Neuropathy

msleslie · 12-29-2010, 08:24 PM

I finished my last dose of chemo (Taxotere / Carboplatin) on Dec. 2nd. Now, I'm dealing with severe neuropathy. One of my fingernails began separating from the nailbed this week with pus oozing out & a disgusting odor. My onc has put me on an antibotic & gabapentin. I need help with many tasks like buttons, opening cans, & difficult holding a pen. Now, even typing is a challenge. Interested in hearing from others who have dealt with this for tips on how to heal. Thanks!

ElaineM · 12-29-2010, 09:26 PM

You might want to try some vitamin B 6 for the neuropathy.
Bag Balm or Udderly Smooth creams work pretty well for dry, cracked skin. If that doesn't work good old petroleum jelly may work. Put one of these skin creams or jells on your hands or feet and cover with socks or gloves before going to bed.
Avoid soaps and creams with fragrances, which are more drying. Household cleaners can be a problem too. You might want to switch to natural green products without chemicals temporarily.
Trial and error and a process of elimination might be needed. Good luck.
A healthy, peaceful new year to you !!!!!!!!

Mary L · 12-30-2010, 07:57 AM

Hi Leslie, I didn't deal with bad nails like you are , mine just got dry and they kept breaking. Now the neuropathy, I still have. My feet are the worst. I have to take a pain pill when they get real bad. My hands go numb at night and that makes me wake up. I went to specialists and they wanted to put me on Neuronton or Lyrica and I can't tolerate those pills. They make me sick. I think I'll try B6 as Elaine suggested. Congratulations on completing your chemo!!!! Mary L

Gerri · 12-30-2010, 08:52 AM

Hi Leslie,

Taxol gave me pretty significant neuropathy in my feet and lower legs. I was numb for about a week from the knees down 3 days after my infusions and had major problems with my toe nails; my feet always felt like I was walking on pins and needles. This gradually got better with time. I did not take anything but looking back I would have at least given Vit B a try. It has been several years and I still have slight tingling left in my toes. I saw my rheumatologist yesterday and he asked me if I still had neuropathy. He offered to put my on Neurontin if it worsens. I think this is something I will just have to live with but it really doesn't bother me anymore. I believe there are a few members who have successfully tried Neurontin, hopefully they will see your post and reply. It may be worth looking into.

Best of luck to you. I hope you find relief soon.

Joan M · 12-30-2010, 08:57 AM

Leslie,

I had the same problems as you with Taxol except the nails splitting, but my neuropathy eventually went away, and I had 20 treatments at one per week with Herceptin.

Glad you're chemo is over.

Joan

msleslie · 12-30-2010, 09:04 AM

I was already on the B6 vitamin 100mg a day. That was helping quite a bit until the last dose of chemo. I've been soaking my finger in peroxide to try to clean the mess away. How long after chemo did it take for you to begin to see improvements?

Joan M · 12-30-2010, 09:18 AM

It just eventually wore off. But I don't remember it taking that long. It was several years ago.

Debbie L. · 12-30-2010, 11:54 AM

I think there are two different things going on here.

Neuropathy is the numbness/burning/pain/tingling sort of sensation, usually hands and feet are the worst, usually from a taxane ot platinum. There is usually nothing visible -- it's a nerve thing.

The nail issue can be caused by the same agents (taxotere for example) but is not necessarily accompanied by, or related to, the neuropathy. At least that's my understanding. I know people with really bad (dose-limiting) neuropathy who had no nail trouble, and vice versa.

There have been some reports that L-glutamine, in high doses, can help with neuropathy but it's usually thought of as preventive, rather than helping after-the-fact. Neurontin and related newer agents can ease the symptoms of neuropathy, sometimes helping a lot (and they might also help with hot flashes without affecting hormones -- what's not to like?). They do cause initial drowsiness for some people but most say that goes away as the body adjusts.

I don't know what to do about the nail issue, it sounds miserable. Has the infection cleared up on the antibiotic? If not, then perhaps it needs a different antibiotic -- they are not all created equal. Did he culture the mess? Does he know you're still hurting? I don't know how long it should take to clear up but it seems like it should at least be going clearly in the direction of improvement. There are wound specialists who might know more about how to enhance and speed up the healing process.

Keep us posted, and also let us know if you get any great hints that help relieve the misery.
Debbie Laxague

sassy · 12-30-2010, 03:50 PM

I did take Neurontin for about 3 1/2 years. I had minor neuropathy, but more signficant nerve damage from surgery and staph infection. The added benefit of help with hot flashes convinced me to give it a try. Neurontin helped significantly. I started off with a fairly high dosage, then was able to scale back over time. After having my ovaries removed and cessation of Lupron, I gradually stopped taking the Neurontin.

Although Neurontin benefited me with both neuropathy and pain from nerve damage, the most significant benefit of the Neurontin for me was with hot flashes. I would highly recommend it for those with severe hot flash issues.

I also had lifting of the nails and slight infection of both middle fingers and both big toes. I used peroxide, was on antibiotic and the fingernails cleared up relatively quickly. The toenails were an issue until they grew out, and even now, they aren't quite right--slightly deformed.

Hope things clear up for you soon.

KDR · 01-02-2011, 08:11 PM

Hi, Ms. Leslie,
First, Happy New Year and congratulations on finishing chemo!
I just had my 23rd infusion. I have neuropathy in my fingers and it is going to the feet, slowly but surely. I take 50 mg. of Vit B6 and it seems to help somewhat. I am reluctant to take any more drugs if I can help it so I deal with the discomfort as much as I can, although I did take Dilaudid last week, to combat the combination of everything. But, that is a rare occasion.
For dryness, the best OTC hand cream I've found is Burt's Bees Hand Creme--it's in a purple tube/box. But I've found that Vaseline with cotton gloves worn at night are the best remedy. On nail splitting...I've had that issue for the last two weeks, and it's rough. The nails peel and then break at a very low point. My onco nurse suggested a particular Sally Hansen nail hardener, which I tried and it's working. Glad to hear from you.

candlegranny · 01-02-2011, 08:40 PM

all my toe nails come off. down to nail bed. My fingernails came off too, every one of them. it is the taxotere. i am on herceptin now and the nails are coming back. i have the tingling in my finger tips. some days and some time worse than others. the worse is my feet. i feel like i have marbles under the ball of my feet contstantly. My oncologist nurse told me to take 800 iu of vitamin E daily. not more than 1000. I could not take the vitamin E until I was done with radiation. it appears vitamin e will cure cells etc and the radiation was trying to kill them so i had to wait. I still have the tingling in my fingers but only been taking vitaminE about 2 months. if there is anything i can take or do to make it better, please let me know. I did have swelling in my ankles but that has stopped. i thought it was herceptin but it was the chemo - taxotere that has to be a great chemo cause is sure is a MEAN Medicine! lol

Mary L · 01-03-2011, 08:01 AM

I have to agree with you about Taxotere. It was very hard on me and I only had to doses. My nails are all normal but I have very bad neuropathy in my feet and my hands feel like blocks of ice at night. Hope you are doing well. Mary L

axecooper · 01-05-2011, 01:43 AM

Peripheral neuropathy is a nerve disorder outside the brain and spinal cord. Patients with peripheral neuropathy may have tingling, numbness, unusual sensations, weakness or a burning sensation. Although diabetes and post-herpetic neuralgia is the most common cause of peripheral neuropathy, often no cause is found. In these situations, it is called idiopathic neuropathy.

Pam P · 01-05-2011, 05:05 AM

I had both neuropathy and the nail lifting from taxotere. The neuropathy was fairly mild and improved after I stopped taxotere. The nail lifting was worse for me. All my nails were affected. They lifted off the nail bed and oozed pus. Like you I soaked them several times a day. One got really swollen and pus built up below the nail bed and had no way to ooze out. I had to have a dermatologist lance it to drain the pus. No one put me on antibiotics. I think I lost all my nails, but they all grew back just fine on my hands. The nails on my feet are another story. The big toe nails are really thick and gross, and a couple other toenails never did grow back. I think only 2 toenails still look normal. It's been many years since I was on taxotere but I seem to remember that the nail issues started to improve not long after I quit the drug.

msleslie · 01-05-2011, 09:12 PM

Update: the infection which was causing the pus oozing from my nail has cleared up from the antibiotic. I saw my oncologist today and she increased my Gabapentin dosage to 300mg 3x per day for the neuropathy. Hopefully this will give me some relieve.

Jackie07 · 01-06-2011, 04:24 AM

Glad the infection cleared up. Hope the increased dose will help you feel better.

michka · 01-06-2011, 04:56 AM

Hi Leslie I want to give you hope.
First I am happy the infection cleared up. I lost 8 toenails on Taxol but did not suffer of infections and splits!
I had bad neuropathy in my arm after Mastectomy and bad hand and feet neuropathy induced by Taxol.
I took Gabapentin (neurontin) for more than 2 years. And a little Lyrica. With time, the stabbing and burns in my arm got a little better and when I got off AIs for Faslodex, the neuropathy in my hands in feets improved. I decided to get rid of Neurontin, because it makes you tired, and cut it out over a 4 month period, taking it every other day, then every 3 days..It was very very difficult. I suffered like a drug addict but succeeded. Today I still have the burns in my arm but it is manageable and I only really suffer from my hands and feets when it is cold. So I have heavy gloves and boots. I never take things in the freezer.
I was really happy to have Neurontin in the beginning and with time, was able to get rid of it because things really improved. Michka

msleslie · 01-11-2011, 09:22 AM

I'm still learning to deal with this neuropathy. I'm currently taking Vitamin B6 plus Gabapentin 300mg 3x per day. Earlier this week, I tried to put on a pair of my grown & sexy boots - wow that was a mistake. I think I'm going to have to buy a pair of naturalizer clogs or something equally disgusting. LOL First, you take away my vodka martinis, Second, you limit my chocolate intake & Now, you prevent me from enjoying my boots. Damn you to HELL cancer - go away from us all & don't come back.

Mary L · 01-11-2011, 11:59 AM

Leslie, I hear you. I live in my Clarks. It's hard to dress up and not be able to wear pretty shoes. I have a pair of the Ugh boots and living here in PA they work. We are getting more snow tonight. I think that we just have to appreciate the fact that we are here and complaining about not being able to wear pretty shoes and boots. Best wishes!!!! Mary L

KDR · 01-11-2011, 03:17 PM

MsLeslie,
Hey-you sound like me in the car, only I'm worse! Have you tried apple cider vinegar soak, equal parts...according to my onco nurse, this works wonders...anything at this point, right?
You mentioned chocolate...does it affect neuropathy?
Just getting it in the feet, on Taxol No. 23, with no end in sight.