Mel was diagnosed with chronic myeloid leukemia in January 1995 and given three years to live. The only possible hope for survival was a bone marrow transplant. Despite numerous marrow drives and adding thousands of people to the marrow registry, he never found a donor. Three years after diagnosis, he entered the phase 1 clinical trial of Gleevec (imatinib) at the University of Texas MD Anderson Cancer Center. Over twenty years later, he is their longest living Gleevec patient.

Mel Mann, MBA, M.Ed.

Twenty-three years ago, I was diagnosed with chronic myeloid leukemia and given three years to live. I was a 37-year-old Army major with a wife and 5-year-old daughter who I wanted to see grow up. The only possible cure for my leukemia was a bone marrow transplant. Despite conducting numerous marrow drives and adding thousands of donors to the marrow registry, I never found a donor.

I took part in several clinical trials, and at the three-year mark, I entered phase 1 of the clinical trial of the drug Gleevec (imatinib). That drug saved my life, and I am the world's longest living Gleevec patient, according to the Leukemia and Lymphoma Society. The Leukemia and Lymphoma Society (LLS) helped fund Gleevec research. I have lived to see my daughter graduate from high school, Harvard University, Emory Medical School and become a physician. After beginning Gleevec, I also experienced the awesome satisfaction of running several marathons and completing a 111-mile bike ride for the LLS Team In Training program. In addition, I have been an LLS community outreach volunteer and trained other volunteers nationally.

As an African American, I am blessed to have been a patient pioneer in the historical Gleevec clinical trial. However, research has shown that African Americans are 

 to clinical trials. Further, studies have showed that African Americans are also less likely to receive the newest state-of-the-art treatments.

In myeloma, the disparities in treatment are especially apparent. Myeloma is a cancer of the blood in which African Americans are diagnosed at twice the rate as whites. Yet Africans Americans are significantly 

less likely to receive the newest treatments

 such as the one that I received. In fact, they will most often experience treatment delays, including delays in stem cell or bone marrow transplants often needed in treating myeloma (myeloma should not be confused with melanoma, a skin cancer). African Americans are often unaware of the symptoms of myeloma, which are bone pain and/or fractures, feeling tired and weak, getting sick more often than usual due to a weakened immune system, numbness or tingling in the arms or legs, increased thirst and urination, constipation, abnormal bleeding, chest pain, headaches, shortness of breath and decreased alertness. These symptoms do not mean you have myeloma, but you should talk with your doctor about these signs and symptoms.

Any of the following factors increase the risks of developing myeloma. They include: race being over 50 years old, sex (males are diagnosed more than females), being obese or having a history of a condition known as monoclonal gammopathy of undetermined significance (MGUS).

The Leukemia and Lymphoma Society has created a program called Myeloma Link, which connects African American communities to information, expert care, and support which improves the quality of life among African Americans with myeloma. It is my great privilege to be a part of Myeloma Link, which partners with churches, senior centers, community health centers and other trusted partners within the African American community. Myeloma Link raises awareness among African Americans about myeloma, provides free resources and financial aid, such as help with travel pay, co-pay and insurance premiums, and provides African American myeloma patients with the knowledge and tools to seek novel, state-of-the-art treatments, including clinical trials, in a timely manner. Myeloma Link is an LLS initiative in eight cities across the United States. It started as a pilot program in Atlanta, and Washington DC, in March 2017, and has expanded to St. Louis, MO; Houston; Baltimore; Detroit; Oakland, CA; and Philadelphia. In the future, LLS would like Myeloma Link to be a national program. Myeloma Link trains local community outreach volunteers to plan education programs in churches, senior centers, and community health centers; presents Myeloma Sundays, where health care providers give a brief Myeloma Link ministry moment during church announcements in traditionally African American churches; connects patients with master's level oncology professionals at LLS who provide personalized one-on-one answers to questions about disease, treatment and additional support; connects early diagnosed myeloma patients with trained volunteer survivors and caregivers who have shared the same myeloma experience; and connects patients and caregivers to LLS myeloma support groups.

Myeloma Link also encourages patients and caregivers to take advantage of the various free educational resources and programs, including: myeloma booklets, online chats, educational workshops, webcasts, conferences, and teleconferences. Myeloma Link has been very well received, thus generating the necessity for national expansion. Many patients, caregivers, churches, senior centers, and health centers frequently request our free services. I have seen church congregations, senior center members, and health fair participants become aware of myeloma symptoms and risk factors; received the gratitude of patients and family members as they find out early in their diagnosis how to effectively navigate the treatment landscape and cope with their disease; and I have seen respected health care providers selflessly donate their time and talent presenting critical information, with an attitude of social responsibility to this lifesaving cause, which benefits the greater community.

If you are interested in becoming involved with or finding out more about Myeloma Link, please contact MyelomaLink@LLS.org, 1-844-955-LINK or www.LLS.org/MyelomaLink. Myeloma Link encourages the involvement of churches, senior centers, health centers and African American organizations. Further, if you would like to volunteer any skills, talents, energy, or have a desire to help in this lifesaving effort, please feel free to contact Myeloma Link.

Articles

Myeloma Link: Empowering African Americans

In January 1995, on a wintry Michigan morning, I swung by an Air Force clinic on my way to work to pick up some test results taken before the Christmas holidays to pinpoint the root of my back pain. The doctor’s urging to come have a seat on the couch in his office as well as his solemn facial expression made me feel a bit uneasy.

The doctor proceeded to tell me a herniated disk caused the back pain. The tests also revealed that I had chronic myeloid leukemia (CML) and that CML patients had a three-year life expectancy, unless they had a bone marrow transplant. He furthered explained, that with a bone marrow transplant, I had a 50/50 chance of a cure, but my body could reject the donor’s marrow and I could die from the procedure. I asked him why he didn’t call me to come in earlier.

“I didn’t want to spoil your holidays,” he responded. At this point, I felt like I was underwater, sinking further down into the couch, as I listened to the doctor’s voice, which floated towards me in sluggish and muffled waves. Coincidentally, I heard a thumping noise drumming in the background. I glanced to the side, realized the thumping was the second hand ticking on the wall clock. My world had changed in a matter of seconds.

Thoughts of my five-year-old daughter raced through my mind. After counting and re-counting, I concluded that in three years, she would only be eight years old. She still had one training wheel on her little pink bike that she got for Christmas and my wife and I were teaching her how to ride it. Blindsided by this diagnosis, a 37-year-old Army major at the time, I wondered if I would make it to my 40th birthday.

As I left the doctor’s office, somehow I did not feel the back pain anymore. Cars were still going up and down the street as usual, and there I stood like a deer caught in the headlights of an incurable diagnosis. I felt like I had a losing lottery ticket, but I needed to recheck the numbers because my luck couldn’t be this bad. I agonized over how I was going to break this news to my wife and my mother.

Unwilling to accept the diagnosis, I asked the Army to fly me to the Walter Reed Medical Center, in Bethesda, Maryland, for a second opinion. In my state of denial, I was seeking someone to dispute this diagnosis; unfortunately, Walter Reed confirmed the diagnosis. I then started CML treatment — daily injections of interferon until I could find a marrow match.

Things continued to spiral downward. My first disappointment came when no marrow matches were found among my relatives. Further, no one on the national marrow registry matched me. Even more disheartening was the fact that marrow matches come from someone within the same ethnic group and very few minorities were on the registry.

I contacted the American Red Cross to tell them I wanted to start doing marrow drives. The Red Cross sent me a letter stating that no one had ever found their own unrelated marrow donor and suggested I should spend my time adjusting to the medical treatments, but if I wanted to proceed, they would be happy to work with me. While in Bethesda, I stopped by the Department of Defense (DOD) Marrow Foundation, to enlist their aid in setting up marrow drives within the military. Although I would have preferred to fight this battle quietly with conventional chemotherapy and radiation, I sensed that my situation meant I was being called into the marrow recruitment arena as a spokesperson and educator.

For the marrow drives, I lent my face and my time to these marrow organizations. They, along with my friends and family started hosting marrow drives. At the first drive, which my co-workers organized, 350 people, including the doctor who first diagnosed me, gave blood samples. We did drives basically everywhere — college campuses, military bases, malls and churches, among other places. My daughter, at one of the drives, exclaimed, “Daddy, I can’t see why you can’t find a match. All the blood looks the same to me.”

While very few in the community had heard about bone marrow transplants, they really gave me overwhelming support. I would look out the window and see a neighbor’s teenage son cutting my grass, people would bring us home-cooked meals, a local chiropractor told me to come in as often as I wanted to fix my back and I also had friends who did marrow drives for me in places like Hawaii, Germany, and even the Pentagon. By 1996, I had medically retired from the Army, moved to Atlanta, and was still involved with marrow recruitment, as my health allowed. The Red Cross recruiter would come by the house and pick me up early in the morning. We would do radio and television interviews or we would drive for hours to meet with a company to set up a drive or educate some fraternity late into the evening about marrow donation. In addition, the DOD would fly me to different bases to help recruit donors and tell my story.

That year, I went to a marrow drive that my aunt had organized, about two hours away, in Columbus, Georgia. Upon arriving, I heard that a local well-known businessman, a stranger to me, had come in earlier and was looking for me but had to leave. About an hour later, he came back and had this intense look in his eyes. We grabbed a table off to the side. He told me he had seen the TV promotions I did for the drive. He proceeded to tell me his story of having hairy cell leukemia and being near death, but the doctors at the MD Anderson Cancer Center turned the leukemia around.

Although praising the life-saving efforts of the marrow drives, he added, “But YOU need to get to MD Anderson ASAP.”

As he left, he stressed “one cancerous cell becomes two, two becomes four, four becomes eight, and so forth.”

He then handed me a card with the contact information for MD Anderson. I called the number and, miraculously and almost simultaneously, my future nurse and doctor answered the phone; something that never happened again in my twenty years as a patient. After our conversation, it was decided that I should definitely go to MD Anderson. A few days later, I was on my way to Houston, Texas, on a corporate jet, courtesy of the Corporate Angels. When I met my doctor at MD Anderson, I discovered he was the first doctor to use interferon for CML, which was the first-line therapy at the time. He carefully 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.”

During this time, I also continued my involvement with marrow drives. Although thousands of people were added to the marrow donor list, and donors were being found for others, I could not find my own donor, as was made clear to me three years earlier. The DOD even flew me up to MedStar Georgetown University Hospital in D.C. to be with my best Army pal as he donated marrow. Although he joined the marrow registry in hopes of helping me, he ended up matching and donating to a complete stranger. I was proud of my friend. His compassion was first class and he went up another notch in my book.

As time was ticking down, I became very frail and fatigued. The interferon, as well as other experimental drugs, had stopped working. I would wake up in the morning feeling like I never went to sleep. With hope diminishing, I asked my doctor when a new drug was expected. He said a drug called STI571 was close and that I would be the first patient to try it at MD Anderson. His nurse reminded him that he told someone else the same thing.

Finally, in August 1998, MD Anderson got approval to start clinical trials on STI571. Elated, I traveled back out to Houston and became the second patient at MD Anderson to use STI571. Only twenty patients could participate in phase I of the clinical trial and we had to remain in Houston for nine weeks.

I had amazing results with STI571, so much that in May 1999, I ran the Mayor’s Marathon in Alaska, and completed a 111-mile bike ride in Tucson in November 1999 for the Leukemia and Lymphoma Society’s Team in Training. For these events, I raised a sizable amount of money for future leukemia research. In April 2001, the FDA approved STI571, now known as Gleevec (imatinib). Currently, I am blessed to be the world’s longest living Gleevec patient.

My daughter eventually got the hang of riding that little pink bike and is in her fourth year of medical school, training to be a physician. I would like to thank her, my wife of thirty years, family, friends, countless strangers, church family, the military, my cancer support group and the medical community for the overwhelming support they provided throughout my cancer journey.

They gave me hope — hope for a healing that I thought could only come from a bone marrow transplant. Instead, my healing came from a drug that was only a gleam in some researcher’s eye at the time of my diagnosis.

A survivor shares the story of his experience with chronic myeloid leukemia.

Mel Mann, MBA, M.Ed.

Myeloma Link: Empowering African Americans

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