When Melvin (Mel) Mann was diagnosed with cancer 26 years ago, his doctors gave him a three-year prognosis; the average for patients with his type of cancer.
He hoped to live at least eight years and spend some more time with his wife and their then 5-year-old daughter.
Little did he know that he’d go on to run marathons, exceed his doctor’s expectations, and watch his little girl grow up to become a doctor. His incredible journey was possible thanks to clinical trials.
At the time of his diagnosis, Mann was a 37-year-old Army major. He was stationed in Detroit and had been experiencing chronic back pain for more than six months. He also had night sweats. In December 1994, he had an MRI before Christmas but didn’t think anything significant was wrong.
A month later, he got his results. The MRI showed he had a herniated disc and possibly leukemia. Further testing showed he had chronic myelogenous leukemia, a blood and bone marrow disease where the bone marrow makes too many white blood cells.
“I get this unexpected diagnosis that really puts an end date to my life,” he recalled. “I’m just in shock because that’s the first time I ever had to deal with my own mortality.”
The doctors told him his best hope was to get a bone marrow transplant. A sibling is often a potential donor but his sister was not a match, so he started looking for a donor on the national donor registry. He says at the time, the odds of Mann, who’s Black, finding a Black donor match was about 1 percent.
He was undeterred. Over the years, Mann signed up thousands of people to the bone marrow donor registry, including holding drives at the Pentagon in Virginia, and in Pennsylvania, Georgia, and many other places in the United States and around the world. He felt a sense of urgency to register donors to potentially help others.
Mann, who took a medical retirement from the military and moved to Atlanta, says looking for a treatment saved his life. While he never did get a bone marrow match, during one of his donation drives, he met a businessman who survived cancer and had received treatment at MD Anderson Cancer Center in Houston.
He followed the man’s advice and visited MD Anderson. The doctor there told Mann there was still time to help him. He was 18 months into his three-year prognosis.
The doctor adjusted his medicine and enrolled him in clinical trials. Eight months later, in August 1998, he was the second person at the facility to participate in a clinical trial for a drug called STI571, known generically as Imatinib or by the brand name Gleevec. He was one of only 20 people across three locations to try the medicine.
Mann lost a lot of weight, was frail, and slept a lot. He slowly improved as his doses increased. In June 1999, he was able to run a marathon.
At the time he started the clinical trials, Mann didn’t know how long the medicine would last, let alone that he’d still be taking the same medicine today. These days, his cancer is in remission and he gets routine blood work done every three months.
He advises other patients, especially people of color, to consider all their options, including clinical trials.
Now 64, Mann is a proud patient advocate who does outreach work with many organizations, including the Leukemia and Lymphoma Society, and the Be the Match donor registry.
He’s still running and is grateful he got to see his daughter grow up. She’s a psychiatry specialist, who graduated from Harvard College and Emory Medical School.
He’s honored to have been a part of the clinical trial that’s helped so many cancer patients.
“The further I get out, the more I can see people taking Gleevec,” said Mann, who’s the world’s longest living Gleevec patient. “To know that I was part of something like that, the groundbreaking research, feels good.”