Neuropathy

SoCalLisa · October 2009

It is hard to explain when our feet are both numb and

painful at the same time...a paradox..but true..for me anyhow

Anonymous · October 2009

Linda, I am sorry it has gotten worse since chemo. I was on abraxane which is in the same family of drugs as Taxotere, Taxol. As I said in an earlier post I do think mine is getting better, not much, but I can now feel my toes because they sort of burn as if I am wearing a blister on them (which I am not)..the balls of my feet feel large and swollen (which they are not). Before I could not feel my toes so think this burning sensation is maybe my feet coming back to life. Some people take lyrica...I took neurontin at one time, but it has SEs also so I am not taking it and am waiting to see what happens. I know a woman who did not have neuropathy at all until AFTER she was completely finished with chemo. Every case us different and I am saying prayers that we all get our feeling back.

bf2009 · December 2009

I had only had one dose of chemo so far and has the numbness of feet. It felt like my feet and calves had just run a 300 mile race. The bottoms of my feet numb and my calves felt "tight" and painful to walk.

It has left some since my one dose of chemo but looks like it will be returning from what I read. My onc doc told me it sounded like perhipheral neuropathy and when I about fell off the table because I can't feel my feet well, she looked surprised ?

Shepken · April 2010

Hello,

This is the first time I have sent anything to the Breast cancer support. I had bilateral mastectomy Dec. 06. Her 2 positive stage II 4 lymph nodes. I have check ups; told my markers are fine, a little higher last time but "no big deal" and come back in 6 months.

I am loosing my hair and my fingers are so numb at night that the pain wakes me up. I have read that these are also possible signs of bone cancer. I try not to think about anything but waking up every night has forced me to think.

No one has said anything about bone cancer only the side effects of Chemo. I had the Taxol also. I am on aromasin now.

Thanks for any help.

Anonymous · April 2010

I would bet it is more likely to be from your treatment than from bone mets. I had (or should say have) bone mets and the only symptom with that was an intense throbbing pain in that area. Now I am happy to say my neuropathy is 75 % gone....still have the numbness in my thumbs, but think that is because my finger nails are still not back to normal and I feel my toes and most of my foot now has feeling. Any chance you might have carpal tunnel....I used to wake up in the middle of the night because my hands would be numb to the point where they hurt. Sorry not to be able to be of more help. I did not have neuropathy or hair loss with aromasin and was on it a long time, but do think there were women posting saying that it caused their hair to thin. I pray that all goes well for you.

dreaming · November 2010

This is 2 years after your posting, I was fine after chemo,but 2 years ago I had this burning pain etc in my feet, I thought it was fibromalgia,and later polymalgia rheumatica.

I went to a neurologist because of feeling dizzy and difficulty walking and I was told I have neuropathy because of the chemo I had in 1993! I have lost much of the feeling in my feet. I had C.F.M. slow infusion.

I am in shock that I can have this problem now.

I just want to share with survivors that time is not a fix it all.

yizbieta · February 2012

I must add to these postings- I was looking for some common thread with what I am dealing with as well- and sure enough, I found it here.

I finished 6 rounds of taxotere/cytoxin in June 2011. Had rads (36) until Aug 2011. The neuropathy in my feet was mild from the chemo- at first. I had it mostly in my hands- a lot of twitching, painful bones- I thought it was from the nuelasta.

During chemo as well, the restless legs I had suffered from most of my life had increased so much that I could not sleep all night just having to rub my muscles to keep them from aching. Nothing mild had any effect (tylenol etc).

Slowly over months, I noticed more and more pain in my feet. In December 2011, (6 months after chemo ended!!), my toenails began to turn black. I had by then gotten used to being off balance because so often, I could not feel my toes. My hands are still hurting- and even my left arm, when stretched out (opposite side from surgery), hurts so badly at the thumb, that it feels like an electrical shock (this is also new).

The really weird thing is that in December also, I developed this phenomenon of feeling like bees were stinging me all along my arms and torso and some on my legs, whenever I get the least bit warm. It is very painful, but goes away within a few minutes, thankfully. It comes on very quickly though and I feel like stripping off all my clothes and jumping into ice. Very painful. I cannot get relief from it while it is occuring except to get my temp down fast and then it subsides. It happens thre to six times a day.

My onc has not a clue as to what that is. I suggested something an onc nurse said to me- that it was the nerve endings trying to stretch out and grow back, but he only said, "could be that...." and shrugged, saying he had never heard of that before. He typically avoids talking about side affects as much as possible.

My elbow joints are flaming with pain most of the time- whenever I move them- and I have to forget lifting anything ever again- they feel like they are going to fall off.

I appreciate this site, as always. Even now, months after - we still have to deal with this. I am grateful to be alive- and grateful to be done with all the treatments, but would have loved to know what I was going to experience beforehand. It is a bit like playing russian roulette- which new side effect will show itself today?

Brain is different now- memory, concentration....but I am learning how to help myself get better by doing some mental exercises. I am also eating ice cream a lot- stress maybe??

Again, grateful, but so tired of it all!!! And I wish they would just be honest - with themselves- that side effects are real.

Linda-n3 · May 2012

Elizabeth, your experience is interesting. When I wake in the mornings, sometimes my whole body feels as if it is on fire, with all the nerve endings of my skin and superficial muscles hitting a 10/10 on the pain scale and I feel like I just cannot move!!! And yet, with a very very gentle superficial massage and getting up and moving, things settle down after a few hours. I am wondering if this theory of nerve endings growing back. My neuropathy has always been mostly in my fingers, but I really wonder if more of my nerves were damaged and I just didn't pay as much attention - my fingers are my livelihood and loosing function has been devastating, although I am finding voice recognition dictation systems helpful (sometimes not, as the mistakes take lots of effort to correct) and am finding other things that don't require fine touch and motor skills.

susan3 · August 2012

i have a long process of somewhat helpful treatment for nueropathy for pain in feet. gabapentin with tramadol took the edge off. if i am on my feet to much i give them an ice bath, and lotion up with no crack and aquaphore during the day with socks. once its absorbed i switch to uggs, no socks. they actually keep your feet cool. at night i use mary kay emoloint cream for your face, load it up on your feet. works well. then somedays i just need to stay off them. they also have great gel bandage's out now that cushion your feet. no miracle cures here, but it is helpful. good luck. i also have had restless leg all my life. stress makes it worse. i have found a 5ml of Valium does the trick for me, lets me sleep. hang in there

FacingLIFE · November 2013

My oncologist said that I'm only need to be seen once a year since chemo ended late May 2007. Yes, I'm grateful to be alive. However I have had so many follow-up surgeries from the infection in my surgery sites, other side effects most of which have gone away except for the constant neuropathy in my feet. Last week I had foot surgery to repair the ligaments, tighten supporting structures in my foot, install 3 screws and a pin in my toes to correct the overlapping toes that have occurred since chemo. This was an extremely painful surgery that will hopefully correct one foot issues and my balance. The other foot still needs to be repaired by I'm going to wait awhile to see if this surgery is successful. My toes were so bad that the 2nd toe was overlapping and pressing on my big toe to the extent that the nail was coming off. I should say coming off again since I lost all my toenails and fingernails during chemo.

I've read on the forum that some believe the neuropathy could be from both the AC and Taxol or Taxotere. Other say that Arimidex, which gave me horrible joint pain, and Femara ditto, and Tamoxifen, made their neuropathy worse. I don't know about those hormone therapies making the foot pain and tingling worse. I had taken each of them and Tamoxifen the longest, all made all my joints ache.

I hope the swelling in my foot diminishes soon. The surgeon said it will take quite a long time. Elevate and ice for 20 minutes per hour. UCSF orthopedic foot surgeon told me the recovery for this surgery can take up to 8 months. I had to wait until I was no longer needed to take care of my late husband before I could consider this surgery.

My regret is not being fully informed about the neuropathy to my extremities and a possible smaller does during treatment back in 2007.

If other taxotere/taxol patients have permanent damage to their feet and joints, would you please tell me of your experiences.

SoCalLisa · November 2013

I didn't have that chemo,but I still have neuropathy in my feet. I also have planter fasciaitis. I have been taking Lyrica,now for about ten years. I tried amytripiline,and neurontin,but neither worked. Nor did anything else including acupuncture. The Lyrica. Makes me tired but it is worth it.

Tomboy · August 2014

i looked up some simple excercises that you can do that do help to relieve neuropathy somewhat, interestingly enough they were for plantar fascitis, i had just looked up because i was curious. carboplatin is also a culprit for neuropathy, as are all platinum chemos too. i also found a topical cream, i usually dont believe in them at all! have got many partially full containers of them, but i am on my sixth tub of Topricin cream, formulated for diabetic neuropathy. you can get it on amazon, cheaper than the stores. don't you love "special effects" (SE) of treatments? Good luck, ladies.

Neuropathy

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