Nerve damage caused by chemotherapy

Hi , I was diagnosed with the same cancer as you but I had a different chemo treatment although Rituximab was built into my chemo treatment.. I ended up with nerve damage to both my hands and upper right leg from hip to knee.. I got CAPCACIAN cream from my gp which really helped with it , if you need a shoulder someone to listen to you I'm here , I wish you well with the rest of your treatment Xx

Good morning Loulabel vincristine is a very powerful drug and I also had it as part of my R-EPOCH. By the end of my 6 cycles the Peripheral neuropathy (nerve damage) in my hands was excessive. I could not safely hold anything hot, I could not dress properly, do up buttons. I was using a screen pen wrapped in soft cloth to use my phone.

Some consultants will reduce the vincristine to help overcome some of the Nerve Damage issues but I was told that I had to have the full force of the treatment as my chemo was just a steppingstone to allow me to go into my Stem Cell Transplant (SCT) and if the chemo did not open the door correctly the SCT would not work.

I then had high dose chemo for my SCTs so my Nerve Damage was further compounded…….. but after my treatments were complete and I had some healing time for my body I was back playing my guitar.

I do have permanent nerve damage in my neck where my mass was but some regular stretching exercises keeps this under control.

From talking with lots of folks on here and actually ‘talking’ on the Support Platforms run by Lymphoma Action most people find the PN to be temporary and will pass once treatments are completed. But some do have long lasting challenges that have to be navigated.

Let’s look for this not to be a problem for you ((hugs))

Thank you so much for your replies. Gypsy Rover, was your nerve damage permanent or did it get better after the treatment has finished? 

I had a rather hefty dose of Vincristine in 2008. I had nerve damage in hands and feet, as is normal. The feet were worse and did recover, but not fully. Even with subsequent diabetic neuropathy, I am still ambulatory. My hands improved more, however did so slowly. I think the trick is to constantly exercise them by use. Hobbies, gardening, card playing - whatever requires you to use those fingers. At first, when I tapped something, it felt as if there was a spring suspended in my fingertips which vibrated for a moment. That sensation went way - I do not remember how long it required, but we are all different and with determination, function should be decently recovered.

As to your other concerns, if you are a worrier (and who is not?) what you might consider is writing those worries down on a tablet as they occur to you. Do so daily if need be. As time passes go back and review the worries and strike out those which never came to pass. I believe that you will strike almost all of the worries out, and those which remain will not be a serious as you feared. Writing them down gives you a sense of control over them - especially as you strike them out. And, doing all of this can be a great use of that nervous energy. If it works, all the better. If not, then little is ventured. 

I got neuropathy from chemo in 2018 and it hasn't gone. My fingertips feel tingly and odd but it doesn't stop me from doing anything. I still type and play musical instruments. My feet are worse and my toes feel numb but still I can walk and do what I've always done. I just look more clumsy than I used to be.