Not Neuropathy, Loss of Muscle?

Gingermiss65

I am 1 1/2 years post Taxol treatments and 9 months past last Herceptin. I've been told by my G.P. the stiffness with my legs is not neuropathy. I do agree. I have been on Naproxen with a pain killer since about 3 months after all my treatments. My legs right after finishing my treatments were so stiff from feet to upper thighs it was like walking with wooden legs. After being on the Naproxen now it has helped, I only have the stiffness in my lower back and thighs now, at times. I think a lot of it is and was inflammation from the chemo. Anyways, my doctor suggested seeing a physiotherapist, which I did last week for the first time. She also agrees after testing me a bit, that it is not neuropathy. So what is this? I can't seem to get limber. It is like atrophied muscle. Anyone else experience this?

WC3

Gingermiss65:

Have you seen a neurologist and had an EMG and nerve conduction study done? Those two tests can detect nerve and muscle issues. Also, are you on statins? I know two people who were on statins who had to be switched to non statin cholesterol medications due to neuromuscular issues the statins were causing. In any case, I think a neurologist who specializes in neuromuscular issues would be obe of the kinds of doctors to see for your issues.

Gingermiss65

Ok, thank you for that. I will talk to my doctor re: the neurologist. I am not on statins. So even though I was told it was not nerve damage, I feel something is going on with the nerves and muscle in the upper legs. The physiotherapist feels it is just a bit jumbled, my words, not hers. Trying to explain it. I have not ever heard of a EMG. Now I hope my doctor can understand all this. It gets stiffer with exercising.

Denise-G

Gingermiss65 - I ran into a woman at the grocery store last week who had a cancer cap on. I always seek out those women as I know what it is like, and we engaged in cancer chat! She told me she took Taxol for a non-breast cancer and she was having terrible stiffness in her lower legs. I told her I had neuropathy, but she said her doctors did not think it was neuropathy, but something else caused by Taxol. She said she felt like she was walking on "wooden legs", your exact description, and they had not gotten to the bottom of it yet.

When I just saw your post, I was amazed because your descriptions sounded exactly like hers.

WC3

Gingermiss65:

An EMG is an electromyogram. It's a test where they stick a little needle in to your muscle and can see/listen to the electrical signals in them and detect any abnormalities or look for signs of myopathy.

Gingermiss65

Denise-G that is interesting. She had Taxol for non-breast cancer? I am guessing that meant DCIS? Well I hope her and myself get to the bottom of this? Imight add too, if you ever see this woman again, that a lot of it is inflammation. Chemo just causes a lot of inflammation. Naproxen, which is a really good anti-inflammatory and has a pain killer added, really helped a lot. I am hoping if I just keep on it, it will totally clear all of this up. It hasn't yet. It isn't as bad as it was when I first finished Taxol, so I am hoping it improves totally within a short while. It has all been gradual improvement with everything, as you know. And WC3 thank you for letting me know what EMS is. I will ask my doctor. Hopefully, these exercises the physiotherapist has me doing will get rid of it.

DATNY

I suggest you also test for a thyroid panel and vitamin D. I get stiff muscles with low thyroid. Low vitamin D also make it worse somehow. Wooden legs describes my situation well.

MuddlingThrough

I know just what you mean. In my right arm and hand, I have a combination of neuropathy, lymphedema, joint pain and trigger fingers from letrozole, and perhaps some degree of carpal tunnel that was there before dx. The LE and neuropathy got very bad after taxol started and I have also noticed severe changes in my bicep especially. It's not exactly atrophy because I have used my arm as normally as possible throughout this...but...the muscle isn't in the same place as it was and it doesn't flex and lengthen as it did and as compared to the left arm. It was almost as if it had been torn, and it felt stringy, and had moved toward the inner part of my arm, yet I could still use it to some degree. Very distressing on top of everything else! Two or three months ago, I started using one- and two-pound hand weights again, trying to increase strength in my arms, chest, and upper back to support my spine which has mets and a compression fracture. These are gentle exercises but at first my 'bad' arm was just really awkward, although it would bend and lift in some fashion. Over the weeks it has gotten a little better and the muscle seems to be more in line with where it should be so I'm hopeful it will keep improving. It has been very weird and uncomfortable.

wrenn

I am 5 years out from just one treatment with taxotere (no Taxol) and have what was first thought to be neuropathy but didn't really feel like it to me. I did have the typical neuropathy symptoms at first but now am stiff and have trouble standing.

I am convinced it is from taking Cipro and Flagyl for diverticulitis. I was cut off chemo because of the diverticulitis and was given cipro/flagyl a few days after chemo.

Looking back at my calendar I had taken it 5 years before Breast ca Dx and at that time had to buy a cane and had xrays of my knees to see if it was arthritis.

It would be interesting to me to hear if anyone else has taken cipro or flagyl and had these reactions.

Cria

Ciprofloxacin and other drugs in that family have been known to cause tendinitis and tendon rupture. It isn't super common but not unheard of. not aware of long term muscle side effects, however.

Gingermiss65

Well, I am starting to get to the bottom of it, I think. Or headed in the right direction. I am going to the Rheumatologist in a few weeks, as we think it may be Fibromyalgia. I had blood work done and an ECG to rule out other things. The blood work came back positive for autoimmune i.e., lupus. Now, it can read positive and not be Lupus, as I don't have the usual butterfly rash on my face and my organs are functioning ok. So, if you get a positive blood test and it is not lupus it just means most likely there is another auto immune disease going on here. Now we need to see what it is. My mother has Fibro, and she is the one that made me aware of this. So muscles and joint stiffness goes along with Fibro. Finally, it just didn't seem right to have stiff legs like this and muscles etc. so long after finishing chemo. So, this is something for other women to look into if they have this stiffness and aches etc. and there is no reason for it.

Vikinggrl

I don't know if anyone will see this as it is a topic from 10/2018 however I am seeing my Oncologist tomorrow for horrible weak legs and arms, similar to the descriptions in the previous posts, weak and stiff legs and hard to make it up stairs or hold heavy items, things I used to do without trouble. I wish I knew if this is from the Taxol or from the previous A/C. I still need 2 more Taxol infusions I know these are important but may skip these if they are causing the leg trouble. I don't want to have this side effect long term as it will make my life very difficult.

Gingermiss65

Hi, it has been a while since I have been on this site. I want to give the latest update on my condition of the stiff legs and joints. I was on an anti-inflammatory with a pain killer for about 6 months. My doctor referred me to a rheumatologist, as we were trying to see if I had fibromyalgia or something else from the blood work I had done, which suggested I may have some sort of auto immune disease. These blood tests can be wrong and in my opinion may read wrong also, because of all the treatments you have gone through with the chemo and in my case Herceptin, as well. I was also in the hospital for a week under IV antibiotics for a reconstruction infection. The antibiotics were really strong and would burn my skin if the IV wasn't in right. A lot for your body to go through. Anyways, the rheumatologist said there is a low percentage of ppl/women that will get those side effects from the Herceptin. Because I was really healthy before all this started, she said it was treatment related and would go away. It gradually did. It has been 1 1/12 years since I have been off Herceptin now and 2 years since I finished my Taxol. I can say everything is back to normal. I am pretty limber now. Knock on wood. Watch me have problems now. lol I just wanted to tell you ladies on here, and everyone is different but you just have to give it time. Anti-inflammatories are not a bad thing to start doing. Talk to your doctor. I really think it has a lot to do with inflammation from the toxic treatments.