As I headed into consolidation (phase 2 of my protocol) I was in remission and had a 90% survival rate. Chemo was wrecking my body, and I felt like dying everyday, but as long as I stuck with the chemo protocol, I was going to have a good chance of survival.
The idea of a transplant always hung heavily in the back of my mind. A transplant terrified me. I had heard so many horror stories about BMTs that I equated a transplant with a death sentence. Fortunately, all the nurses and doctors on my hematology team assured me that a transplant would be unlikely.
Yet my doctors still wanted me to meet with a Bone Marrow Transplant doctor to set up a contingency plan should the worse happen and chemotherapy stopped working. I didn't want to see a BMT doctor. Despite feeling horrible from the medicine, I was sure the chemotherapy was working.
So, when I finally went to see a BMT doctor I was expecting her to tell me just what everyone else had told me: that I would never need a transplant.
Unfortunately, she said a transplant was my best option for survival.
These abnormalities knocked my odds from 90% down to 50%. No matter what chemo regiment I was on, due to the genetics of my cancer, I had a 50/50 chance of relapse. I was devastated. It felt as if I had just been diagnosed with cancer all over again.
My odds had drastically changed and I had another huge decision to make: stick with chemo and a 50% chance of relapse, or get a transplant which would lower that relapse rate to 20%-25%.
Okay, sounds like an easy choice on paper. As there is no proven cure for cancer (yet), the best you can do is lower your odds for relapse. But a transplant is biologically life changing, and has way more lifetime side effects than a few years of chemotherapy. (Stay tuned this month for more on lifetime side effects of a transplant.)
I went back to my hematologist for advice on what choice to make: chemo or transplant?
She told me more about my odds on the Pediatric Protocol, and explained to me I couldn't really trust all the statistics and percentages for the chemotherapy protocol. Adults usually didn't get ALL. It's thought of as a childhood cancer.
Check out the National Cancer Institute SEER website if you are as obsessed with statistics as I am.
Basically, all the data is grouped into two categories: age 20 and under (child) and age 20 and older (adult). This leads to my situation: a 25 year olds gets the same survival odds as an 85 year old. There's just not enough data for that middle group of 20-34 year olds with ALL.
So, on the advice of both my BMT doctor and hematologist, I chose the transplant and hoped it wouldn't kill me.
Fortunately I had a donor waiting in the wings. Check out The Odds - Part Three for more on the odds of finding a match.