Burning Feet/Scan Results/Treatment #30 TDM-1 #13

January 12, 2015/Scan January 29th

Though I didn’t want to, for fear my dosage of TDM1 would be reduced, I told the P.A. about my ever increasing neuropathy (nerve damage). My fingers and toes have had prickly sensations ever since I was treated with Taxotere. Over time the pins and needles have become part of my daily life. Sometimes I am highly aware of it; sometimes I am not. Recently though, my toes have started to feel like I scorched them with boiling water. During the day, the burning is there, but I can tolerate it. At night, though, when I slip into bed--WOW--the throbbing and burning set my toes on fire! The burning is lessened by morning, but my feet feel swollen making it painful to walk.

The P.A. told me there is no good treatment for neuropathy caused by chemotherapy treatments. I read about neuropathy before my appointment and learned the best treatment is dose reduction or stopping the drug altogether. Since TDM1 is giving me more time for life, I fear having to stop it. We decided to go ahead with a full-dose infusion for this treatment. By the next appointment, my scans on January 29th will be read, and if there is no progression, I will continue on TDM1 but at a reduced dose.

I had no idea the kind of pain I would experience by keeping TDM1 at full-dose. When I awakened the day after my infusion my feet were ablaze. The burning sensation started at the top of my foot, went over my toes and stopped at the ball of my foot. My feet felt swollen; each step was difficult and slow. By Wednesday, I called the nurse in Chapel Hill and told her what I was experiencing. The drug Gabapentin 100mg 3 x a day was prescribed. I started it the next day. This drug doesn’t provide pain relief for all patients. I worried I was one of the unlucky ones because each day the only relief I found was from an ice pack. Again, I called the nurse who asked me to increase the dosage to 300 mg 3 x a day. By the third week of pain, I am finally feeling relief. Not complete relief, but at least I can go to bed at night without ice packs.

Along with the Gabapentin, a prescription for Voltaren Gel was sent to my pharmacist. After one week of a game of ping pong--my insurance company would not approve it since it was an arthritis medication and only had limited success with neuropathy--I decided to pay the $59.00 hoping this gel could add some relief. With Gabapentin in my body for a few days at the higher dose, I can’t say for sure the gel helped. It sure didn’t make things worse.

My appointment this Monday will be a happy one. I had scans yesterday at 10:00 a.m. At 5:30 p.m., my youngest was enjoying her jazz class. I pulled out a book and began to read. My phone buzzed, I looked down and, since I didn't recognize the number, I sent the call straight to voice mail. A minute later, I called my voice mail, and I heard the greatest news. "Your scans look great. We will see you on Monday.” That means my disease is still not detectable by CAT scan--no evidence active of disease! I get to continue receiving TDM1. My dose will be reduced which does scare me a little, but hopefully it will continue allowing me to dance the “happy dance”.