Nueropathy on Taxatere. Should I have my next treatment?

waytooanxiousmommy

I had 3 weekly Taxol infusions and then I was allergic so I had a heavier dose of Taxatere and I am to have two more with 3 week gaps. Now I have numb heels and also very occasionally numb finger and arm. I am exercising and moving because that seems to help it but its hard to walk. I mentioned it to my oncologist and she said it was not usual to have nueropathy in the feet and so she thinks this could be something else. I also asked about glutomine and b vitamins but got no answer. She set up an appointment for me with her nurse practitioner before next chemo so we can figure out if this is nueropathy. I am really sure that it is. My heels are numb! I am wondering

1. I am planning on icing hands and feet at next chemo but wondering if I have another chemo am I at risk for not being able to walk/drive?

2. Should I take the vitamins (b2,B12) and also l gluthamine as these are supposed to help.

What were your experiences?

Thanks so much

muska

Hi waytooanxiousmommy, I don't have experience with taxotere but I have experience with taxol. How many days since the taxotere infusion that triggered numb heels? Is it improving? If you see no improvement by the time to have the next one I would ask about delaying the next dose.

You didn't mention your diagnosis, age or treatment specifics. This matter should be discussed in the context of all the treatments you have gotten so far and assessing risks vs benefits.

My personal experience with taxol: I got very mild neuropathy - mostly in my fingers - on a dose that was already reduced from standard because of elevated liver enzymes. However, I remember my numb fingers would improve by the time the next cycle was due. I was offered to stop for good after #10 because of neuropathy concerns as it may be permanent. I continued till the end. Fortunately, my mild neuropathy was completely gone a month later.

waytooanxiousmommy

I have a three week break during infusions. Numbness started at the end of week 1 and got progressively worse. Bad enough that it became really hard to walk. Now at the end of week 2 it seems to be improving but still there in my heels. So glad to hear that your mild nueropathy went away!

Gwinnettgirl

I am icing hands and feet. One tx down !

The research is solid on this. Take a probe. The therapeutic temperatures are -20-+20 . Also infuse over 3 hours . Good luck

Newnorm

Hi, I had 12 weekly Paclitaxol treatments and I religiously bathed my feet and hands in hot water every night. My Chinese acupuncturist advised me to do this to avoid neuropathy and it worked. The water has to be as hot as you can stand and keep them in for at least ten minutes. Hope that helps

buttonsmachine

Hey waytooanxiousmommy, I don't want to freak you out, but after my third Taxotere treatment I developed a painful neuropathy that felt like constant bee stings, and I couldn't walk normally for several days. My MO had never seen anything like it, but he thought I was one of the unusual people whose motor nerves were affected by Taxotere.

The more "normal" neuropathy tends to affect the sensory nerves. Anyway, please ask your MO about motor nerve neuropathy and Taxotere, and make sure you are satisfied that they are taking it seriously before you proceed. At first the nurses and even my NP brushed off my neuropathy, and it wasn't until I saw my MO that anyone noticed something was different/wrong.

I did take glutamine, which seemed to help a little. I also had been icing my hands throughout treatment, which may have helped marginally because my feet were worse than my hands. Hugs to you and I hope you find some answers.

Diveslikeagirl

Hello ladies. I found this thread when I started searching on neuropathy and I'm glad I did, because I hadn't heard about icing hands and feet. I have had 2 of 6 cycles that include taxotere and have developed neuropathy in my hands and feet (couldn't say if it's "mild" or "severe", I just know it's messing up my life). I brought it up to my PA last week and she didn't say anything about icing, but she did advise me to start taking alpha lipoic acid and acetyl l-carnitine for reducing pain and helping to regenerate nerves that have been damaged. She said that it might take about 30 days for them to reach their fullest effect. She attributes the neuropathy to the taxotere (taxanes in general) and will be reducing my taxotere by 10% for my next cycle on Friday. When I commented that 10% seemed kind of random, she explained that they calculate dosages using several factors (including age, weight, general health) and an algorithm that prescribes the highest dose for which the AVERAGE patient doesn't show debilitating side effects. Then, when someone comes in with neuropathy, they dial it back. My PA said they take the neuropathy pretty seriously because they want to prevent it from becoming permanent.

I did some searching and found several studies that are now showing icing as a way to prevent neuropathy and I will be bringing it up with my MO. I'm also planning on bringing ice/frozen peas to my next infusion and giving it a try. I'm not even half way done with the taxotere and I don't think I will function well if this gets any worse.

Thanks for this thread and the good info. The more I look around, the more stories I've seen about "I iced and I didn't get neuropathy." I wonder if my PA doesn't believe in it or simply forgot to mention it. But I'm really happy that she's reducing the taxotere (with the comment: "You'll still be getting MORE than enough taxotere to kill all the cancer"). We really have to be our own advocates here, don't we?

Mindy

Misstic

Hello Diveslikeagirl,

I had severe neuropathy with weekly Taxol. Both in hands (the most painful) and foot. Even in wrist (but not in the ankles). I also had trouble in my mouth the day after the IV. The point was that at the end of the week pause, almost all symptoms faded (I never had numbness, only tingling and severe pain).

When I finished the 12 rounds, in one month, the neuropathy completely vanished.

Two months later, I had my first pill of Tamoxifen. And tingling reappeared a week later... When I take low dose of Tamoxifen for several day, the tingling decrease.

What works for me: alpha lipoic acid is OK but not a total relief. I took Ambien for 15 days two months ago and the neuropathy faded away. Tried Lyrica once but but experienced brain fog. I have also a personal method: despise the tingling and act like if it doesn't exist.

Hope it helps.

Diagnosisbreastcancer

I had weekly doses of Taxol and iced my hands and feet. But I still got neuropathy and it was so bad that I couldn't close a zip lock bag- my fingers didn't work. My oncologist said another patient had found that Alpha Lipoic Acid helped her neuropathy, so I started taking that. After about 5 weeks, the numbness and pain in my fingers and toes was a bit better. Now, 6 months post-Taxol and still taking alpha lipoic acid with biotin (600 mg) every morning, the neuropathy is much better. I still wake at night with pain in my feet and have shooting pain in my hands at times, but it is SO MUCH BETTER than right after I finished taking taxol. Acupuncture has helped too.

meg2016

If you can start acupuncture (in addition to icing) I would do it. I had neuropathy after my first treatment as well, but at Dana Farber they were doing research into acupuncture as a treatment for neuropathy so my MO suggested I try it. I started doing it 1-2 times per week during treatment and my neuropathy reversed and got better and better as I went through taxotere.

LaughingGull

Hi ladies,

I had my first taxotere infusion three weeks ago and I developed tingling in my fingertips around 15 days later. I did not do the icing during the first taxotere. Yesterday I had the second taxotere, and after reading about the icing in these forums I asked the MO if I should do that. He said the icing can prevent the chemo getting into your fingertips during the infusion, but the nerve damage responsible for neuropathy happens at a higher level (the damaged nerves are higher in your arms, not in your fingertips), therefore, the icing is useless to prevent neuropathy, on top of a royal pain in the butt. That sounded like a pretty solid explanation so I didn't do the icing. But it sounds that everyone recommends it here, and other than asking my MO, I haven't researched anything.

@Gwinnettgirl, what/where is the solid research on this?

And what is the research on acupuncture helping Taxotere neuropathy? My MO mentioned that could help but I have little time or patience for wasting my time and resources in alternative, unproven therapies.

Thanks

LaughingGull

Diveslikeagirl

LaughingGull:  thank you for your MO's perspective.  I have to admit the reasoning sounds logical.  When I presented the subject of icing to my MO, he took a "it probably can't hurt anything" attitude and said I could try it if I wanted to.  For the record, he is pretty conservative and really sticks to clinical data he can read and evaluate.  As I'm listening to him, I'm thinking:  "I'll bet this idea is only one of many "natural" approaches you hear about daily from patients, and just let them try on their own if it can't hurt anything."   He didn't endorse alpha lipoic acid or Acetyl-l-creatine either, but in another thread, someone has a handout from Dana Farber that specifically recommends those supplements to treat neuropathy.  I guess the MOs focus first on preventing recurrence and then mitigating side effects.   But they did cut back my taxotere for the next cycle, so at least the neuropathy is being recognized.

Below are two of the sources I found on icing.  If you're doing research, I recommend starting with "chemotherapy induced peripheral neuropathy" (CIPN) because there are a ton of papers out there addressing neuropathy in general.  

In the end, whether I keep doing icing for my last 3 cycles, I guess I'm not going to know for sure about the neuropathy until after chemo ends.  Plus, I won't know if any improvement is due to the lowering of the dose.  It's a crap shoot (emphasis on the CRAP).

http://www.oncnursingnews.com/web-exclusives/frozen-gloves-and-socks-may-relieve-chemotherapyinduced-peripheral-neuropathy

http://www.sciedu.ca/journal/index.php/jst/article/viewFile/9340/5863

Mindy

Beatmon

Despite billions of dollars and hours spent, I agree....most of this is a crap shoot