Has Chemo caused on Nerve Pain and/or Damage for you? I’m worried

Hello Tristram,
I had some nerve damage in my right shoulder after getting Rituximab with the usual Cladribine. That was Nov, 22 2021, I was in the hospital for a high fever. On the 3-4th day I woke up not being able to use both shoulders. The left came back 1-2 days later. The neurologist told me I had about 2 inches of nerve damage. After a year I now have about 75-80 % recovery.
Good luck with your troubles.

Thanks for the note. As a three-time survivor of GBS which attacks the nerves, I'm more worried about nerve damage than others might be.

@tristram, I can understand your heightened concern about potential nerve damage due to chemo given your history with Guillain-Barré syndrome (GBS).

Some chemotherapy drugs are known to have a higher risk for causing peripheral neuropathy. Not all of them do. Many (most?) patients find that the peripheral neuropathy lessens or disappears after chemo ends. But some patients are at higher risk for permanent damage, like people with type 2 diabetes. Here’s more information:
– Nerve Problems (Peripheral Neuropathy) and Cancer Treatment https://www.cancer.gov/about-cancer/treatment/side-effects/nerve-problems

The chemo (oxaliplatin) that my dad got for colorectal cancer is known to cause chemo-induced neuropathy. Because he also had type 2 diabetes they watched this particular side effect closely and reduced the amount of oxaliplatin in his cocktail of drugs to reduce the risk of it becoming permanent.

Does your team know about your history with GBS? Do you know which chemo drugs you will be getting and if they are at risk for causing peripheral neuropathy?

Colleen, Thanks for the information. I don't know yet what drugs I'll be given. I'd like to find a list of common drugs used in chemo and the percentage of patients affected by each, but I don't know that such a list exists. I do plan to insist my doctor keep my history of GBS in mind as we go through this.

Yes my hands and feet are numb and tingly i had 500 hours of chemo for colon cancer

Did the doctors adjust the medications so the problem didn't continue? I'm wondering to what extent modifications can be made during treatments.

The nerve damage didn't start till a few days after I finished the chemo, I was convulsing the first day while getting the Rituximab, which they stopped giving me, but I had a fever all week and went to the ER and got admitted.

Yes and it’s awful no pain but numbness and tingling in hands and feet all the time

When said like that, 500 hours of chemo just seems ungodly. I could never do it.
I often wonder if those like you are satisfied with the decisions made and is there anything you would not do again ?
I wish you all the blessings going forward !!