Peripheral neuropathy and other chemo challenges

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Chrisesta67
Chrisesta67 Member Posts: 46
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

Hi, Everyone. A little less than a week ago, I had my third infusion of TC chemotherapy. For the first two treatments, the worst side effects - various forms of pain, restlessness, anxiety - lasted about one week following the infusion. Now, I'm a bit worried. I think I have something called Chemotherapy Induced Peripheral Neuropathy. The pain and partial numbness are mainly in my feet; also somewhat in my fingertips. I've done some reading on this condition. From what I understand, it will probably be temporary but may be permanent. Has anyone here experienced neuropathy as a side-effect of Taxotere/Cytoxan chemo?



My regimen is four infusions of chemtherapy over 12 weeks. So, I'm moving toward my final infusion, which will be on July 25. I've come this far; I guess I'm feeling anxious about the end of chemo and how long it may take for the worst of the side-effects to disappear. I really appreciate the support offered on this site. This forum is such a valuable resource for anyone going through breast cancer treatment or supporting someone who is.

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  • Mellie289
    Mellie289 Member Posts: 156
    edited July 2013

    I haven't started chemo yet and I found your post because I am concerned about this and looking at ways to prevent neuropathy. Are you taking any supplements that are supposed to help with neuropathy, like methyl B12, L-carnitine and alpha lipoic acid? Have you discussed this with your MO?

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  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited July 2013

    I suffered neuropathy in my toes during chemotherapy, but it, eventually, went away.  I'm nearly two years out from treatment now and everything is good.

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  • Chrisesta67
    Chrisesta67 Member Posts: 46
    edited July 2013

    Hi, Mellie289. Actually, I hadn't heard about the supplements you list. I appreciate your willingness to pass on your knowledge; I'm definitely going to ask my NP or medical oncologist about these supplements and whether they might help me. My awareness of the neuropathy in my feet is very new. To date, I've had an opportunity to talk about this issue with only my nurse practitioner. She recommended Ibuprofin meds, taken liberally with food. Your response has given me other specific substances I can bring to the attention of my medical team (again, I appreciate the suggestions). I don't experiment with symptom treatment options without inquiring first and foremost with my healthcare providers; that approach is my strong recommendation to others, as well.



    For me, the neuropathy is not exactly unbearable. It's a frustrating combination of moderate pain, tingling sensation, and some numbness spread across the underside of each foot. It does interfere with my natural gait but doesn't incapacitate me. I do hope it subsides of course and I'd still love to hear from others who have experienced this side-effect of TC chemo.

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  • Chrisesta67
    Chrisesta67 Member Posts: 46
    edited July 2013

    Hi, SelenaWolf. I really appreciate your message. My neuropathy is affecting the entire bottom of each foot, toes to heel. Knowing that your symptoms eventually is encouraging for me. Can ypu recall approximately how long after you had finished chemo the neuropathy eased?

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited July 2013

    Look up Hand Foot syndrome on Wiki. The cytocin doesn't do it, it's the Taxotere. I had a severe allergic reaction to the Taxotere. All over my body. Lost hair and all nails, pretty nasty.



    My last treatment was Oct 16, what is left is what you are describing. I don't expect it to go away now. Ibuprofen may help with the pain, but not the nerve damage.



    Try the supplements, 600 mg alpha Lipoic acid is known to help with nerve regeneration in diabetics, damage is damage, regardless of cause.

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited July 2013

    I had iced my fingernails and toenails so kept them on through TCH but I did have neuropathy in my feet and horrible edema. I could only wear orthopedic sandals that velcroed and could not walk far at all due to the pain.



    Four months post chemo it is all better and I am back to exercising.



    I sure hope it is brief for you too!!!!!

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  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited July 2013

    @chrisesta67... I was still experiencing neuropathy during radiation treatment, which I started about a month after chemotherapy finished.  Because I was struggling emotionally, I asked a friend to start walking with me.  In the beginning, after each walk, my feet would ACHE.  But I kept at it and, by the second month of regular walking, I noticed that my feet didn't ache anymore, although my toes were still a bit numb and tingly.  It was about a year after chemotherapy ended, that - one day - I noticed, that the numbness was gone and my feet felt normal.  However, my toenails still peel and chip easily... but that's what pedicures are for!

    My oncology nurse said that the exercise helped "flush out" the chemo drug deposits in my toes (which, she said, get trapped in the tiny, tiny veins of the fingers and toes), although that, probably, would have happened with time anyway.  The only thing I notice now is that my feet get cold really easily and are easily injured.  Stubbing my toe or stepping on an uneven stone in the garden, can still send me through the roof.

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  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited July 2013

    Hand-foot syndrome is NOT the same thing as CIPN, but both can occur with TC. I got CIPN in my hands 3 years ago, still problematic, so bad I was unable to do my job. Still persisting, now worse with LE that started 2 months ago- bandaging and garments really made it flare up.



    So yes, it can be permanent. There is also a phenomenon called coasting during which symptoms ease but nerve has been damaged and id dying back, symptoms worsen several weeks to months later,



    I did supplements to try to prevent - may have been worse if I didn't do them, but no way to know if they actually helped,



    My MO filled out adverse reaction report for FDA at my insistence.



    also tried multiple drugs that were supposed to help symptoms, none worked, some SEs were even worse!



    I had tingling in fingers with first dose; much worse with second dose; delayed and reduced 3rd dose, I was switched to AC for final tx, Had recurrence 6 months later. Toxicity not worth it for me, but many women have good ;luck with it. Best wishes. PM me any time.

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  • Chrisesta67
    Chrisesta67 Member Posts: 46
    edited July 2013

    Thank you for the information about the value of exercise in relation to restoring the body after chemo. I'm trying to keep a positive perspective here. Suggestions like yours give me hope and material for discussion with my own treatment team. Congratulations on your recovery, SelenaWolf. Your messages are most appreciated.

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  • lpc
    lpc Member Posts: 303
    edited July 2013

    I am currently doing dose dense taxol which has high incidence of neurapathy. I just finished 2 nd dose. MO has me taking b6 b12 and alpha lipoeic acid 600. So far no neurapathy and it has helped clear up the pain in my nail beds that started at the end of dose dense ac.



    Lisa

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  • Chrisesta67
    Chrisesta67 Member Posts: 46
    edited July 2013

    Hi, Linda-n3. Thank you so much for sharing part of your story. I will ask my oncology nurse about the possibility of long-term nerve damage and the phenomenon of "coasting." I appreciate your candor and the details you share. ~ Christine

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