Need hope: Neuropathy from chemo

I now have neuropathy in my feet as a result of chemo. My last treatment was six months ago and nothing has changed. My feet are basically numb with enough feeling in them to be able to walk slowly. I can't close my eyes while standing like in the shower or I lose my balance. I do toe stretching exercises. I also use something called PowerLegs by PowerFit. It has various settings to stimulate the bottoms of your feet. My Dr suggested it. I don't know how much good it dose but I feel better doing something.

Does anyone else have this problem?

Is there anyone in this group that has experienced a worsening of neuropathy 2+ years after receiving final dose of chemo AND after a prior lessening of symptoms? I ended chemo (5fu and oxaliplatin) in April 2019 with PN hitting hard in my hands and feet. I was told by my oncologist that this PN might dissipate over time, might go away, might be permanent, but would not increase after 6 months to a year as the chemical would no longer be active in my body. Summer of 2020 the neuropathy was still present (numbness and tingling) in my feet and hands, but was noticeably less especially in my feet. Last spring I felt the neuropathy getting worse in my feet first, but then also my hands. Over the course of the last year and a half, it has crept up my legs and arms, into my pelvis, onto my face and tongue some of the time, and I'm questioning if it is starting more in my trunk. I have been to a local neurologist, had MRIs, boat loads of blood work, nerve studies, and most recently was seen at Cleveland Clinic. The blood work has all been negative/normal, as have the MRIs. The nerve study shows pure sensory neuropathy and my neurologist has said this points to my chemo as the culprit. As this conflicts with what I had been told previously about chemo induced neuropathy, and the fact that it has not yet quit spreading, I'm struggling to accept this diagnosis. Finding other folks who have experienced something similar would be really helpful!!!

I am having lots of trouble walking th this also

I've watched "Nine Lives" at least two times. Now I'm thinking I'll watch it again. It's a favorite for me, too.

@tessie63 Carol, Thank you so much for your what you wrote and especially for your final paragraph. It is validating to think about how we are both "above ground" or "The right side of the grass", isn't it? It's a good reminder to me to make the best of every day.

Hi! I had chemo in 2020 when I was 73 for ovarian cancer and nobody at the hospital told me to expect neuropathy as a side effect. Worse pain I ever had in my feet and legs! I got a script for Lyrica and within days I was pretty much pain free. Lyrica takes a while to build up in your system before you see results. I stopped taking it when the pain went away. The numbness will probably never go away. Anyway, as to walking - when the pain was under control, about 1-2 weeks while on Lyrica, I could walk short distances and used my cain when necessary. The numbness was an issue though. Because the bottoms of my feet were (and still are) numb my balance was off which made it difficult to walk. I just started back on Lyrica yesterday because of infrequent shooting pain in my feet and legs, and leg cramps at night. I read recently that people also massage their feet and legs at bedtime with Vicks Vapor Rub. I'm going to try that tonight.
If your mother was prescribed medication it could be affecting the neuropathy. You might want to check that out.
I see people on this site have shared a lot of good information. Stay positive. Everybody has a different recovery journey.

I am so sorry to hear about your ongoing battle with cancer and I’m sure your treatment with radiation takes a toll on the emotional and physical aspects of your body. It would be nice for you to get it over with already and carry on with life.
I live in cold Saskatchewan, Canada. I prefer the warmer months here but, unfortunately, that is the shorter season here.
You are indeed lucky to be treated by the clinic in Rochester. I was there for the treatment of sarquidosis years ago. Our health care system sucks here! My friend has been waiting for over two years now to have her colonoscopy. For most of us, going to the US is just too expensive. The surgeries here have been held up due to Covid and we are experiencing a lack of nurses and doctors now to man the hospitals. Many were burnt out and just did not return. If your doctor recommends any number of tests you could wait months to get them. It’s
sad for so many who need care now and can’t get it.
I wish you the best of health in the future. You sound like a strong very upbeat person. Remember, we are both on the right side of the grass, for now anyway so we just have to make the best of each day. If I sometimes feel life is not fair I go off by myself, taking a good supply of kleenex, and have a good cry about it. It makes me feel so much better! Keep in touch.
Carol

@tessie63. I so agree that anything size cyst on an organ should be followed closely! This is especially true for ovaries.

How wonderful that you enjoy sports on TV and your hometown football. Word games are fun and having your iPad handy whenever you want makes it very easy to enjoy those.

I'm a survivor of uterine cancer - 2019 with a recurrence in 2021. At this point my treatments have been surgery (hysterectomy) in 2019 and radiation therapy in 2021-22. I haven't had chemotherapy and at this point I feel my journey has not ended so who knows what will be in my future? I have follow-ups every four months and my next appointment will be at the end of August. My radiation oncologist told me that if I have another recurrence or primary cancer in the pelvic area it would be awhile before anything shows up. They are following a thyroid nodule that showed up in a PET scan last year - it has not changed - and lung nodules that showed up in a CT scan in April this year. I go to Mayo Clinic in Rochester and I've been pleased with my care and knowing that they will follow up when they say they will.

My favorite activities are being outside - thus the name, naturegirl5. I like to putter around in my garden in summer and snowshoe and x-country ski in winter. I live in the Upper Midwest and we have lots of snow so there are always winter activities to do.

What advice do you have for how you have arrived to this place in your life with such acceptance and gratitude?

I did see this, Helen! One of my favorite movies with him. 🙃