Hello everyone,I am currently undergoing treatment for metastatic bladder with secondary liver, the treatment is ev+ pembro. I know one of the side affects from ev is the nervous system but I was wondering if anyone else is having the same issues and if there is anything to alleviate the tingling, many thanks.
Sorry to hear about the tingling. I suggest you talk to your CNS and the the oncologist about this.
I did not have EVPembro but after my chemo and cystectomy did have a different immunotherapy called Nivolumab which gave me similar symptoms to yours. I mentioned it to my oncologist at once. (I'm telling you what happened with me below but of course your oncologist must decide what is appropriate in your case.)
At first, my oncologist suggested I carry on with the infusions and take Vitamin B complex tablets but they didn't seem to help much. Then, after 3 doses of the immunotherapy tthey decided to stop the course & gave me steroids to dampen it down because for me it was belt and braces after the tumour had been removed. (She said she wanted to leave herself options in case of recurrence and if I had been diagnosed with recurrence they would probably have kept on using it and not used the steroids.)
I hope this helps. The tingling was from my nerves and they are still quite sensitive. One thing that soothes the tingling is massage which also encourages blood flow. In fact my husband still does my lower legs and feet every morning for me. Others use ice I believe.
I also got some special orthotics made by a podiatrist - I have been using custom orthotics from well before my cancer as I walk a lot. There are special bases for peripheral neuropathy. Luckily my hands are much better now.
Thank you for the response, my treatment is currently on hold and my oncologist is waiting for the outcome of my next ct scan, I'm hoping it comes back satisfactory with no changes from the previous scan,this will help me in making a decision whether or not to continue with all the treatment or not,i have just started using a massage gun on my legs and hopefully this will ease things a bit and will look into orthotics aswell,once again thank you for the h.
