Neuropathy - Long term?

[Pat94]

Earlier onc said neuropathy improves for about a year and then you have what's left long term. Just met new onc yesterday for quarterly checkup (NED - Yeah - would have really hated to go through all this and not been clear for at least 3 months). He said neuropathy slowly improves for years as the nerves slowly recover. For you long-time survivors who had neuropathy from treatment, which is correct?

[Lucy]

Hi Pat, I just found this thread.

I'm not necessarily a long term survivor yet (finished herceptin in May of this year) but I am finding that the neuropathy is getting better . . . slowly. It was so bad for a while that wearing shoes was extremely painful and made it more difficult for me to walk. I did it when I had to but it was painfully (no pun intended) obvious that something was wrong with me when I had to move in them.

I still prefer my flipflops but now I can wear normal shoes with little to no discomfort for long periods of time. The more I wear normal shoes though, the easier it seems to get.

Are you seeing any improvement at all?

[Pat94]

My fingers are better - much less clumsy. My feet don't seem to be much different but they weren't as bad as yours. I really notice it when I first try to fall asleep at night. I just have to get used to how they feel. While in socks and shoes during the day I don't notice much at all. Good luck to us all.

[suzan w]

I can't speak to neuropathy, however, even after 10 years, I am still getting back feeling, slowly and randomly, in my numb chest!!! The nerves will always try to reconnect...as told to me by my surgeon 10 amazing years ago!!

[tricia keegan]

After ten years I still find it difficult to put my earrings in and close buttons, but fine with everything else.

[Lucy]

I never really had a clumsiness with my hands / fingers that I recall, HOWEVER, I still have a strong sensitivity to cold in my fingers. I have issues handling things that have been in the refrigerator. I can be out in the cold all day long and it's fine but touching / holding something that is cold poses a challenge for me.

[twosenuf99]

Hi I am almost 5 years NED. Still have severe neuropathy in both my hands. I have just learned to live with it. I also have lymphedema which adds to the neuropathy in the right hand. I was told by my onc it would never get better. Good luck to you.

[Lisalou]

I had mild neuropathy during treatment that rapidly resolved after completing chemo. Now I have new neuropathy that neurology wants to blame on the chemo and oncology says no way, I am too far out for it to be from chemo...as I continue to try and direct my care to find the cause of the headaches and lower extremity neuropathies and facial parathesias. MRIs of brain and spine clear