This Is My Story of Overcoming CML
by Mel D. Mann, MBA, MEd
Twenty-four years ago, I was a 37-year-old U.S. Army major stationed in Michigan with my wife and five-year-old daughter. My life was simple, and despite some run-of-the-mill back pain and fatigue, I thought I was healthy. Then my world was shaken when I stopped by my doctor’s office on a cold January day in 1995 to pick up the results from some tests I had undergone just before Christmas, hoping to find a resolution for my back pain.
These test results showed that I was far from healthy. I had a terminal form of cancer called chronic myeloid leukemia. And not only that, but my doctor estimated that I had just three years to live.
I thought about my daughter, who was just learning to ride the little pink bicycle that Santa had left under the tree on Christmas morning. In three years, my “Daddy’s little girl” would be just shy of nine years old. When she grew up, would all her memories of me be faded and fuzzy? Would she even have many memories of her dad at all?
I sought out multiple doctors and second opinions, desperate for a different answer. But they all said the same thing – three years to live, three years to live, three years to live, unless a bone marrow donor could be found.
My doctor told me the only cure for my CML was a bone marrow transplant. The transplant had a 50-percent chance of success. There was also a 50-percent chance that my body would reject the marrow and I could die from complications of the procedure.
My initial reaction to this news was denial. I sought out multiple doctors and second opinions, desperate for a different answer. But they all said the same thing – three years to live, three years to live, three years to live, unless a bone marrow donor could be found.
That’s when my race against time began. I started CML treatment at once – daily injections of interferon that I hoped would sustain me as I desperately searched for a matching donor.
None of my relatives were a match. Nor were any nationally registered marrow donors. I found out that, to be a match, a donor must share the same ethnicity as the recipient. And there were very few African Americans on the registry.
I couldn’t just sit and wait for a match to come forth. So I contacted the American Red Cross and started organizing marrow drives, starting with military bases and spreading out from there. I knew my chances of finding my own unrelated marrow donor were slim, but there was still a chance. While I had no way of knowing who might be a match, I knew I could expand the potential pool by building up the marrow donor registry.
By 1996, I had medically retired from the army and moved my family to Atlanta, GA, to be closer to my wife’s relatives. Marrow donor recruitment still dominated my time. It felt good knowing that lifesaving matches were being found through these marrow donor drives. Just not mine.
That same year, I went to a marrow drive in nearby Columbus, GA, hosted by my aunt. A local businessperson who had seen my television promotion for the drive stopped by. He had an intense look in his eyes as he told me his story of surviving hairy cell leukemia. He too was given a poor prognosis, but he said the doctors at MD Anderson Cancer Center in Houston, TX, turned his leukemia around. He told me in no uncertain terms, “You need to get to MD Anderson ASAP.”
It felt good knowing that lifesaving matches were being found through these marrow donor drives. Just not mine.
A few days later, I was on a plane to Houston. My new doctor happened to be the first to use interferon for CML, which was the first-line therapy at the time. He reviewed my records and said, “We still have time! I’m going to increase your dose of interferon and put you on clinical trial after clinical trial.”
As the months ticked by, I became frail and fatigued. My hope started to fade as each drug stopped working. I continued to organize marrow drives. But, still, I had not found my match.
Before long, I had arrived at the three-year mark of my cancer diagnosis. With hope dimming, I asked my doctor when we could expect a new drug. He said a drug called STI-571 was close, but it wasn’t quite ready yet. He told me I was second in line at MD Anderson to receive the drug if it was approved.
Eight months later, in August 1998, MD Anderson got the go-ahead to start a clinical trial on STI-571. Three years after that, and six years after my diagnosis, STI-571 was approved by the FDA, as Gleevec, to treat chronic myeloid leukemia. Now, over twenty years have passed, and I am the world’s longest living Gleevec survivor.
I was diagnosed at age 37 and told it would be a miracle if I lived beyond age 40. I’m now 61 years old. My daughter did learn to ride that little pink bicycle, and she celebrated her ninth birthday with her father there. She’s now a doctor, and I couldn’t be prouder.
My wife of 34 years and I continue to recruit marrow donors for the National Marrow Donor Program’s Be The Match campaign. I am grateful for the countless people who supported me on my journey. They gave me hope for healing that I’d thought could only come from a donor on the national marrow registry. Instead, my healing came from a drug that was only a gleam in some researcher’s eye at the time of my CML diagnosis. I’m living proof that funding and supporting cancer research saves lives.
Mel Mann is a chronic myeloid leukemia survivor living in Atlanta, GA. You can follow him on Twitter at @MelDMann.
This article was published in Coping® with Cancer magazine, January/February 2019.