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Peripheral neuropathy from Cytoxan/Taxotere - permanent?

ender
Posts: 167
Joined: Apr 2011

Hi everyone,

After my second round of Taxotere/Cytoxan, I am experiencing pain in my fingertips and some tingling in my toes. Is this peripheral neuropathy? If so, what does that mean? Is it permanent? Will it get worse? Does it mean I should stop the chemotherapy?

Any thoughts appreciated.

Eva

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Taxotere was part of my chemo cocktail too (6 rounds TAC), and what you're experiencing sounds like the peripheral neuropathy I have. It can be permanent, but isn't always. My last treatment was Dec 9,2010. I still have numbness/tingling in my fingertips and in my toes.

In my case, it did continue to get worse with each treatment, and is slowly getting better now. My onc felt the benefits received from the chemo far outweighed the neuropathy, and I agreed.

Please be sure and talk with your onc about these symptoms. He needs to know so the two of you can talk about the risks/benefits. Good luck with the rest of your treatments.

Hugs,

Linda

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I have significant PN the pain is better but still have numbness and weakness in my lower legs and hands. I dont feel it has really improved lately. However i do believe that it usually gets better. I was advised to take vitamin B6. and some people have suggested staying away from hot baths. I did not as I had to soak in the tub several times a day because of other problems. I would definately try the B6 after checking with my doc.

ender
Posts: 167
Joined: Apr 2011

Thanks guys!

Im sorry to hear you also experienced this, but grateful that you are sharing your experience. Its worse just when I wake up, and doing certain things hurt my fingertips. I have an appointment with my MO on Wednesday, will bring this up. I hope you both continue to get better!

Eva

BMS's picture
BMS
Posts: 127
Joined: Feb 2011

I still have PN in my toes. The numbness in my fingers is gone and my toes are slowly getting better, but it's still there. It's at its worst in the mornings. I usually have to dangle my feet over the edge of the bed for a while before I can walk.

Bonnie

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

I had Taxol, but that particular side effect is common for both. I had a bit of PN early on and was worried I would have to stop early but it didn't stay till about the 10th round. I had 12 rounds. Last one was 3-2-11 and the PN is not present any more. My oncologist said it usually resolves with in a year. Keep your oncologist posted on the severity.

Cindy

ms.sunshine
Posts: 710
Joined: Mar 2010

It did go away as soon as the treatments stopped. I have no problems now with PN.

midnight10
Posts: 74
Joined: Sep 2010

I had Taxol and got PN in my feet after the second treatment. Finished chemo 11/16/10 and it continued to get worse until oncologist put me on a med to help it. It got so that I could hardly walk and the sharp pains and tingling at night made it hard to sleep. I'm still on meds and it is getting much, much better....I can wear a variety shoes/sandals rather than just the one pair I wore for 5+ months to work :-)
Cindy

creampuff91344's picture
creampuff91344
Posts: 989
Joined: Nov 2008

Eva, I also had PN beginning soon after the first TAC treatment. My last chemo was in September 2008, and the PN is gone except for the four small toes on my right foot. I have tried everything, but so far nothing helps. It is bothersome, but certainly worth it to have been declared NED just a week ago. The PN usually goes away when the nerves have a chance to settle back down after you complete your last chemo treatment. Unfortunately, I guess my right foot took a beating, so dealing with just that foot isn't so bad. Hope you are able to cope, and that you have a quick recovery after you finish your tx. Hugs, Judy

linpsu's picture
linpsu
Posts: 725
Joined: Mar 2010

During my A/C chemo, I developed extremely painful hands and feet - blisters, peeling, etc. I couldn't hold a fork or write with a pen. Then I had Taxol. This eventually went away after chemo ended, but I still have tingling, pain, numbness, etc. in my feet which has not gone away nor has it improved. I have taken B6 as per doctor's suggestion, but it didn't do any good, so she said I should stop taking since it hasn't worked after this long (I'm one year out from my last chemo). Hope you are feeling better soon. I've heard that most people have their neuropathy go away eventually. Hugs, Linda

vision4utoo
Posts: 1
Joined: Jan 2012

I have to admitt after 3 years post Chemo my hand and feet neuropathy is worse and hasn't gone away, I can barely walk most days and have difficulty using my hands. they wake me up out of my sleep, the pain is so bad.

Norma53
Posts: 11
Joined: Jul 2010

Dear Eva,

I am sorry to hear that you have neuropathy after your 2nd treatment. I too had taxo/ Cytox for my stage 2 cancer. I finished 4 treatments out of 6 b/c my neuropathy was increasing., I completed chemo June 2010 then radiation July. I already had neuropathy in my hands and arms due to work related carpo tunnel and tennis elbow (been on neurontin for 7 years) so my Dr. was concern that it did not get worst. I felt some neuropathy at the end of my treatment and it seemed to increase as time goes by. My neuropathy is more like sharp pain and burning than the numbing some people experience. The neuropathy has climbed up to the back of my legs. The only thing that controls my neuropathy pain and discomfort is Perocet, 3 x a day. I am able to work and funtion with the medication, I tried every medication known to help nueropathy but nothing worked. I also found that exercising helps but it is a two edge swored as it also give me pain but less of it. The nueropathy has also caused ringing in my ears and disgestive issues. I must say that I am now regular as the result of the neuropathy, I had alway suffered from constipation, there is a plus.
It has been almost a year since my last treatment but I still have not given up hope that my neuropathy will go away. Stay positive. I've heard that the people who developed neuropathy in the beginning that is usally disappears after the chemo has stopped. I will keep you in my prays. Please keep me updated. God Bless you. Norma

CAchick's picture
CAchick
Posts: 277
Joined: May 2011

Hi Eva,
I had the same chemo drugs-Taxotere/Cytoxan. I had four infusions, with each being three weeks apart. I had peripheral neuropathy from about the second infusion until about two months after they were done. It occurs because the drugs are attacking rapidly multiplying cells (of which nervous system cells qualify). Mine did go away as I said, and I am a year and a half past chemo and a year past radiation.
I would say, let your MD know. Then you guys can discuss best options. I continued, and it does get better!
Best wishes and good thoughts!
Sybil

Pinkpower's picture
Pinkpower
Posts: 437
Joined: Jun 2010

I had the neuropahty in my fingers and toes from the Taxotere, thankfully it did go away gradually and I would say about 2-3 months after I finished chemo it was all gone. Hang in there.

Lupe

mollyz's picture
mollyz
Posts: 737
Joined: Sep 2010

And i can deal with the tingly hands and feet but i have a lot of body pain is that neuropathy? my onc. said it was and my surgeon said it also and it would take almost a year to go away I have days when i can get around good and days where i feel 80yrs.old. help MOLLYZ

padee6339's picture
padee6339
Posts: 765
Joined: Jun 2009

I had Taxotere and about 3 weeks after my last treatment my toes went numb. It has been over two years since my last chemo and they are still partly numb. Every now and then I get a shooting pain in one of the toes, but no doctor seems to think its anything to worry about. They said it might or might not get better. So I just have to wait and see.
Pat

Margeaux
Posts: 75
Joined: Dec 2011

2 years ago I got NP in both hands and feet after the 7th Taxotere treatment. It was particularly bad on the left, numbess all the way to the knee, and the right hand. Doctor put me on B Complex Vitamins plus an additional 1000 mg of Vitamin B1, if I remember right. Since I also suffer from chronic pain from lymph node removal, I have been on Gabapentin and now Lyrica since Nov. of 2010. The severety of the symptoms has lessend, but I stil have NP, sorry to say. On the bright side - I also attend a support group and although a surprising number of ladies had neuropathy, for most it either resolved completely or it got better. It may take a year or more.
Wish you well,
M.

Lorianna
Posts: 7
Joined: Feb 2012

I am six months out from my last chemo treatment and still have fairly pronounced PN in my fingers and toes. I also got horribly infected fingernails and toenails--I kept complaining about this to my oncologist, who just said nothing. Then it got really oozy and downright stinky, and FINALLY my oncologist referred me to a dermatologist--who had the goo analyzed and it was a MAJOR STAPH INFECTION. It took nearly six weeks of antibiotics to tame it down, and my nails got really deformed--separated from the nail bed, and several came off completely. This was just about the worst part of my entire treatment nightmare. Six months after last chemo, I still have the PN, which does not get better--but I am told that may take a year or more to start going away, everyone reacts differently, supposedly. My nails have at least improved from utterly disgusting to merely ugly, and are slowly growing out. The moral of my story is that if you start getting gunky-looking nails, get to a dermotologist IMMEDIATELY. My oncologist's foot-dragging made this condition much, much worse than it had to be, if I had just gotten antibiotic treatment sooner. If anyone else has had a similar experience, I would like to hear from you!

Lorianna
Posts: 7
Joined: Feb 2012

I am six months out from my last chemo treatment and still have fairly pronounced PN in my fingers and toes. I also got horribly infected fingernails and toenails--I kept complaining about this to my oncologist, who just said nothing. Then it got really oozy and downright stinky, and FINALLY my oncologist referred me to a dermatologist--who had the goo analyzed and it was a MAJOR STAPH INFECTION. It took nearly six weeks of antibiotics to tame it down, and my nails got really deformed--separated from the nail bed, and several came off completely. This was just about the worst part of my entire treatment nightmare. Six months after last chemo, I still have the PN, which does not get better--but I am told that may take a year or more to start going away, everyone reacts differently, supposedly. My nails have at least improved from utterly disgusting to merely ugly, and are slowly growing out. The moral my story is that if you start getting gunky-looking nails, get to a dermotologist IMMEDIATELY. My oncologist's foot-dragging made this condition much, much worse than it had to be, if I had just gotten antibiotic treatment sooner. If anyone else has had a similar experience, I would like to hear from you!

Lorianna
Posts: 7
Joined: Feb 2012

I am six months out from my last chemo treatment and still have fairly pronounced PN in my fingers and toes. I also got horribly infected fingernails and toenails--I kept complaining about this to my oncologist, who just said nothing. Then it got really oozy and downright stinky, and FINALLY my oncologist referred me to a dermatologist--who had the goo analyzed and it was a MAJOR STAPH INFECTION. It took nearly six weeks of antibiotics to tame it down, and my nails got really deformed--separated from the nail bed, and several came off completely. This was just about the worst part of my entire treatment nightmare. Six months after last chemo, I still have the PN, which does not get better--but I am told that may take a year or more to start going away, everyone reacts differently, supposedly. My nails have at least improved from utterly disgusting to merely ugly, and are slowly growing out. The moral of my story is that if you start getting gunky-looking nails, get to a dermotologist IMMEDIATELY. My oncologist's foot-dragging made this condition much, much worse than it had to be, if I had just gotten antibiotic treatment sooner. If anyone else has had a similar experience, I would like to hear from you!

Lorianna
Posts: 7
Joined: Feb 2012

I am six months out from my last chemo treatment and still have fairly pronounced PN in my fingers and toes. I also got horribly infected fingernails and toenails--I kept complaining about this to my oncologist, who just said nothing. Then it got really oozy and downright stinky, and FINALLY my oncologist referred me to a dermatologist--who had the goo analyzed and it was a MAJOR STAPH INFECTION. It took nearly six weeks of antibiotics to tame it down, and my nails got really deformed--separated from the nail bed, and several came off completely. This was just about the worst part of my entire treatment nightmare. Six months after last chemo, I still have the PN, which does not get better--but I am told that may take a year or more to start going away, everyone reacts differently, supposedly. My nails have at least improved from utterly disgusting to merely ugly, and are slowly growing out. The moral of my story is that if you start getting gunky-looking nails, get to a dermotologist IMMEDIATELY. My oncologist's foot-dragging made this condition much, much worse than it had to be, if I had just gotten antibiotic treatment sooner. If anyone else has had a similar experience, I would like to hear from you!

MAJW
Posts: 2515
Joined: May 2009

Ladies ask your oncologist about Gabapentin.....this is used for nerve pain....Neuropathy....I have severe neuropathy in my breasts...due to radiation twice...one area of my breast was overlapped for the first 10 treatments that was radiated the first go round with the beast....I knew going into this that nerve damage was possible...I was prescribed this and it has truly changed my like...

Please ask your oncologist if this would help you...it's a game changer!

Hugs, Nancy

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I did not tolerate nuerontin, so if that doesnt work you can try lyrica. I chose to forego meds. I had very tender feet, but it is getting better. feet still numb but certain pathways are coming back. excrutiatingly slow. I had it pretty bad, with it in my eyes! i have never heard of it in your breasts, but it makes sense. i am glad it helped you!

cinnamonsmile
Posts: 1049
Joined: Dec 2010

In addition to Gabapentin (generic form of neurontin), my pain doctors have me on an anti depressent, Amitriptilyne, for pain and to help me sleep at night. One also tried a muscle relaxer called Metaxalone (Skelaxin®). A drug called Tramadol is also very good for pain. Tramadol was invented as an non-addicting aternative to Vicodin. The nurses at the pain clinic say they hear a lot of patients talk about the better relief they get from Tramadol. When my pain isn't as severe, I don't have to take the Tramadol. But lately my IV lidocaine in fusions aren't as effective and I am taking Tramadol.
I think going to a pain clinic would be a good idea for anyone with chronic pain. There are many treatments they can try. And if one doesn't work, they move to plan B.

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