neuropathy

I'm wondering if anyone has experienced neuropathy caused by chemo. If so, has it improved? or even disappeared over time?  Also, is there anything you do to help with the symptoms.
Mine is not so bad, but it definitely affects physical activities. It developed in my hands and feet about one month before my chemo treatments were done. 

Comments

  • I did have neuropathy after my first chemo cycles but it was quite mild.This was just in my feet not hands.It eventually disappeared and although I have since had more chemo it did not return.
  • Hi everyone - yes I still have tingles in my toes - it seems to take so long and I'm told it may stay - hoping for it to be a gradual get better
  • thanks, @UnPickNot. I will continue to be patient. I'm 6 months post chemo and I still can only walk short distances. If I walk or stand too long, my feet get really sore. Now that I've heard how long it can last for some people, I have a better understanding.
  • I do have a slight neuropathy in my toes and in the heel of my left foot - I didn't get any in my fingers. The doctor told me that nerves regenerate at the rate of about a millimeter a year - so it will be slow. The amount that I have is not debilitating and I usually feel it more at the end of the day and quite often in bed.
    Is Alpha Lipoic Acid a recommended supplement to help the neuropathy?
  • Cannabis oil is the best for neuropathy!  
  • I'm 2 years post treatment and still have some pain in my hands and feet. Worse in the mornings after lying in bed all night. It limits somethings but I find if I take small breaks during an activity it helps a bit.
  • I'm trying 100 mg Vitamin B6 / day and 200 mg /day of N-Acetyl-L-Carnitine.  My Dr recommended these over the counter remedies. Vitamin and Health stores carry them. Im finding that these relieve burning sensation but not numbness. Take with food or they make you nauseous. They cause flatulence and diarreah but not a concern after getting constipation from chemo. 
  • Hi all, I developed severe neuropathy during chemo and now 2 years post chemo I still have it. Mostly my feet and lower legs but if really fatigued my hands and lips and tip of my nose. I also deal with rheumatoid arthritis which has complicated the issue for my feet particularly. When the inflammation is bad the neuropathy really kicks in and vice versa. I have numbness in 4 out of my five toes and some of the base of my feet and tingling up my lower legs. I am on pregabilin because the pain was so severe that I couldn't walk much or have anything touching my feet. My gyn oncology team have suggested that it may not get much better. I really watch my fatigue levels now and find that gentle foot massages releases the tension in my feet. I must admit this has been the most annoying side effect of chemo and has changed a lot of my activities. I am handling it and I know we all have different reactions to the chemo - the neuropathy was the worst and continues to be my biggest struggle.
  • Hi @FionaB60.  You have a rough time with this, particularly on top of the arthritis!  I gather the drug you are on along with the foot massages do help a little bit. I'm sure after 2 years you have received a lot of information about this, but here are a couple of websites, if you haven't come across them already.  
    Memorial Sloan Kettering
    https://www.mskcc.org/blog/managing-chemotherapy-induced-peripheral-neuropathy-after-treatment#treating-the-effects-of-neuropathy
    National Cancer Institute in the U.S.
    https://www.cancer.gov/about-cancer/treatment/research/peripheral-neuropathy

    Have you been seen in a pain clinic at the cancer centre?  You say you are "handling it".  What does that mean?  You mention you really watch your fatigue levels.  Anything else?
  • Hi @Marilyn what I mean by handling it is that I don't let it get in the way, mostly, of my normal activities. I also wear shoes all the time. First thing in the morning I put on my crocs so that I can get moving for the day. My feet work better when I have shoes, so no more bare feet for me, except in the shower. I also have a non-slip mat in our tub so that I can get the most grip while standing there. It really is all about adapting to the new reality of life after cancer treatment.

    Thanks for the articles, they are helpful. I keep looking for more information to keep on with this new normal of mine.
  • Hi @FionaB60.  Sounds like you've really learned what works and how to take care of yourself.  Do you have further thoughts about this @JaneWest @Nanakaw @kastoyles @Sunflower @KarenL @UnPickNot @Flowergirl ?
  • My GP referred me to a neurologist for assessment. I do have some nerve damage, but nothing marked. He also wanted a complete blood assessment to be sure there was nothing else causing the neuropathy and everything seems to be OK. I have been getting reflexology foot massages for a couple of months and it seems to be helping. The worst spot that I had on my heel seems to be much better.
  • I just keep moving; I'm doing yoga and pilates reformer which help I'm sure. Impact activities aren't great, so walking short distances and for short periods is best for my feet. I wear socks most of the time to keep my feet from getting cold. I also massage my feet with cream. And definitely the footwear is crucial! Nothing touching the toes. Oh, and crossing my fingers! lol
  • I have to wear shoes all the time and have found a foot cream that helps with the pain. My doctor has found that I have arthritis in my hands so I have some pain pills for the days when it is really bad. I try not to get my feet and hands too cold or they are very painful.
  • I am so helped by the comments I have read here, as neuropathy in my feet has been a challenge for me pretty much since the beginning of treatment. It is more intense now at the end of chemo. My GP sent me for cannabis assessment and I was approved for medical use. My daughter made me a salve from the dry cannibis - it really works quickly and effectively (it reeks a bit 😤), and I can also take the oil form sublingually before bed to head off the night neuropathy. 
  • I have neuropathy in both shins, both feet and fingertips. It’s coz I had chemo 2 days ago. I’ve been using cannabis oil and it has been a huge help. Glad to off the opioids that we’re not even taking the edge off. The cannabis oil (cbd oil which doesn’t make you high) is fantastic ! 
  • Hello @Linda - exactly my sentiment. The cannabis seems to work as both a pain and neuropathy blocker and an antiinflammatory. Glad to learn that it helps you to use the CBD-rich format. I read your intro story and am impressed at your courage and resilience. Hope you have more treatment options available and that you will continue to share your journey in this dialogue. best, Judith
  • Hello all I also have mild neuropathy in my left foot.  My last chemo was April 2017, the oncologist suggested trying vitamin B complex daily.  I have been taking it for 3 months and it does seem to help. I walk an average of 8 kilometers or more daily, therefore I was quite concerned with pain in my feet.  
  • @cathy1960, I too, finished chemo in April 2017. I have neuropathy in both feet, sometimes more so on the left. Sometimes it feels like there are little balls of aluminum foil rolled up inside my shoes. The strange thing is though, when I'm in Zumba class, it doesn't bother me so much. Maybe it's because the zumba steps can be a bit complex, and I'm so busy memorizing the combination, that I'm totally ignoring any feedback from my feet? 
  • Elsie13, mind over matter! If Zumba works for your neuropathy then I say it is a win win! Talk to your doctor about supplements like the ones talked about in this chat stream. Maybe there is something here that will help you with your little aluminum n
    balls. 
  • FlowergirlFlowergirl Mod Vol
    HI @Elsie13 and @cathy1960 and @UnPickNot - I also still have the tingly toes (2 years onward) - I find doing less impactful activities best and a warm or cold soak of the feet when they are really giving me trouble seems to help.
    Someone suggested a cream that diabetics use for nerve pain- I'll need to look into that.
  • 4 years into this journey and I have been putting up with the ice block feet - duh - put some socks on! 
    Never think that sharing the small or obvious isn't going to help someone else!
    BTW I love my UGGS all year round. Would never have thought that before as I always had such warm feet. But they are my slippers (I do not wear them out of the house) and I never wear socks in them - always bare feet. My feet love them. But man oh man - look out socks and sandals - here I come!
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