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How does chemo cause weak legs?

bobmcghee's picture
bobmcghee
Posts: 44
Joined: Apr 2010

Hi,

Many people have commented about weak legs caused by chemo but I haven't found what is actually occurring to make the legs weak. I finished 7 r-chop treatments for NHL in October 2010. My guess to the weakness problem is nerve damage since my feet are still pretty numb. It doesn't make sense to me that my legs are weakest after sitting or laying down, but after I walk around a bit they get much more normal. The weakest my legs feel is when I get up at night to use the bathroom. I would like to know what is going on with these goofy legs.

Thanks,
Bob

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Bob,
This is just my opinion and you know what they say about opinions,they are like A******* and everybody has one. I think it is that all our muscles which are controlled by the nervous system are weakened by the chemo,but our legs show it the most because they are what support all the weight.I even had trouble opening twist off soda caps.Even had a problem with picking up anything that weighed more than 20 lbs. It felt like a ton.I went thru the same thing with my legs during and after chemo for about 5 weeks.My feet were not numb,but did feel different. I feel all is back to near normal now. It will take a little time. Remember we are all different in the way we react to the chemo. John

bobmcghee's picture
bobmcghee
Posts: 44
Joined: Apr 2010

John,
Thanks for the reply. Sometimes I think if I understand all the fun stuff chemo does to you it will make things better. I asked the onc why if parts of my feet and toes are numb then why do the bottoms of my feet hurt when I walk barefoot on a hard floor. He said something about pain nerves and feeling nerves being damaged from chemo that I really didn't understand. So that information didn't make anything better so understanding the leg weakness won't change anything either. Going forward I need to accept my new flaws as my normal condition and work with it. I still reserve the right to complain about it whenever I can get someone to listen. Bob

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Bob,
Nobody looks at them as complaints,only concerns. We all have them. The chemo does different things to different people. We are all concerned about the way it has affected us and are just asking if anyone else has the same effects.Some of the effects are universal.The tiredness being the main one.So far I have not seen any permanent problems. Most have gradually gone away and hopefully you will see the same results in time. Take care. John(FNHL-1-4A-5/10)

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Bob,
I finished CVP-R chemo on Dec. 14th with minimal damage. A few toes and fingers were numb, but gradually came back to feeling normal. However...the weak legs feeling is still hanging on. My upper body has gained strength back, but my legs still get weak when I go up and down stairs or stand on them for very long. My knees seem to lock up(which never happened before chemo) and my left hip gets sore and achey come evening time. That was the hip my BMB was done on, and it hasn't been right since. My ONC says it's age related...maybe?...I'm 60.. but I'm leaning more towards chemo being the culprit. The year "before" chemo I could take the stairs 2 at a time, no problem. My hips never hurt and my energy level was great. So...can just one year of ageing deteriorate someone that fast?...I think not. Like you said..we have to learn to live with this "new normal", but we don't have to like it, and it's perfectly ok to complain about it.This is a great bunch of listeners here, so keep coming back.
Take care...Sue (FNHL-2-3A-6/10)

bobmcghee's picture
bobmcghee
Posts: 44
Joined: Apr 2010

It's really nice knowing there is a place to go where people understand what your talking about. Very grateful.

xlconsult
Posts: 18
Joined: Jun 2011

Hi,
My last chemo (COP-R) was finished in Feb '09 and subsequent maint. therapy with "R" was terminated in Jan '10 due to inflammation/ulcers inside my throat. I was told that this was due to my reduced immune system, probably by over-treatment with "R". The only medication for this recurring ulcers was Prednisone 60 mg/day which was gradually reduced in strength over a period of time. Everytime the dosage went below 30 mg/day, the ulcers returned with full vengence making eating impossible even in liquid form and I have to go back to 60 mg dosage. More than a year now the cycle of high and medium dosage continued till I found a herb that made the reduction of Prednisone level to 1.25 mg now (expected zero within 2-3 weeks), sucessfully within 3 months.

For past few weeks after the Prednisone level was below 5 mg, I could feel the weak legs when I get up (only starting trouble). My observation is that Prednisone is causing the weakness, but as long as you are high in Prednisone, you will not experience it. Probably the same is happening after chemo cycle when Prednisone is stopped. Doctor told me that the weakness will go away - hope it is true.
Regards,
Hari

medsec
Posts: 25
Joined: Jan 2011

Hi Sue, Thanks for the reply to Bob, I share the same symptoms. I finished up treatments last November and thought I would be back to normal by now. I do feel ok, except for the weakness and neuropathy in my feet and legs. Sometimes I have to crawl up the steps and getting up and down my knees hurt so bad. I have started Physical Therapy and it is helping. I also have Menieres disease and have to depend on my muscles to walk. You might want to get your doctor to order you some PT it might help. Thanks for sharing.

Vicki

keryn
Posts: 1
Joined: Nov 2016

Bob, I also finished chemo for NHL in early 2010. I was very active prior to chemo, was a teacher in special ed and a part time Naturopath/ Remedial Bodyworker. - very strong ...... but chemo really put the brakes on and basically 7 years later still weak in the legs .... I'm happy to be able to walk 2 kms on a good day - feel great almost normal but when I push it I invariably end up sore and recently damaged my foot/ ankle - plantar fasciitis which seems to be taking ages to heal. Although in all honesty this not uncommon for people my age 60 if they get a bit too zealot with walking. I think the thing with the nerve damage, slow return to repair and leg weakness is the frustration and restrictions we feel as opposed to how we perceive things should be. .. and we need to vent our frustrations ... so feel free to express how you feel  - its not complaining.

 

medsec
Posts: 25
Joined: Jan 2011

Bob, I certainly can relate to those weak legs. When i came up here to my office, it felt like I was never going to make it to the top of the stairs. My legs are so weak, and the neuropathy in my feet just adds to the experience. I had Hodgkins Lymphoma in 2009, finished up Chemo ABVD 7/2010 and radiation 11/2010. The bad part is my legs seem to be getting worse, when I was hoping in time they would get better. I started on Physical Therapy a couple of weeks ago and it is helpiong to some degree, I am actually standing up now when I climb the stairs instead of crawling. I too would like to know what was in the meds that caused our muscles and joints to give out on us. Everyone tells me it is just arthritis and old age. Grant you I am not a spring chicken, I am 63, which is old but today I am as young as I will ever be and was hoping I had some life left in this body. You may want to try PT and see if it helps, if you learn of anything please share with us. Hope you will gain your strength back soon.

Phoenix10's picture
Phoenix10
Posts: 47
Joined: Dec 2009

This is one Hodgkin's survivor who also has weak legs. I've always blamed it on my crookedness (poor blood circulation in the hip joints). Sometimes its a struggle to get off the floor without any assistance. I do exercise to try and strengthen my legs but I do have my limitations too.

Interesting comments because I haven't heard of anyone else like this before.

miss maggie
Posts: 929
Joined: Mar 2010

Dear Phoenix,

I wouldn't even attempt to go on the floor. My issues are my right knee,
and right hip. Ever since having a bone marrow biopsy, my right hip
has never been the same. Sometimes, I walk a bit like a drunken sailor.
I carry a cane just in case my balance for the day is a bit off.

Since I belong to a club, I do lots of swimming and participate in the
pool exercises that we have each day.

Supposely, my NHL is gone, as of Jan 2011. If the cancer doesn't return, I
will be thankful for some of the side effects of the BMB. I was only
treated with Rituxan, no side effects. Is there some way you can go swimming
where you live??? You can exercise in the water, which is the least amount
of strain to your legs and hips.

God Bless, and continue with your remission. Maggie

JacquieK's picture
JacquieK
Posts: 10
Joined: Jul 2011

During chemo I told the doctor in the evenings it felt like there were snakes in my legs. Alot of muscle pain and tense muscles. She didn't give much that I could do to resolve unfortunately. It has gotten somewhat better (done with chemo 8 mos now). Still have some side effects, but hoping they will go away!

jsantora
Posts: 1
Joined: Jun 2012

Hi all,
Just finished 6 3-week bouts of R CHOP. Loved every minute of it - not.
I'd have to admit to being a bum for 18 weeks. When tired, I took naps. and only left the house for shopping trips 3-4 times a week. No wonder my legs and knees are weak. The timing of this side affect is odd though. I didn't notice this problem until the very last week. Anytime I bend my knees, its like there is no muscle there to hold them at a slight bend. Steps are the real danger - I can't carry things down stairs anymore, I hold on to railings just in case the knees give out. Stepping off curbs - bad news too. I started stairmaster'ing today, and doing leg extensions and leg curls with tiny weights. Yea, muscles are gone. Hopefully, they will come back. Good luck to everyone out there.

Democritus
Posts: 1
Joined: Mar 2015

Hi All,

I have gone through 5 sessions of DA-EPOCH for a lymphoma, and find myself struggling to climb the stairs. It is like my femoral muscle will not be up to the task, and I feel as if my knees are going to give up. Anyway, I found this article indicating toxicity of doxorubicin to skeletal muscle, particularly the lower limbs.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3176345/

So, the feeling may not be just up in your head, or attributed to the neuropathy. By the way, my feet are numb and fingers tingling. 

Best wishes,

D.

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2035
Joined: May 2012

My guess wold be neuropathy is adding to your sense of leg weakness, if you have it. I got neuropathy pretty badly from my drug combo (different chemo from yours). Vinblastine caused mine, but many other drugs which work similiarly cause neuropathy also. I was part of a clinical trial regarding a cream to treat residual neuropathy, but the stuff did me no good at all.

There are a variety of ways the neuropathy experience can go. Some people never get any, some get it bad, and some get it terribly (I have heard of cases in which it made the perosn's whole body numb). When actively on chemo, my legs stayed numb at least to the knee, and my hands past the wrist.

Some people get over this rapidly and completely, some partially, and some do not recover much at all. Over two years since treatment, I would say I have recovered about 50% of the feeling in my hands, and a little less than that in my feet.

I hope your neuropathy goes away rapidly and completely !

Max

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qckmom
Posts: 2
Joined: Jul 2012

I am 3 years post R-chop for NHL and I googled the weak legs as I still am suffering and wondered if anyone else experienced this.Here you all are!I wish that I could find a magic cure but it is good to know there are other people out there.I'm only 46 but I feel like I move down steep stuff like an old lady.I'm a nurse also and 12 hour shifts kill my legs.Nighttime BR trips are bad!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2035
Joined: May 2012

Super that you are posting again, qckmom, although no one wants anyone to have problems. 

You describe problems at 46 years of age.. I am 58, and tell people "I may look old, but I feel like 120 !"  Eighteen fractures, knee cap torn off, extreme trauma-induced arthritis, late stage HL, and just had my prostate cut out.   It's all good; I'm still "above ground," which is what matters.  Actually, given my medical history, I probably feel a lot better than I should. (The fractures are from going out of a rolled-up car window decades ago, after which the car rolled over  me.)  I never take anything for pain, so it can't be too bad.

I too have weak legs, but my wife says it is so that they can match the rest of my body <*** src="/sites/all/libraries/tinymce/jscripts/tiny_mce/plugins/emotions/***/smiley-undecided****" alt="Undecided" title="Undecided" border="0" />.  I take perscription potassium supplements, and also take iron (been anemic at times for reasons the doctors cannot determine), and both of those can affect muscle wellness, so you might want your potassium, iron, and calcium levels reviewed.   Have you taken a B supplement vitiman ?  B-12 helps me dramatically when I take it; I can feel the difference in energy within a short period. When my wife cooks fresh greens (collards, turnip greens) it also seems to help.  We live in the deep South (SC), and these foods are traditional and common here.

I do have RLS (restless leg syndrom) pretty bad since ending chemo five years ago, which makes falling to sleep a challange. It manifests itself as an achng feeling, but only in bed (I have no symptoms when up and about).  I do not know if any of the r-abvd drugs worsened the RLS I had prior to treatment.  I have not read of such a causal link, but would not be surprised. 

I have pretty serious neuropathy from Vinblastine (chemically almost identical to the Vincristine in chop), and the neuropathy is worsened by any prolonged standing or wallking that I might do. It is also worsened by cold.  I was in a nationwide clinical trial for a neuropathy treatment, and I studied that problem in some detail (the trial was for an anti-depressant based cream, and was considered a failure).

I hope you get relief.  Bless your work as a nurse, which to me is the noblest work that there is,

max

Susan P's picture
Susan P
Posts: 103
Joined: Sep 2013

 Hi Bob myrcperience of weakness had to do swith Chemo - csaro/ Taxal my Iron & magnesium.

Magnesiy is saparently responsiblge for the ,muscles wellness. I was put  on a supplemrnt for each each-- it did help.

 

 

Susan P from Sutheren Alberrta Canada & TX & WY.

bobmcghee's picture
bobmcghee
Posts: 44
Joined: Apr 2010

Well those weak legs just don't stop after 6 years past r-chop. Cutting the grass take about 40 minutes and I can barely make it to the end. When I am that tired I don't seem to pick up my feet properly and tend to trip on my own feet. I'm not sure if I should try walking more on a daily basis to see if I can build up my legs or if that would be a waste of time. Being 68 doesn't help either. On the bright side all my checkups are still good so at least I'm still around to complain about other things.

shasha1
Posts: 2
Joined: Oct 2016

I am a 15 year breast cancer survivor. I was diagnosed when I was 41 years old and had a mastectomy of my left breast.  I had chemotherapy every three weeks from January to August in 2002. I am now 56 years old and have been struggling with ascending and descending stairs and even have some difficulty stepping down off a curb. Where I used to run 4 miles a day pre-cancer I can only now walk. I was in my in my 16th year with the NYC Police Department when I was diagnosed, I was a school athlete and remained pretty active even during my chemotheraphy treatments I stayed in the gym. I am saying all this to say that although I am constantly in motion nothing I do seems to strengthen my legs enough so that I can freely go up and down stairs. When I bring this up to my doctors they can not offer any explanations other then it may be age related arthritis. I wish I could offer some type of remedy but I can't. All I can say is be strong and push through it and don't let it defeat you. I am here if ever you need an ear.

GKH's picture
GKH
Posts: 511
Joined: Jul 2012

56 is not young. Maybe its a combination of cancer treatment effects and 16 more years on the time clock? maybe you can find a "new normal" that suits your desires. Lots of fun, interesting things we non athletes can do. I am a bit older than you and to do the things I did in high school or even 16 years ago is not possible. And what I do hurts. I am very active and just put up with the pain and take naps for the tired feeling. I don't expect it to get better.  Best of luck. Grin and bear it.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2035
Joined: May 2012

'I must totally agree with GKH.  No one can ever know this, but your leg issues might be exactly what they are today if you had never had cancer.

At the prostate board (where I am a member, due to prostate cancer also) so many of the 60-something guys worry about 'sexual performance' issues due to disease and treatment.  But I think: We are 60 and 70 year old men ! Not surfer dudes at Malibu !

Prostate surgery and hormonal issues have caused me great muscle atrophy, weakness, etc.  My shoulders, arms are sticks now.  But I am in late middle age (60 currently) now, not the man I was ten, or even five, years ago.

You MIGHT have some neuropathy (chemo-induced nerve damage), which can contribute to leg issues, which may be worth checking on, but if you did you would have most likely known about it long ago.

I wish you health and vitality,

max

shasha1
Posts: 2
Joined: Oct 2016

Thank you so much for your responses. Now that have a name to what may be the cause of my issue I can bring this up to my doctors next visit. If I didnt have siblings in my age rangr who are very active can bend and walk easily I would be able to except that my leg issues may be it is what it is, however although I am the oldest girl in my family my next sister is a year younger on what is often referred to as irish twins is very flexible and active now but I was always much stronger and active then they were, always the athlete, run, jump, climb and lift more then them. It was always thought that I  was the youngest of four. With all of this the only excuse that I  can accept is that there must be something to this claim of neuropathy; some damage to my nervous system from the agressive chemotherapy treatments. I wish you all well, thanks for the advise.

 

lindary's picture
lindary
Posts: 385
Joined: Mar 2015

From what you describe it sounds like what I was dealing with in 2014, before I was even diagnosed with cancer. I was having problems with both legs swelling and walking just from my car to the building where I worked was exhausting. We have been in that building for 6 years and didn't have this problem until that year. Going up or down stairs was a real strain. When I told my Dr she had me go to a vein specialist. They did testing on my legs and determined I had insufficient veins.  The fix was to have the veins lasered to shut them down. They were done a few weeks apart. The improvement was almost instant. 

Last year my husband was also having problems with his one leg swelling and it made walking very tiring. I got on his case to talk to his dr to see if he had bad veins. He finally talked to the dr this year and in his case his veins were fine. His dr ran more tests and they found that an artery leading to that leg had blockage. They put a stint in about a month ago and the leg is much better. 

What I am offering is other reasons for weak legs besides cancer treatment. If you haven't talked to your primary Dr yet about the problem, it may be a good idea to check. 

 

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