Lingering side effect from chemo a real pain

The acupuncturist said yesterday that it's good that the needles she put in the soles of my feet made me jump, because people with really bad neuropathy don't feel anything.

I'm not sure if that was encouraging or not because I'm upset that instead of getting better, the neuropathy in my feet has gotten worse.

She said it could be the heat, so I'm hoping that's all it is. Out of all the things that they can do for chemotherapy side effects, curing neuropathy is one of the most elusive. A doctor in the hospital told me to try cocoa butter. I don't think that helped. The drugs that sort of work are intended for other problems, such as the gabapentin (Neurontin), which is an anti-seizure medication originally intended to help manage epilepsy but which is also used for nerve pain and other problems.

Dana-Farber graphic

It is called CIPN, chemotherapy-induced peripheral neuropathy. Nerve damage to my feet. I don't think that in the past almost eight years they have ever felt totally normal. At best I have a little tingling. Sometimes people say I'm walking gingerly, and that must be the reason. I can think of at least one person who asked, "Why are you walking so funny?" and it was actually a doctor in my family who knows what I have been through. This I don't appreciate. I got nervous when I looked it up and saw that it can get so bad as to interfere with activity.

Interestingly, like a person who loses his or her (just can't say their, sorry, even though it's supposedly OK) stutter when singing, I don't have it that much when I run around.

I originally took three Neurontin a day but cut back to two when it seemed to get somewhat better. I have an email in to Melissa to see if she wants me to go back to three or try something else. One time I tried to go off in an effort to cut back on meds, and once it got out of my system I started waking up at night with sharp knife-like pain in the bottom of my feet. I went back on the drug. Another time when I ran out for a few days, I was late on picking up the refill because I thought that since my feet were OK it didn't matter that much.

I started to feel AWFUL. My stomach hurt, my head ached and I felt depressed. It occurred to me to look up gabapentin withdrawal symptoms and those and more were there, including even suicidal thought. I realized what a strong drug it is.

The list of integrative therapies is super long and kind of confusing.

I'm going to wait to hear back or maybe get some cocoa butter and try it again.