Anyone experiencing weakness in their legs?

[theresaw]

I have been off Herceptin and chemo for a yr now. Here lately my legs have been feeling weak and achy. I feel like sometimes my legs want to do there own thing..it's weird and hard to explain..just wondering if anyone else might be feeling that. I see my onc on the 7th of Nov. I have mentioned it to her before but she didn't feel it was anything to worry about. Love you guys
Theresa

[lexigirl]

Hi Theresa,

Do you think you may have restless leg syndrome? My dear friend experiences this at night. She will lay for hours trying to get comfy. It can be very draining. I hope that you get some answers soon.

Hugs,
Lexi

[Gerri]

Hi Theresa,

I too have weak and achy legs. Sometimes it takes concentrated effort to step up on a curb. I have been off Herceptin for about 8 months. When I was on Taxol I had major neuropathy in my legs and while it did get better, I still have tingling in my feet at times. My legs twitched and jerked while on Herceptin (different symptoms than RLS) but I attribute it to nerve damage from Taxol that was exasperated by Herceptin - just my theory. That too has lessoned but I still experience it on a daily basis. I have to admit that I do not excercise like I should and wonder if that would help. My onc said my theory might be valid. Would love to hear what you find out.

All my best,

[theresaw]

Thank you for your imput. I know it is not rls. I think it is from treatment, so when I see my onc next week I will let you know what she thinks.

[mts]

I remember, while I was still bald (some phase between chemo and Herceptin) I was skipping towards the door and just fell. I was mostly bewildered at the fact that my legs just "gave up" on me. I remained on the floor, face down for about half a minute wondering what had just happenend...? (I have always been very athletic and ran serveral miles a day pre-cancer). I then stood up and was back to normal, but still very amazed at my body's lack of connection to the will of the brain...
When I mentioned it to my onc, he said that chemo not only causes "chemo brain" but affects everyone differently on different levels. I attribute the fall to my brain still thinking I was in "top shape" when my body responded otherwise.
The chemo has made my body weaker than I am willing to admit. I hate leaning on chairs or tables to get up from the floor. Like everthing else, I just gotta stay on it and keep moving. I still get some achiness, but at this point (12 months since last Herceptin), I'm just plain out of shape !

Perhaps your symptoms are how your body responds to the drugs you are taking. We all know that life is never the same after any of the toxic stuff we are told to take to rid our bodies of this scankerous (new word) disease.

Hang in there Theresa, your body is telling you can't go out and start bench-pressing yet. Be glad your brain said so first !

Maria

[Soccermom]

Funny you should mention this theresaw..I finished Herceptin 15 months ago. Last winter I started having severe leg pain (to go with my hand /wrist issues) saw a Rheumotyolgist and she Dxed Polyarticular Arthritis. During the summer it got better ,but in the last 3 weeks the pain has begun in earnest. Granted I had major surgery 10 weeks ago (reconstruction w flap), but I never had weak legs..until now. I too have to haul myself up with something if sitiing on the floor. Have added vitamins (potassium, extra Calcium), antiiflammatories,muscle relaxants at night for pain etc.
I have my 6 mo scans next week and will mention this to my Onc. I doubt she will have any insights probably send me back to the Rhematologist. Oh well..
Let me know what you find out?

Best wishes,marcia

[Andrea Barnett Budin]

For the record...

When I was on my first chemo ('95-'96) I walked slowly, kind of shuffled, more than lifting my feet up. Unless I really made an effort to look normal. With 2nd chemo ('98-'99) Taxotere gave me deep muscle pain in my arms and my legs. They ached like they were extremely sore. I kept rearranging myself in different positions, on different chairs, with varying pillows, but couldn't find any relief anywhere. Pain meds *helped* but it was always there. I couldn't stand for long. I was always looking for a place to sit. Or to lean. When I *walked* I kept tripping on my toes, as each step was such an effort.

I still feel what I describe as deep muscle aching in my legs all these yrs later. I have no pain in my joints or bones. I did have pain in my lower back the other day and then I realized that when I sit at the computer I lock my ankles together, a bit off the floor, and noted that when doing this it strains my lower back. So I am consciously reminding myself all day to stop doing that. The tiniest thing can become a habit which can become a stress on a body part. Like a pain in the neck and shoulders, from thinking stressful thoughts all day. Even worrying about what to make for dinner can create seemingly imperceptive tightening of body parts. And once you've had cancer -- you need to be especially alert to what you can actually create with your thoughts.

I take one Flexoral (muscle relaxant) at night every day, and I believe this helps. Omega 3s also have anti-inflammatory benefits among many other good purposes! Check out RB's posts on this. He has even written an entire book on the miraculous OMEGA 3s. RB is our resident OMEGA MAN!!

Dr. John Sarno's book THE DIVIDED MIND is an enlightening and life-altering read!! I saw this remarkable man in 1981 when I was completely immobilized by back pain. Degenerating disc disease, herniated disc, oozing blah blah orthopedists said. Surgery they said. Sarno demonstrated how we send messages from our autonomic nervous system (center of brain) to neck, shoulders and down spine. He is a psychiatrist (a real doc who treats the person, body and mind). His wisdom has saved me from decades of pain from the stresses of Life, and of course the stress of living as a cancer survivor!

BE WELL!
Andi

My partner is having this problem now. Will see oncologist in a week and a half. Calling them tomorrow though.

Her legs ache and the weakness has been getting bad fast. She is just on herceptin now for the next 5 years via IV every other week. She has to have premeds and steroids with her herceptin or she swells up pretty bad. gave us quite a scare once Her throat was closing up, and I made her pop some steroids and benadryl and we went to the onc for fluids. That's when the premeds became part of her treatment.

She started with Adriamyacine (sorry about spelling), then taxol, now just herceptin. had a masectomy and reconstruction and radiation too. It was stage 4, she has metastatic disease, but scans are clear....a miracle.....but I live in fear of loosing her and this leg thing has me quite worried.

Stay strong,
Katerina

[karen z]

I had treatment in 05-06 and still experience some of this - much less than before (my oncologist had told me then that he had many reports of this type of thing). Sometimes I feel "aware" of my skeleton when I am walking. That is the best way I can describe it. I had it big time after chemo.

Karen, you give me hope!

[pibikay]

I think it is a side effect.Hema too feels weakness in the legs.

[ElaineM]

If you call Herceptin manufacturer Genetech at 1-800-821-8590 and ask to speak with a nurse you will find out that Herceptin can cause bone pain, muscle pain, joint pain, leg and foot swelling and other orthopedic problems.
Good luck everyone.

Hey ElaineM, did they say anything about it reversing after the treatment ends in 5 years? or at least partial reversing?

- Katerina

[ElaineM]

No they didn't. Perhaps they haven't gotten that far in the studies yet.

Thank you....it's my fear right now that it will get worse and not reverse much.

[Rich66]

Mom was mentioning this literally yesterday...before adding herceptin into the mix (she had Herceptin for a few months a couple years ago). Said she would like to walk more but the legs make her feel unsteady. I was chalking it up to accumulated inactivity leading to loss of muscle mass etc...but maybe there's more to it.