Need hope: Neuropathy from chemo

@varg4258 and @mustang08, several members are talking about chemo-induced neuropathy in the Cancer: Managing Symptoms support group (https://connect.mayoclinic.org/group/cancer-managing-symptoms/)

Some chemo drugs like oxiliplatin are known to cause peripheral neuropathy. It is often temporary and can improve after you finish treatment. For some people, it can be long lasting. For my dad, they monitored his neuropathy closely because he also had type 2 diabetes, which can increase the risk of the neuropathy being permanent. After several rounds of chemo (5 I think), they reduced the amount of oxi in the drug combo to reduce the risk of the severity of neuropathy.

Varg, do you have pain with the neuropathy or numbness or both?

I had to take Capecitabine (Xeloda®) + Oxaliplatin. Both feet and hands are very sensitive to cold temperatures and unable to walk on tile or hard wood floors. Legs feel heavy when i try to cross my legs while laying down on bed and it gets stiff. Feet majority of the times feel like bending sand bags. Hands feel like i got tiny pebbles under my skin when i rub my hands together. I have pain when my legs get stiff and cold sensitivity.

I had daily oral chemo, 2 persistent tumors primary in otherwise unremarkable liver. I developed hand and foot neuropathy. I was constantly cleaning glass and food off the floor with the "dropsies" . Forget making a phone call, I can laugh now, that is almost gone. My feet have a swelling of the bottom of both feet. No diabetes or heart disease or any other causes. I cannot walk some days. I put on weight from immobility issues. I can walk a bit now, it is painful to walk very long, fast, or far, but a walker helps. I can feel the tingling the day before I have "a good day " I ended chemo in 2018, my new skeptical doctor didn't call after my mri so I figured it was gone and sure enough, his report stated NED, unremarkable liver. I was told to figure 6 months for every year of cancer, and 5 years besides to overcome the side effects of chemo.

I don’t know where you live? However, I know there are clinics in the Metro (MN) who specialize in neuropathy. I would consult those. Mayo was never helpful with neuropathy in my experience-.

I know when I go to my oncologist I tell them my pain level is 8 or more it really doesn’t get addressed. I was prescribed gabapentin but i am not using it. I did try it a couple of times but I am so drowsy dopey in the morning I don’t feel like I can drive it lasts about half the days. Nothing else has been discussed except I told him I take ibuprofen ☹️

Have you seen this?

FPN Webinar: Chemo-Induced Peripheral Neuropathy
https://youtu.be/eNkDf9ezXFo

I also had to take Capecitabine. I had terrible hand and foot syndrome. Ask your doc first, but mine recommended soaking in epsom salts and urea cream. Gabapentin did help but I didn’t want the drowsy side effect. My Mayo doc was very responsive to my hand and foot pain, and prescribed Lyrica instead. That helped a lot. I started it one year ago and used it for 4 six-week cycles. My feet are all better, but my palms still get very hot.
To anyone who feels your doc is not responsive, keep asking your questions until you get an answer. Email them with questions you think of after. Go to your primary care doctor for help, too. As my sister, a nurse of 31 years says, “They work for you.” I am always persistent. I have a wonderful relationship with all the Mayo staff whom I see regularly. I feel very well-cared for at Mayo.

I have neuropathy from chemo that I had three years ago. My feet were badly damaged from this and along with the neuropathy and dropped feet I will never walk without a walker. Your mother probably just has the neuropathy so it depends on how long it takes the nerves to heal. Some have better success than others so learning to adapt to a walker is the best plan.I know it took me a while to realize I will always need it. So now, it is apart of me and who I am.
It can be a very debilitating illness so one needs to find the things that bring you joy in life. My daughter is my biggest supporter and she always has a good outlook on life which reflects on me. So just being there for your mom and loving her will help her a lot. Wishing you all the best. Hugs

No I haven’t thanks for posting it

I ended chemo in February and the neuropathy got worse in my hands, fingers, legs and feet. Still is a problem in fingers and feet. No pain but no feeling. Similar to what you feel if they were asleep, pins and needles.
A nurse suggested that I try acupuncture, so what the heck, I might as well try it at this point if someone told me to cure it I had to cut off a chickens head and wave it over my head I’d try it.
Not taking it lightly it is tough to live with. I drop things all the time and am unsteady on my feet because I can’t feel them so I walk carefully.
Doctors have no answers that I’ve talked to, time will tell, is all I get.
Good luck.
I’ll let you know if the acupuncture works. If not, where can i buy a chicken?