leukemiaribbon

The Best News I’ve Heard Regarding My Leukemia

“Oh my gosh.”

Katie and I were two miles into a trip to San Antonio when I reacted to an email reply from Dr. Cortes.

“What?” she asked.

I tried to pause the podcast we were listening to. This was big news.

“What is it?” she asked again.
“Hold on,” I replied, frantically trying to stop the audio.

“I wrote Dr. Cortes this afternoon to see if he’s received the results of my bone marrow aspiration. He wrote me back,” I told her.
“What did he say?” she replied.

Six months after taking Sprycel, a second-line leukemia drug, they examined 20 cells found in my bone marrow. 20 out of 20 were Ph+, which means the Philadelphia chromosome (the heart of chronic myeloid leukemia) was present in all of them. My medicine wasn’t working.

In February, I began a clinical trial for an unnamed drug that was said to fight the mutation that was preventing FDA approved medications from working. In the meantime, my doctor suggested initiating the process of finding a suitable bone marrow transplant donor.

The trial caused migraine-like symptoms and ultimately led to damaged vision. It didn’t work. My only hope to avoid a transplant was to participate in a different phase three trial that was closed to new patients. That drug is called Ponatinib.

Dr. Cortes sought permission from Ariad pharmaceuticals to use the drug through compassionate care. It was the last bullet we had.

The plea worked.

Ariad agreed, and I began taking 45mg of Ponatinib on March 25. On June 18 we returned to MD Anderson for our first significant look to see if my medicine was working. They took bone marrow liquid – the cells that have just been produced by the marrow and haven’t yet made it to the blood stream – out of my hip and sent it to a lab. At the three month mark, we hoped for some progress, anything less than 20/20 Ph+ cells is great.

I waited three weeks for the results, the longest three weeks of my life.

The results were contained in Dr. Cortes’ email:

The results are great. None of the 20 cells counted has the Philadelphia chromosome. Before we started we had all 20 with it, so this is a great response very early. Congratulations!

My heart skipped a beat. I just received the best news I heard in a long time. Ponatinib is working, and it’s working well.

0/20 cells they examined were leukemia cells. They were normal, healthy, cancer-free cells! It’s a great sign for the bigger picture. My body is heading in the right direction.

The news brought Katie and me to tears. We’ve been down such a long, hard road, with bad news at seemingly every turn. The joy of feeling grace and answered prayer was overwhelming. Our hope has been renewed. We were reminded of God’s grace.

We’re still waiting on the results of a PCR test, which is a lot more sensitive and looks at the response rate on a much higher level. It’s the best gauge we have to determine the number of leukemic cells in my body.I’ll post that information when I receive it.

I still have a ways to go, but we’re finally on the right side of the mountain.