When Dezmon Cole, 42, went for her annual physical in October of 2012, she wasn’t expecting the call that changed her life.
“My doctor called and asked me how I was feeling, because my blood work showed that something was seriously wrong,” says Cole, recounting her doctor asking her about feeling tired. She was, but associated it with being a busy working mom with two girls.
“The doctor said that looking at my low blood counts, she didn’t know how I was making it at all.” A few days later, she was diagnosed with leukemia.
Cole is one of nearly 100,000 individuals who are diagnosed with a life-threatening disorder of the blood or lymph nodes as the primary site, unlike cancers that spread to the blood or lymph nodes.
New stem cell transplants are offering promise, hope and prolonged life.
“Good Morning America” anchor Robin Roberts, who recently returned to the show after several months’ absence, was diagnosed with myelodysplastic syndrome-a disorder where bone marrow produces too few functioning red blood cells, white blood cells and platelets-and got a transplant with bone marrow from her sister last fall.
While stem cell transplants are beginning to show hope for diseases like sickle cell disease, heart disease and muscular dystrophy, Dr. Daniel Couriel, director of the Bone Marrow Transplantation Program at University of Michigan in Ann Arbor, says changes and improvements in transplantation for blood cancers and disorders in the past 20 years have really given significant help and hope to thousands of people who had a poor prognosis after diagnosis.
In stem cell treatment, patients receive high doses of chemotherapy and radiation before the stem cell transplant. It is only after the chemo has cleared the blood that the transplant is done. Cole recently underwent her first round of chemotherapy and will continue treatments until her transplant.
For blood disorders, such as the many types of leukemia and Hodgkin’s and non-Hodgkin’s lymphoma, stem cells are an option after chemo and sometimes radiation.
“Surprising to most people, the transplant is done through a regular transfusion. The cells know how to home themselves in the bone to begin making healthy cells, platelets and blood in about 10 to 14 days,” Couriel says. In about 30 to 40 days, the patient really starts to feel better and can resume most activities in about six months.
Stem cells are part of the first course of therapy for people diagnosed with multiple myeloma. African Americans have an incidence of multiple myeloma at a rate that is twice as high as that for Caucasians, Couriel says. “This is significant because they are also 50 percent less likely to actually have a stem cell transplant than their White counterparts,” Couriel says. “I am not sure why there is this disparity in terms of actual transplantations. It could be access or it could be cost.”
But he adds that in terms of outcomes, Blacks do as well as Whites.
While stem cells can be a cure for people with leukemia or lymphoma, the transplants are not a cure for multiple myeloma patients.
"You don’t see a cure, but you raise the chance for a complete remission."
Dezmon Cole couldn’t use her own cells for transplant and had no siblings who were a match. So she is on the National Bone Marrow Registry, in search of a donor match.
There are two ways that the stem cells are harvested. One is through one’s own bone marrow or cells, called autologous transplantation. The second major option for adults is allogenic transplantation-from a matching sibling or donor’s cells. Up to 50 percent of stem cell transplants are allogenic. Couriel says, “There is far less toxicity if a patient’s own bone marrow can be used to harvest the stem cells and far fewer complications.”
Couriel says that there’s been an explosion of treatments, including stem cell transplantation, that has prolonged the lives of people living with blood disorders. “With the new drugs and transplants, we are seeing patients are now having healthy survivals that are nine to 10 years out.”
Because of the improved outcomes, more and more stem cell transplants are being done in southeast Michigan, at University of Michigan, the Barbara Ann Karmanos Cancer Center in Detroit and other multidisciplinary treatment centers.
Although the procedure has become safer and is providing an improved quality of life to so many, stem cell transplants do not come without risks or complications.
Personal cells best
“When you are using the patient’s own cells, you are transplanting cells into their own immune system. With a donor, there is always the chance of graft vs. host disease, where the body rejects the transplanted donor cells, “Couriel says. “Fortunately, much of that can be treated with medications and other therapies. A patient can also undergo complications such as low white cell or platelet counts, which are easily treated.
Dr. Joseph Uberti, division chief of hematology and co-director of bone marrow transplants at Karmanos, says physicians have conducted 300 stem cell transplants for cancers of the blood or lymph nodes in 2012, up from 100 in 2004. He attributes the rise to more sophisticated procedures and safety. Uberti says using a person’s own cells is always preferable when possible.
“About 50 percent of the harvesting we do uses a person’s own cells for transplants, but the rest come from siblings or non-related donors through the registry.”
Some 25 percent of donor matches come from siblings. That’s why the national registry is so important in finding other donors.
And about 70 percent of patients in need of a transplant do not have a matching donor in their family. Couriel and Uberti agree race and ethnicity are paramount in finding the best stem cell matches.
Finding a match
The key to ensuring that African Americans who need stem cell transplants get them is increasing the numbers of African Americans who are willing to join the National Marrow Registry through its Be the Match initiative. There is a shortage of African American registry members, which also means that it is more difficult for those needing a stem cell transplant.
Barbara Rozier knows the importance of finding more Blacks to join. She’s worked with Be the Match for 15 years, now as the supervisor of recruitment and community development in North Central District, based in Detroit. But for her, it’s personal. In 1998, her daughter needed a stem cell transplant.
“She underwent four years of radiation and four years of chemotherapy to stay alive while we waited for a match, so she could have a transplant,” Rozier says. Back then, there were a lot fewer donors of color. “Out of the 6 million donors who were on the registry at that time, they found a gentleman in Florida who was a match and willing to donate. He was the only match out of the whole registry.
“At Be the Match, we do 20 bone marrow drives a month in the city,” Rozier adds. With a small staff, the outreach is made possible through partnerships with churches, civic groups, individuals and the UAW. “African Americans just need to be made aware of the need for donors,” she says.
The process of getting screened is painless. Where once, initial screening happened with a blood draw, it is now as easy as filling out a form and doing a cheek swab at a donor drive. The swab is sent to a lab and the tissue type is entered into the registry.
Rozier says the numbers over the years have remained steady, but the news about Robin Roberts did cause a bump in people becoming potential donors.
Barbara Howard stepped up to become a part of the national registry while attending a women’s expo event in downtown Detroit back in 1995.
“There was a table and, back then, they did take blood to get you in the registry. So I did.” But Howard says joining the registry doesn’t mean that you will get called right away. “Every year, you expect a call, but for me, the call didn’t come until 2000-a whole five years later,” Howard says.
“But when you get the call to tell you that you are a match with someone and you could be saving a life, is overwhelming.” She says she would tear up every time she thought about it.
Howard went through a series of tests to make sure she was healthy enough to donate. Her marrow was harvested in a minor surgical procedure at University of Michigan and rushed on flight to St. Louis for a stem cell transplant for a man with acute leukemia. Because of her donation, the young man has gone on to get married and have a full life, she says.
“For me, it was pretty painless. They gave me a mild anesthesia, got the marrow from my pelvic bone-and sent me home,” Howard says. “I went home the same day and went to sleep, but I was walking around the next day. There was really no down time.” And as for the marrow and cells she donated, she says, “you just regenerate it.”
Howard has no regrets about being a donor. “It was a positive experience and, if they called me again, I would do it again,” she says. “For whatever minor discomfort you might feel, I would say think about the recipient. Or think about what a gift it would be for you, or someone you love, if they needed it.”
Dezmon Cole has not yet found the donor match she needs to proceed with her stem cell transplant. But she isn’t just sitting around waiting for a donor to appear.
“I decided that this year, for my birthday in February, I (would give) myself a donor match,” Cole says. She recently threw a party/donor drive at Mayflower Lanes Bowling Center in Redford to not only find a donor for herself, but hopefully for others.
If you are interested in potentially saving a life by being a donor, or hosting a donor drive, contact the Detroit Be the Match offices at 313-833-2624 or BetheMatch.org.