pain in his knees to dad been on murphine didn’t help at all, so what are the drugs your dad is on now then, ? Isn’t it awfull to watch when they feel so good in their self but can not walk xx
For the pain he's on pregabalin and morphine but he said that doesn't seem to be working. But because he's recently on chemo, they put you on dexamethasone briefly for a few days before and after your chemo infusion and then prednisolone afterwards and he said for the pain, these seem to have worked wonders. I can only assume its because they're steroid medications. It's quite nice to see him a bit uplifted to be honest because he's gone from walking up steep hills with me to walking with a stick all in the space of a year!
Same just the same, it’s heartbreaking, other then that my par feels really well if only and when we can get him walking better. All the best to you x
All the best to you as well mate! What have they prescribed to your dad for the pain?
What is his age? If he is around 80 or older then muscle building is a very slow and difficult process. Yes, stopping testosterone has a major impact on muscles. One loses muscle particularly in the lower part of the body i.e legs, thighs etc. It is very roughly estimated that one loses at least 15-20 percent of strength in the legs even with walking and doing other weight supporting exercises. Muscle is very difficult to build without testosterone. The older one is the worse the situation. However, one needs to keep on walking and keeping weight on the legs otherwise one will lose much more muscle and strength.
69 yrs old just turned no problems at all before taking xtandi, but his specialist keeps saying that it isn’t treatment obviously it will make you loose mucel mass but she won’t say much else and she has been amazing with my dad xx
Good at that age there is still some chance to keep the muscle loss down though upto 15% will happen anyway. I had Gleason 5/5 but contained with one ECE and seminal vesicle invasion. Got RT and have been on ADT (Firmagon) since Jun2019. I walk 5 km daily 5 to 6 days a week, play 3 rounds of golf (18 holes) and do exercises and light weights. That has kept my loss in strength to around 15%. I am gauging this indirectly from my loss of 15% distance traversed by the ball while playing golf. Only solution is to workout as much as you can even to the point of pain.
I have that on Lupron and Xtandi. I've collapsed a few times. Gotta walk more.
Has he tried raising his legs when lying down? This may help to reverse the blood flow from the feet and calf muscles. My onco recommended this and it works for me but I am not on Xtandi, just to be clear.
I do get this heavy legs syndrome once in a long while especially during my chemo cycles. I am on my second challenge of chemo after the first in 2018. All's well, and I try to stay positive and Happy. Also I try not to think of what I am going through, I know its easier said than done. I let the medication do its part while I help it along by taking walks and getting involved with my house chores and playing with the grandchildren when they drop by.
Also bantering with the missus nudges me in the right and healthy direction. She is very positive and does not allow the burden of the disease take over our beautiful lives.
My very best to you and Dad
❤️
Haniff
Lovely to hear your positivity. I keep trying to tell my dad to break though and beat this feeling hard I know, but it’s like he as just gone with the flow and made everything with his mobility worse xx
I understand
Don’t give up on him, keep motivating him, you’ve got this 💪 and we are all here to lend our support.
Take care 👌
Haniff
I know men that have same problem. I also take xtandi as a stand alone therapy for 5 years now but take a vacation from it every 6 months for about 1-2 months to rebuild my strength. Psa jumps but always comes back down. I use a stationary bike 3 times a week and light weights once a week. It's definitely an xtandi problem
Jack
I have exact same symptoms. Xtandi + Lupron. Only thing that helps me is walking. Even with that,weakness is always noticeable
Good luck and keep trying
I have felt some leg pain but not to the point of being severe however it never existed before adt and Xtandi. I am trying to walk more and it does help. If he’s on a statin (he should be if on adt and Xtandi), the leg pain or weakness may be attributable to the statin. Discuss with doctor and try another statin formula.
You say his Mets are in his upper body, just a thought here is that if he has them in his spine area they can be affecting his ability to walk.
The PSA is dropping when on Xtandi that means the Pc is still sensitive to anti-androgen drugs. I would suggest you can switch to Casodex which has less side effects.
He needs to exercise, daily. What he used to do is irrelevant now, the drugs see to that.
All other solutions help to varying degrees, exercise much more so.
Hello my husband fell the first morning after his LUPRON injection. He said he could not feel his legs and they were very weak. Everyone denies that this is a side effect. He has been going to physical therapy and that has helped a great deal. They give him balance and strength exercise. He is 79 years old. Hopefully things get better for you .
Denial does not help ,does it ? Mo s concentrate on no signs of pc or Psa . The collateral damage they know is done ..
Its 75 percent a side effect of the drug....5 percent side effect of aging...and 20 percent is side effect of getting this fn disease..im 65 ...your pops is 69 were suppose to be enjoying the fruits of our existence . Im on my feet 6-9 hrs a day still swinging a hammer...i cant bend down to get something of the floor without major pain...and my strrngth hadsdiminished greatly....the last thing i want to do is go walk some fn more.....to all the pencil jockeys here who can walk , run ,bike, play 54 holes of golf....my hat is off to ye'.... to us blue collar fks who got this slo killing bastard....my heartfelt sympathy....yeah i could have gone to collage...i have ni regrets....apc doesnt give a rats ass about a diploma...that ive learned here.....also that drs will never admit to side effects....gjve your pops a break.....he didnt ask for this...
When I was younger, I could never find a hammer that would fit my hand...shovel handles no better. If you are still swinging a hammer you are Superman.
I'm swinging a 16 oz instead of a 24 oz framing axe. I was Superman I think the Lupron ADT is My Kryptonite
Frigging Kryptonite!
Read you history...i have ductal hystology...like your endgame approach...
They do not KNOW that it is not a side effect of the Xanti unless they actually stop it for awhile. Unlikely to be major risk in doing that. Testing that. As long as monitored during such a test. Can always resume it or switch to an alternative similar medication such as apalutamide or darolutamide. (personally I would probably just stop it for two weeks on my own and see what happens. Then report to the MO. But I cannot recommend this strategy to others.)
Thats what i did.....felt better ....but psa quickly went to .3....back on the erleada...needless to say
I am assuming his back is ok. Spinal stenosis of lumbar region of spine can cause affect legs when spine grows and compresses spinal canal or the spinal openings at the sides of vertebra in that region
Recently he had a mri to see if there was anything going on his spine and result was negative only mets but said they was not interfering with anything so they really looked in to that, they have said nothing to do with his diagnosis but now a different specialist as said it’s his treatment only today funny enough, witch has eased his mind as I think he thought the mets had gone to his legs and knees, xx
Yeah my dad was cleared for compression as yours was. It was good news that his mobility wasn't at risk but its bad in that it puts you back to square one in terms of getting to the root of the pain. We actually paid out of pocket for a neurological consult and he said it was degenerative also but when I asked him as to whether he though it could be down to the zoladex/xtandi he said he didn't think so. But I'm almost certain, particularly down to that loss of muscle mass. He's actually been taken off the xtandi now in place of chemo so I can keep you posted in how he gets on if that helps? As I've already said, he said that for the last three days, his pain had been pretty much non existent and I can only assume the dexamethasone and prednisolone can be accountable for that. Which is good. I just hope he can tolerate the chemo OK as the infusions go on
I would like you to keep me informed that would be great, it has to be xtandi all the best to you and your dad and I hope to hear good news soon xx
No problem Jack, will do. If you don't hear from me, feel free to get in touch, the best of luck to both of you 👍
Simplyput ,it’s the adt stripping muscle and strength away ..
Way cool toys, I was referring to casino house money and your continued longevity. There is still time to build a reactor...
No kidding …. Not saying its true but “ maybe “ just maybe …. I kept a selection of my most prized nuclear radioactive mementos buried in that secret locker in my back yard ( don’t tell anyone ) … I’m sure I could cobble together something fun with those. Power up my house electricity and two adjoining homes, forever. wipe out all the mosquitos for a block, give free x-rays … stuff like that. Vaporize a couple irritating “ elements “ in my life yayahahahaya yayahahahaya.
Haaaaaay …. This has cheered me up a lot yayahahahaya
Just say’in 😂😂😂😂
Reminds me of my setup when I used to repair surveying instruments both electronic and optical.
In the photo ….
The tall kid … I’ll call him Jeff , a Physics student, thought I invited him over to help set up ion detectors in my fusor ….. mwahahaha …. Hand me the trumpet trocar please …. whaaaayayahahahaya
I’ve been experiencing all these symptoms too. I’m 69 and had surgery 2 years ago. I completed Lupron and Radiation last year. Over the past year the weakness in my legs has been getting progressively worse. A year ago I could walk a mile. Then half a mile. And now if I walk 100 yards I feel my legs will give out and I get short of breath. Doctors don’t have answers, just guesses. I just want to be able to walk. It keeps diminishing.
No they don’t, it’s like they don’t want to admit it’s a severe side effect from it, my dad explains it like that his legs giving way and he frightened of falling, every morning he thinks it’s the last day he will walk, I’m working with him mentally also to keep those legs moving and keep him as active as possible, I wish you all the luck in trying to in able your self to keep moving xx
Hi, being a PC patient myself (5 years since diagnosis, Gleason 4+5, external beam radiation, four years on bicalutamide, one+ year on Xtandi), I had the same problem as you.
Within a relatively short period, seemingly without a specific cause, severe muscle weakness in my legs developed. Especially when getting out of bed in the morning, I had to grab something in my vicinity for additional support.
Asking my TCM therapist (aka acupuncturist) for support, she recognized the symptoms and advised me to eat homemade broth from beef, marrow, and chicken. I must admit that at that moment, I was a healthy eater, consuming a lot of salmon and mackerel, but only tiny bits of meat.
After starting the beef/marrow/chicken broth ‘prescription’, the muscles in my legs got back to normal strength within one week (!). What may have contributed to this fast recovery is, that I consulted my TCM therapist so fast. From that time on, I kept the broth in my daily diet and increased meat consumption modestly.
My recipe and remarks:
- All ingredients of the broth should be organic, minimizing hormone and antibiotics content.
- As the broth gets sour quite quickly, take some measures:
- use only meticulously cleaned cookware, cutlery, jars. Wear hand gloves (nitrile or latex) during all stages of the preparation.
- after preparing the broth, store them (both the plain broth and the pulled meat/marrow) in small quantities in the freezer in glass jars. Each frozen batch should cover one to max three days of consumption.
The ingredients for two liters (half a gallon) of broth (see the attached picture)
- Two large chunks of beef marrow bone
- Two marrow bones for additional marrow
- One large chicken thigh
- Clean water, a bit more than the required broth volume, to compensate for the evaporation loss.
Preparation:
- Prepare the broth: clean all ingredients in clean, cold, streaming water.
- Put all four ingredients in the pot; no spices are required.
- Heat to boiling temperature and simmer for three hours in an open pot or one hour in the pressure cooker. Keep the heating at a low level; you want to minimize the evaporation of the water. All ingredients shall be and remain covered with water.
- When the actual cooking time has elapsed, allow the broth to cool down a bit
- Take the solid parts of the broth out of the pot and carefully clean and pull them. Pay special attention to the blobs of marrow, which are very soft and delicate but are essential, don’t waste any of the marrow!
- Collect and mix all cleaned (and pulled) beef, chicken, and marrow. Spread the mix between multiple jars. Store all jars in the freezer.
- What remains is the clear but not yet clean broth. Sift the broth, discard all of the remaining ‘soilings’.
- Put the bowl with clear broth in the refrigerator. Allow the broth to cool down completely and have the solidified fat floating atop the lean broth. You may now remove and dispose of the solidified fat, as this is the only component of the TCM prescription that is not essential.
- Finally, spread the lean and clear broth between multiple jars. Store all jars in the freezer.
What a remarkable story, and this really helped you,? Yes mornings are the worst and are you back to more strength in your legs? How amazing I will try anything to help my pa walk better, thank you so much for taking the time to write it all down I will cooking this for sure, had the pc gone to any of your skeleton may I ask? 5 yea great news xx
Hi Jack,
I have metastases in several lymph nodes and aortocaval but none in my skeleton.
Luckily, thanks to the Xtandi, a healthy lifestyle and modest physical exercise, my PC is currently completely ‘silent’ with a PSA that is considered undetectable. (See attached diagram)
Although my diet encompasses a lot more than just the beef/marrow/chicken broth, the immediate and direct relation between broth and muscle strength was undeniable.
At this moment, I have virtually no physical side effects, just (a lot of) mental side effects, mainly a lack of focus and mental fatigue.
I had a sharp pain in my leg and it was not Xtandi. MRI showed spinal stenosis from cancer which didn't show much PSA and my MO was amazed.
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