Peripheral Neuropathy After Chemotherapy Ends

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HikingLady
HikingLady Member Posts: 650
edited March 2019 in Chemotherapy - Before, During, and After

I'd like to start a thread to discuss peripheral neuropathy after chemotherapy is finished. Please share your experience about onset, severity, symptoms, and how long it's been going on, as well as any treatment plans that have helped.

My CIPN, or Chemotherapy Induced Peripheral Neuropathy, started about two months after chemo ended. During chemo, I had some numbness in my feet, but never in my hands. Two months PFC, I started having a lot of neuropathy in my hands, and I have a small amount of tingling in my feet now, but it's very slight. For five months now, I have had a loss of sensation in my fingertips, and a feeling that my fingers and hands are 'asleep.' No pain, just numbness. It sometimes goes away, fleetingly, so it's not constant--a bit sporadic, but more often with me than not.

My MO's office has suggested some supplements, including amino acids; their absorption is adversely affected by chemo. As advised by my MO, I'm now taking (daily): 2K Vitamin D, B-complex, 5-10g L-glutamine, and Alpha Lipoic acid. The neuropathy hasn't gone away, but perhaps it's slightly better after two weeks on these. I keep wondering if the neuropathy will resolve. My MO says maybe after a year or two, or maybe never. Acupuncture is sometimes suggested as helpful. I'm wary of wasting money and time if there's not a proven benefit, but I'd like to know what others out there have experienced.

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  • CBK
    CBK Member Posts: 611
    edited March 2019

    I started Symptoms of CIPN during taxol around number 7 infusion. It was both in my hands and toes. It started with a terrible feeling of my hands being strangled like someone was cutting off circulation. My feet were numb and clumsy. I would drop a lot of things and trip.

    It has improved markedly I’m about 16 months PFC. I tried acupuncture early on and it’s did give me some relief but I wouldn’t say it cured it. I went to a cancer pain management doctor that suggested Cymbalta. I never took it. I do take D3, b complex. And a host of others for issues due to Arimidex.

    I’m not a Dr but the tingling and numbness you describe in hands may be attributed to Arimidex. Arimidex can also cause a very general heaviness in the legs if you aren’t moving. And I don’t mean that you don’t exercise it just when I sit for a period of time I’m very numb and heavy when I rise. Pain Dr said 30 minutes of cardio 5 days a week. I’m sure you already do this.

    I went to PT for my reconstruction, guy was brilliant helping me with issues around my recon. I asked him about neuropathy and he was kind of like not much you can do for it if it’s general numbness. My MO claims it will go away but can take years. Not a lot of definitive advice huh? 🤣

    I do think some of my issues are exacerbated and even caused by Arimidex.

    Good to hear those supplements are working! And you are still really early out of chemo. You definitely have hope of it resolving,mine is 90 percent better!

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited March 2019

    I originally had some PN in my feet from diabetes. The people on the ADA boards felt AlphaLipoicAcid R was helpful. I tried it, didn’t notice anything. Then came a severe allergic reaction to taxotere, which gave me CIPN in my lower legs, feet, and hands.

    From what I’ve experienced, nothing will help. Mine is annoying but doesn’t stop me. Part of my “new normal “ I just keep going.

    The nerves have been damaged, from whatever the cause. They can regenerate to a degree, but will never be the same.

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  • HikingLady
    HikingLady Member Posts: 650
    edited March 2019

    CBK Thank you so much for sharing all this. My MO assures me that this type of neuropathy is absolutely associated with Taxanes, and not with AI's. He cited a lot of research and support for this conclusion, and I found other research that concluded the same. So, I'm accepting that it's a post-chemo issue. Sigh.

    I play classical piano with a cellist and violinist as one of my hobbies. I can still play, but my fingertips feel WEIRD, and disconnected. I am grateful that I don't have pain, and the foot neuropathy/numbness during chemo hasn't arisen after chemo, so it's not affecting my mobility. I can't really sew with a needle (well, I can, using pliers to hold the needle!), or pick up a tiny object, and my hands just constantly tingle and feel asleep. Except occasionally when they don't, and then it always returns. It seems slightly better after starting the supplements.

    I keep wondering whether nerves will regrow and heal (lengthy but eventual resolution of neuropathy), or whether the chemical signals are permanently destroyed (no recovery) or whether they need the help of those supplements and are not as effective due to chemo damage (temporary issue), and also whether bio-feedback use of fingers (tapping, moving them, etc.) can help the signals return to normal.

    My MO and triage nurse at oncology clinic say "Yes, all of these are possible, and we just don't know." One more thing to accept and be patient about. They've told me: every body is different, as far as how chemo affects us and how permanent those effects are.

    I do work out every day for about an hour. Yes, I certainly have a heaviness and stiffness in joints since starting Anastrozole, and daily exercise is my very best medicine for all that.

    It's VERY heartening to hear that you're feeling so much better now that you're much more than a year past chemo.

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  • CBK
    CBK Member Posts: 611
    edited March 2019

    I bet playing the piano is very therapeutic on all levels for those fingers and hands. My MO told me to squeeze those stress balls. Not a particularly well thought out response to my plight - but that WAS my MO. May I emphasize WAS! 🤣

    I was sent to PT for neuropathy as well. I went through one very incomplete evaluation at Kessler that left me thinking if this is my PTs level of enthusiasm and commitment to my situation I’m not feeling very confident. But there is a specific program at Kessler for cancer patients and their issues post-chemo. I just felt that so many different things were slamming me at once, I couldn’t decide what to address first.

    I chose to go to an acupuncturist that treated the multitude of issues I was dealing with. The neuropathy was top of the list, and I definitely think it was worth my time and money. He said something to me about a year ago, that stuck with me and it has come up again in my support group and other places. Stagnant energy. Stagnant energy can cause a host of problems. For me between my chemo, surgeries and such I must have accumulated a boon. My first acupuncture session was insane; my whole body shook and I had a deep emotional release. I asked my acupuncturist, “what was that?” His reply “ stagnant energy”.

    I know you want a definitive answer and I felt the same way at your juncture. I would drop cellphones and shatter them, trip up stairs, I had pain in hands and even my feet felt bruised. As I look back today because of your post I’m not 💯 but I’m sure not where I was a year ago!

    Keep me posted on your progress.

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