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mazgam's avatar
mazgam
Member
23 days ago

Neuropathy

I would really like to connect with someone who has been on a similar journey. I was diagnosed with TNBC in April 2024 . Had chemotherapy, lumpectomy and 3 weeks of radiation. The Neuropathy began as I finished chemo and has not improved. I find it difficult to use my hands and to walk. I find it difficult to explain to friends and family that I cannot cut up vegetables or turn pages or pick up anything small. I feel quite isolated as I'm unable to drive any more or ride my bike which I relied on for exercise. The loss of of independence is just awful. Thank goodness for my precious husband who I now rely on. I am 73 and just need to know that I'm not alone in this terrible journey.

4 Replies

  • mazgam​  the neuropathy is annoying to say the least. Mine has improved in the 8  years since the dreaded chemo. Though still have the numbness. I have adapted to how I do things because im on a keyboard for work and other things I amy keeping them active. The physio i saw got me to learn to be more conscious of my feet and walking. The balance part I get a bit forgetful on that one and bump into things especially if im uneven surface. And im not great at walking or stepping backwards. My walk now is more like a march. The painful stinging sensation is not like it was initially either  mostly when I have stayed still for to long. Other advise i got is to make sure my footwear was properly fitting. Learnt the hard way blisters from shoes rubbing. I only wear natural fibres for socks and check my feet regularly   You should be able to podiatry. I cannot let my toenails get long. I hope you find what works for you and that in time the horrible sensations settle down. It did take a couple of years to get to where i am now. I still have silly mishaps. Its hard to be 24/7 on top of things. I walk slower have a disability parking permit which i use just when I need to. 

  • Hi mazgam​ 

    My sympathies - neuropathy is a pain (no pun intended). I've had it for 12 years - in many cases it improves when treatment stops but not all. I'm luckier that my hands are relatively untouched (a tiny area just behind my nails has affected sensitivity) and affects really nothing. Typing, buttons are all fine. My feet however have seriously distorted sensation. Rarely pain, although they were very painful for about six weeks when the neuropathy first hit (Paclitaxel was my trigger) but the sensations are very varied, rarely the same in the same conditions and can affect my balance - think of feeling as if you are walking on a trampoline or in three pairs of very thick socks. Mind over matter has worked so far, although I have packed in running - I was never a runner, and I am now 79, so it's no sacrifice - but my brain can't out think my sensations at speed, and my sensations say I am going to fall if I run! However lately my feet have been worse, more uncomfortable - contrary to all conventional wisdom, my feet are much better when it's cold and worse when it's hot, particularly humid. So I don't know if it's been a bad summer or something else. My doctor can't advise, my podiatrist can't find any reason and a very thorough neurologist is putting me through a battery of tests! We'll see. Massage helps, warmth doesn't (for me), exercise is good for everything but harder when your feet are really uncomfortable. I hope you find some workable solutions. Best wishes.

  • I am very sorry to hear about the impact neuropathy has been having on your ability to be independent and your quality of life. 
    My neuropathy came upon me in late April 2023, about half way through my Neo adjuvant chemotherapy.

    I went onto have a lumpectomy, radiation therapy and another phase of chemotherapy and immunotherapy, but my oncologist thought the primary culprit was the DoceTaxel that was one of the drugs I had during my neo adjuvant treatment, prior to surgery. 
    Your neuropathy in the fingers sounds very familiar and please do know you are not alone at all. You have this community of people here many of whom will relate to your post.
    I recall thinking I might not be able to do my own pyjama buttons up when I went in for my lumpectomy and later my fingers struggling to get my credit card out of my wallet or not being able to separate cash. I thought my sewing days and like you, bike riding days, might be over.

    Fortunately I took great heart from an article I read about the same time about Kat Goodall, a young Australian surgeon who had bowel cancer treatment and experienced neuropathy.

    Have you found anything helps so far? 

    At first I went to an oncology exercise rehabilitation program and then tried (as a beginner) gentle flow yoga. I feel that exercise, and the yoga especially,  helps the circulation and feeling in my feet and my balance.  Every evening when sitting down after dinner I would get very uncomfortable pins and needles, even the odd electric shock type of pain. This has really waned (it’s now 1 year since my active treatment finished).

    The gradual improvement over time has been a comfort to me and I hope you begin to experience some changes for the better. I have been quite intentional about exercising in ways that keeps the pressure and movement on my hands and ankles, so I have been doing more swimming and seated rowing.

    I can pick up things that are a bit finer now, and have been sewing. The place I notice it most is the kitchen and moving things around with oven mitts! Often unsuccessfully. 
    I am not sure if this resonates with how you’re experiencing neuropathy. It is very different for everyone but I am sending you big hugs - the side effects we didn’t anticipate can really impact us.  I hope you too might start to see improvement over time.