Melvin Mann, Chronic Myelogenous Leukemia (CML) Patient Advocate

“CML (chronic myelogenous leukemia) is supposed to be a disease that strikes people in their sixties, and I was in my thirties,”
recalls Melvin Mann. A family man and Army major, Melvin was stunned to learn he had CML at the age of 37.

His symptoms had started out as back pain and fatigue, which he had been treating with medication and physical therapy, to no avail. In a visit with his physician at a local military clinic, an MRI was ordered requiring Melvin to drive several hours to another military base that had the MRI equipment. It would be a month before Melvin learned the results of the full-body scan.

It was January of 1995. Melvin received the diagnosis of CML, which was confirmed by a second opinion he sought.

Melvin was advised by his doctor that without a successful bone marrow transplant, his life expectancy was about three years.

The best bone marrow matches are with a patient’s relatives, but if they are not a match, a donor must be of the same ethnicity. No relatives matched, nor did any registered donors. At that time, there were a limited number of African Americans on the bone marrow donor registry. Melvin began the treatment prescribed by his physician which were daily injections of interferon.

Melvin thought about his wife, Cecelia, and his daughter, Patrice, who was just five years old, and decided to take action in the search for a donor. Working with marrow donor organizations, and the Department of Defense (DOD) Marrow Foundation, marrow drives were launched within the military. Melvin participated in these outreach efforts, which scaled to include college campuses, malls and churches, radio and television interviews, as well as military bases. His experience as an Army recruiter and public relations officer and degree in public relations propelled him to forge ahead, even when he didn’t find a match. Melvin medically retired from the Army in 1995 and continued his outreach efforts with bone marrow drives, as his health would allow.

At a marrow drive organized by his aunt in April of 1996, Melvin had a life-changing meeting with a local businessman who had seen Melvin’s TV promotions for the event. This individual had been gravely ill with hairy cell leukemia and had been treated at MD Anderson Cancer Center in Houston, Texas, with excellent results. He urged Melvin to contact them.

Thus began Melvin’s experience with clinical trial participation. It had been 16 months since his diagnosis of CML, and none of the medical professionals involved in his care had broached the topic of clinical trials. The bone marrow drives he was involved with were finding donors for many patients, but not for him.

Melvin decided that participating in a clinical trial was his next step towards fighting the illness.

Over the next two years, Melvin traveled between his home in Atlanta and Houston, trying different combinations of vetted and clinical trial medications through MD Anderson. (At the outset of the Imatinib clinical trial, he had to stay in Houston for three months). Over time, the interferon and other clinical trial medications stopped working. A lifelong competitive runner, his body weakened and he suffered intense fatigue. He was, however, eight months past his original prognosis of surviving three years, when he had the opportunity to participate in an Imatinib clinical trial. The Phase I trial tested for the drug’s safety in humans, dosage level and evidence of efficacy.

The Imatinib clinical trial had three locations: MD Anderson, Oregon Healthy & Science University in Portland and UCLA Medical Center in California. Melvin’s medical care continued to be seated in Houston.

“It was for quality of life – not a cure. I was hoping for a better outcome,” Melvin explained. He also thought about how his participation would help other cancer patients.

The process was rigorous. In the first week, Melvin had blood drawn up to 10 times per day. He was required to keep a detailed record of side effects, the time he took the medication, his energy level, diet and other daily details. He experienced severe nausea and was prescribed medication to alleviate it. Melvin’s effort, perseverance and grit paid off.

The drug was a game-changer for him. In June of 1999, nine months after starting the clinical trial, Melvin participated in fundraising events for the Leukemia & Lymphoma Society by running a marathon in Alaska and a few months after that, cycling 111 miles in Tucson, Arizona.

Melvin has been taking Imatinib ever since. The medication was approved for use in CML in May 2001 by the United States FDA (Food and Drug Administration). Melvin participated in another clinical trial to see if he could come off the medication, but he could not. Over the past 26 years, Melvin has participated in three clinical trials for different combinations of medications.

“Trials have changed over the years,” said Melvin. “The last (Imatinib) trial I was in was in 2017. I had to travel every three months to the trial site, although some testing was done at home. The COVID-19 pandemic has increased that whatever you can do at home or with a local doctor, in terms of aspirations and blood draws.”

For some patients, particularly members of the Black and African American communities, the specter of the unethical Tuskegee Syphilis Study still influences opinions about the safety of clinical research, despite vast advances in oversight and regulation made in subsequent years by the United States government to ensure the safe and ethical treatment of all patients. It is important that patients are asked if they would like to participate in a clinical trial.

Melvin advises patients and the public that “It’s vital to know that clinical trials are an option.

“There can be benefits from a clinical trial. You are getting more attention because the studies often require you to be watched more and seen by staff more frequently. In oncology clinical trials, you’re not getting a placebo, you’re at least getting the standard of care treatment. It’s important to weigh your options. Can you get the support you need from family or a caregiver? Ask questions of the study staff. There are risks involved, so ask about them. You have the choice to stop being in a clinical trial, whenever you decide.”

Mel is now the world’s longest living Imatinib and tyrosine kinase inhibitor CML survivor.

Mel had a MBA, but in 2000 he decided to change his career focus. He returned to higher education and earned an BA in English Literature, M. Ed. In Secondary English and a teaching license, all within the span of three and a half years. He and Cecelia continue to volunteer for various cancer and bone marrow donation organizations. Mel continues to participate in marathon and half-marathon events, and sometimes 10Ks with his wife and daughter, Dr. Patrice Mann, a psychiatry specialist, graduate of Harvard College and Emory Medical School.

“I recommend clinical trials, at least to ask about them. It’s also important for doctors to ask patients if they want to participate in clinical research,” said Mel.