When Lucky Is a Matter of Degree (Part 2)

It was June 2007. My doubles partner and I won our tennis match at a district championship. Our United States Tennis Association (USTA) team had two more matches. I wanted to sit them out.

Our captain thought it was odd. I always wanted to play as much as I could.

Since I had just played for almost two hours, I didn’t make much of it.

Fatigue as a sign of relapse

I thought it was normal fatigue. But I found out several days later that I was relapsing.

In a previous post, I discussed the shock and anger. If I remember correctly, the first words out of my mouth were, “But I was going to do a triathlon.” I was upset that I wouldn’t be able to do it. My doctor said they would get me back on my feet.

The missed triathlon was the least of my problems.

Preparing for stem cell transplant

I learned that I would need more chemotherapy to prepare me for an allogeneic transplant, using stem cells from a donor or from cord blood.

I got a new doctor specializing in transplant medicine.

Allowing that it wasn’t a scientific explanation, he told me that three basic subgroups of AML exist.

They are good, intermediate, and bad. (Another way of saying it is favorable, intermediate, and unfavorable cytogenetics.)¹ He said most fell in the intermediate range. Mine was one of them.

He told me I would receive a “mini” transplant. He added that there wasn’t anything “mini” about it. He meant that I would receive chemotherapy but not radiation.

He would look for a donor from the National Bone Marrow Donor Program, now called Be The Match.

According to the Dana-Farber Cancer Institute, “Mini-transplant patients receive lower doses of chemotherapy than are used in a full-intensity, or myeloablative, transplant, and, in general, receive no radiation therapy.”²

Understanding my test results

Some other factors worked in my favor.

I had a normal karyotype without an FLT3 mutation. (I’ll explain in a minute.)

I learned about this in 2014 when I read what my team wrote about me in a summary called Complex Case Study: Four Stem Cell Transplants for Acute Myeloid Leukemia.³

A friend who was diagnosed around the same time, with the same disease, asked her doctor for this kind of detail. I didn’t want to know. I was already overwhelmed. I thought it would be too much information. Turns out that if I had known, I would probably have been comforted.

But what is a normal karyotype without a FLT3 mutation?

Let’s break it down.

What is a karyotype?

Normal is the easy part.

Normal is good, unless you are talking about intelligence or test performance and would rather be above normal.

But what about karyotype?

It is another name for chromosome analysis.

“A karyotype examines a person's chromosomes to determine if the right number is present and to determine if each chromosome appears normal,” according to a website explaining lab tests.⁴

Next, let’s look at “without an FLT3 mutation.”

How do FLT3 mutations relate to AML?

Being without a mutation sounds good.

So what is an FLT3 mutation?

It is a bad thing to have if you have acute myeloid leukemia.

Authors of an article, Targeting FLT3 Mutations in Acute Myeloid Leukemia, explain:

“The FMS-like tyrosine kinase 3 (FLT3) pathway has an important role in cellular proliferation, survival, and differentiation. Acute myeloid leukemia (AML) patients with mutated FLT3 have a large disease burden at presentation and a dismal prognosis.”⁵

Looking at my prognosis

For a non-scientist like myself, it still only makes partial sense.

But the words “dismal prognosis” are easy to understand.

No FLT3 mutation, better prognosis.

As I wrote in Part 1, it was bad luck to get leukemia, but it was good luck to get the kind that I had.

Editor's note: Newer treatment options that specifically target the FLT3 mutation have have been approved for FLT3-positive AML patients.