Neuropathy
 

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!

Re: Neuropathy
 

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 !!!!!!!!

Re: Neuropathy
 

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

Re: Neuropathy
 

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.

Re: Neuropathy
 

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

Re: Neuropathy
 

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?

Re: Neuropathy
 

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

Re: Neuropathy
 

Re: Neuropathy
 

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.

Re: Neuropathy
 

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.

Re: Neuropathy
 

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

Re: Neuropathy
 

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

Re: Neuropathy
 

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.

Re: Neuropathy
 

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.

Re: Neuropathy
 

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.

Re: Neuropathy
 

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

Re: Neuropathy
 

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

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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.

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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

Re: Neuropathy
 

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.

Re: Neuropathy
 

Really taking a hit with this neuropathy. All nails are separating from nail bed & discolored. My index finger on my left hand is swollen and it hurts to relax my hand in a straight position. I'm keeping it cupped for a little relief. There is intense throbbing pain and I have been taking tylenol pm to get a little relief. But tonight I'm thinking I will pull out an old bottle of percocet. I will call my oncologist tomorrow to see what can be done. Anyone else have throbbing pain with the neuropathy?

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The boots are definitely the last straw. Hopefully the neuropathy will pass with time-from your photo I can't imagine you in clogs! All the best,
Trish

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Greetings all,
I finished Taxol in September '09 and still have significant neuropathy in my in my fingers and feet/toes (feels like pin and needles 24/7, and only slightly better -- I can now get on shoes, and no, they are no nearly as stylish as I wore before, but beat the flip flops I lived while I was on taxol. I have not tried any of the medication yet, preferring to adjust to a new normal, and see if I can cope with natural remedies. I have tried tonic water, and vitamin B but not much effect. I would like to try the apple cider soak, but don't know the details (how frequently; amount of vinegar to be added to water). If anyone knows this please let me know.

Thanks.

Estelle

Diagnosed 12/08
Bilateral mastectomy
Unsuccessful Tykerb Trial (could not tolorate)
Switched to Herceptin
Finished Chemo 9/09
Finished Herceptin 7/10
Candidate for Vaccine Trial

Re: Neuropathy
 

Found two recent report by researchers in Europe (underline emphasis is mine):

Nat Rev Neurol. 2011 Jan 25
Monoclonal antibody therapy – associated neurological disorders
Bosch X, Saiz A, Ramos-Casals M, the BIOGEAS Study Group
Department of Internal Medicine, Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Hospital ClÃ*nic, University of Barcelona, Villarroel 170, 08036-Barcelona, Spain
Abstract
Several neurological disorders have been associated with the use of monoclonal antibodies (mAbs), especially those targeting tumor necrosis factor (TNF) and its receptors. These disorders include, among others, multiple sclerosis, optic neuritis, and various forms of peripheral demyelinating neuropathy. Progressive multifocal leukoencephalopathy, the natural course of which is lethal within months, has been mainly associated with the anti-α4-integrin mAb natalizumab and, to a lesser extent, with rituximab, alemtuzumab and efalizumab. The prevalence of demyelinating disease induced by biological therapies, as reported in randomized controlled trials and postmarketing studies, has been estimated to range from 0.02-0.20%. Peripheral neuropathies can occur early or late after initiation of therapy. Short-term follow-up indicates relatively good outcomes, sometimes after mAb discontinuation alone, although corticosteroids or intravenous immunoglobulin may be necessary to reverse and stabilize the condition. Definitive cessation of the biological therapy should be discussed on a case-by-case basis. Prospective postmarketing studies in which the control group includes patients with rheumatic autoimmune diseases-most notably rheumatoid arthritis-treated with conventional therapies could help us to evaluate the real risks and outcomes in patients receiving mAbs who develop neurological diseases.

Curr Treat Options Neurol. 2010 Dec31
Chemotherapy-induced neuropathy
Cavaletti G, Alberti P, Frigeni B, Piatti M, Susani E.
Department of Neuroscience and Biomedical Technology, University of Milano-Bicocca, Via Cadore 48, 20052, Monza, Italy, guido.cavaletti@unimib.it.
Abstract
OPINION STATEMENT: Chemotherapy-induced peripheral neurotoxicity (CIPN) is one of the most severe and unpredictable side effects of modern anticancer treatment. In recent years, a clear understanding of the importance of an integrated approach to CIPN has become evident, and efforts are increasing to better characterize its features and to identify more accurate methods to report and grade its occurrence. The clinically relevant impact of CIPN on cancer patients has been known for a long time, but knowledge of its pathogenetic aspects is still very limited. This incomplete knowledge is one of the major limitations in identifying targets for evidence-based neuroprotective strategies. Nevertheless, several studies have been devoted to the prevention or at least the effective treatment of symptoms secondary to peripheral nerve damage and to the early identification of patients at high risk of developing severe CIPN. Unfortunately, none of these studies has been successful and the optimal management of CIPN patients is still an unmet clinical need. Therefore, the modification of chemotherapy is currently the only available approach to limit the severity of neuropathy in the vast majority of patients. The indications for treatment modification are not universally accepted and they can differ among the various drugs. Generally, treatment modification should be considered as soon as symptoms and signs impair the daily life activities of the patient, but the possibility of a delayed worsening of CIPN after treatment withdrawal ("coasting") should always be considered, and delay of modification decisions should be avoided.

Re: Neuropathy
 

Here's the information from Livestrong about how to treat it 'naturally' (Apple cider recipe included):

http://www.livestrong.com/article/74...ts-neuropathy/

Re: Neuropathy
 

My lovely onco nurse said equal parts warm water to apple cider VINEGAR.

Re: Neuropathy
 

So I developed neuropathy during TCH and was told it was from the taxotere. When I went to my appointment for my third herceptin only infusion my neuropathy was the same as it had been when I finished 9 weeks earlier. AFter the infusion within about 3 hours all my neuropathy got worse. Larger areas and has stayed that way for a week. It is the worst it has been. Does anyone have any thoughts about this??? Thanks

Re: Neuropathy
 

While doing my paper on Taxol, I came across a molecular basis for the peripheral pain from it. It appears to be caused when the drug binds to a protein and initiates improper calcium signaling, researchers at Yale School of Medicine reported in a study published in the Proceedings of the National Academy of Sciences.

This response leads to side effects such as acute hypersensitivity, slower heart rhythms, tingling, numbness, and other symptoms. These serious side effects limit the drug's effectiveness. Peripheral pain becomes worse with continued use and increased dosages lead to persistent and irreversible pain.

The binding protein is called neuronal calcium sensor (NCS-1). When paclitaxel (taxol) binds to NCS-1, it makes the cell more sensitive to normal signals and increases the magnitude and frequency of changes in calcium. Over time, increased calcium levels activate an enzyme (calpain) that degrades proteins, especially NCS-1.

Calcium signals are needed for nerves to be stimulated and to respond and the loss of NCS-1 makes it more difficult to generate any calcium signals. While the loss of NCS-1 stops the protein interaction that is causing the inappropriate calcium signals, it also decreases the ability to have normal responses (PNAS 104: 11103-11108 June 20, 2007).

Someone had asked, does the intake of calcium in your diet have any bearing on any of this? Believe it or not, the Mayo Clinic has a clinical trial going on using calcium and magnesium in preventing peripheral neuropathy caused by another Bristol-Myers Squibb drug Ixempra (ixabepilone) in patients with breast cancer (NCT00998738).

http://clinicaltrials.gov/ct2/show/NCT00998738