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CML Patient Story: From Terminal Cancer to 26-Year Survivor

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Published on October 26, 2020

Mel Mann’s Story

In 1995, Mel Mann was diagnosed with chronic myeloid leukemia (CML). With limited treatment options, he was presented with a terminal diagnosis and a timeline of three years to live. Read the story of how discovering a new clinical trial in 1998 turned his fate around completely. He also shares his advice for newly diagnosed CML patients and reflections on being the longest living survivor of imatinib (Gleevec) treatment for the disease.


How A Clinical Trial Saved My Life

In January of 1995, I was a 37-year-old Army major stationed in Michigan with my wife, Cecelia, and our five-year-old daughter, Patrice. One morning before work, I sauntered into the doctor’s office to get the results of an MRI test that I had taken before the holiday season because I had been experiencing back pain. After reading the report, the doctor informed me that I had chronic myeloid leukemia (CML) and had about three years to live.

As I listened to the doctor, I thought about my daughter who was just learning how to ride the little pink bike Santa had brought her for Christmas. My wife and I were teaching her how to ride the bike and had just taken one of the training wheels off. I calculated how old she would be in three years and wondered if daddy’s little girl would remember much about her father if I passed before the three years went by. As these thoughts were racing through my mind, I heard a loud thumping sound. I turned my head and saw the second hand on the wall clock ticking away.

The doctor said the only possible cure was a bone marrow transplant. Being an African American, my chances were slim; if my sister did not match me it would be extremely hard to find a match because there were very few African Americans on the marrow registry. A sibling is the best chance to find a bone marrow match, and if a family member did not match, then a searching patient has to look on the national registry for someone of the same ethnicity as the next best chance of matching. That is what I had to do.Mel Mann and his daughter celebrate her graduation

The previous year, only eight African Americans out of 2,000 patients in need of a bone marrow donor actually found one. I started doing marrow drives with organizations such as Be The Match and the military’s Bill Young Marrow Donor Program. I did marrow drives at churches, malls, colleges and military bases across the country.

In December of 1995, I moved to Atlanta, Georgia and continued conducting marrow drives. In April of 1996, I went to a marrow drive in Columbus, Georgia. A well-known local businessman came to the event looking for me. He said he had hairy cell leukemia, and had been near death, but he tried an experimental treatment at the MD Anderson Cancer Center in Houston, Texas and the treatment turned his leukemia around. He said the marrow drives were great, but I needed to go to MD Anderson ASAP, as “one cancerous cell becomes two, two becomes four, and so on.” He then gave me the contact information for his doctor.

I flew out to MD Anderson and met the doctor. I discovered that this doctor had been the first doctor to treat CML patients with Interferon, which was the first-line treatment at the time. He looked at my medical records, and said, “We still have time. I’m going to increase your interferon dosage and put you on clinical trial after clinical trial.”

In 1998, after three years, all of the experimental drugs had stopped working. I became frail and fatigued; I would wake up in the morning so tired that it felt like I never went to sleep. In addition, despite participating in numerous marrow drives for three years, I was unable to find a bone marrow donor.

Celebrating Survivors DayThe World’s Longest Living Gleevec Survivor

Desperate to survive, I asked my doctor in Houston if there were any more drugs that could save me. He said there was a drug called STI-571 that was close, but they were still having roadblocks with it during lab testing. He said if it was approved I would be the second person to take it. I flew back to Atlanta.

In the summer of 1998, STI-571 was approved for a phase I clinical trial. I flew back to Houston to take part in the trial. Unlike the first patient on the trial, I responded very well. Nine months after entering the trial, I was able to run a 26.2 mile marathon in Alaska. Five months after that I cycled 111 miles in Tucson, Arizona. For these events, I raised funds for future leukemia research.

Three years after starting the clinical trial, in April of 2001, imatinib was approved by the FDA as Gleevec. Of the 350,000 lives that Gleevec has saved, I am the world’s longest-living Gleevec survivor. I was able to see my five-year-old daughter grow up, go to Harvard’s Emory Medical School and become a medical doctor. I celebrated my 63rd birthday in April and my 36th wedding anniversary this November. I thought a cure could only come from a bone marrow transplant. Instead, my cure came from a drug that was only a gleam in a researcher’s eye at the time of my diagnosis.

By Mel Mann

 

Transcript | CML Patient Story: From Terminal Cancer to 26-Year Survivor

Mel Mann: People, they run around, and they stay so busy, and they forget just about the simple things in life and what's really important. When I was diagnosed, I was a Major in the Army and I was concerned about the next promotion, and the next promotion would be Lieutenant Colonel. But when I was diagnosed all of that became nil. What I wanted was more time with my five-year-old daughter and more time with my wife and more time with my family and friends.

How Were You Diagnosed with Chronic Myelogenous Leukemia (CML)?

One morning I was going to work, and I had taken some tests before Christmas. I took the test back in December of '94. After the holidays, I remember I had to go back in and get the results and I stopped by the Air Force base clinic, and the doctor got the results from the MRI that I took for back pain and fatigue, which I didn't think was very serious, or going to be a serious prognosis or diagnosis.

I just thought maybe it was going to be, "Hey, you strained something." But what the doctor said was, "Hey, you've got a herniated disc and your marrow looks really, really strange and it's not the normal marrow of a 37-year-old man." The doctor took some more blood tests and said, "Hey, I believe you have leukemia."

What Were Your Treatment Options?

When I was first diagnosed, I was told I had three years to live and I was told what the options were, and this was 25 and a half years ago. The options then was a bone marrow transplant, which was a possible cure or a longer and better outcome, and the other option was interferon – to take interferon, which is daily injections in my stomach or my leg. And I had to keep that interferon refrigerated, and when I traveled, I had to find a hotel or wherever to refrigerate it.

The other option was doing nothing, but that was a no-go. One thing I wish I would have known was there was one more option and that option was a clinical trial or trying experimental drugs. I did not find out about clinical trials until 18 months into my three-year prognosis. So, if I had found out earlier perhaps, I would have started with clinical trials earlier.

I would say that cancer was a gift to me, because when I was diagnosed, time slowed down, and I started to value time. A week was like a month, or longer than before. I was in the now. I became more mindful of things.

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