To save a life, Julia Killen endured six hours with each arm stuck with two needles that drew cells from her bone marrow.
While the process involved some discomfort and inconvenience, Killen says the sacrifice was well worth the benefit to a blood-cancer patient who needed a transplant. The process started with a swab of her cheek and a few questions, all of which led to Killen being listed in the National Marrow Donor Program’s Be the Match registry.
“The person I donated to, if I wasn’t on the registry, she wouldn’t have my cells in her now,” says Killen, a nurse at Mission Health in Asheville. “Knowing the fact that I could save somebody’s life was all it took for me to do that.”
About every three minutes, someone in the United States is diagnosed with blood cancer, and one person dies of the disease nearly every 10 minutes, according to the Leukemia & Lymphoma Society. New cases of leukemia, lymphoma and myeloma account for nearly 10 percent of the estimated 1.7 million cancer cases diagnosed in the U.S. last year.
For many, a cure starts with matching patients to transplant donors like Killen. Mission Health has made expanding the national registry a priority, says Dr. Lindsey Gouker, a pediatric hematologist and oncologist at the hospital’s cancer center. A November drive added 60 new names to the registry, she says.
Getting on the registry takes about 15 minutes, Gouker explains. “The [process is] quick and easy, but the impact is huge. [A bone marrow transplant is], oftentimes, the only thing that is ultimately going to cure these patients and save their lives. The reward is you’re saving somebody who has no other options left, so it’s a wonderful thing.”
Marrow is a spongy substance inside bones that produces red and white blood cells and platelets needed to stay alive and healthy. When blood cancers and certain genetic conditions damage the marrow, these blood-making factories break down. A transplant gives ailing patients an infusion of healthy blood stem cells that help regenerate healthy marrow.
At the November registry drive, Gouker explains, potential donors provided cheek swabs and contact information that Mission submitted to the national registry, which contains the samples of approximately 17 million people from around the world. Donors also can provide samples by requesting a kit from the program website, bethematch.org.
“It is sent to your house, and you can do it yourself, and then send it back in,” Gouker says. “It goes to a central lab where they do all the processing and keep all the information and maintain the registry list. If we’re looking for a donor for somebody that needs a transplant, there’s a way to log into the system and say, ‘I need a person that meets these criteria.’”
The goal is to find a donor whose blood cell markers match those of the prospective recipient, she says.
“Everyone’s composition of markers is different, based on our genetics, who our parents are and what our ethnic background is,” Gouker says. “And there’s lots and lots of different combinations of these markers that we look for.”
For those needing a bone marrow transplant, family members are evaluated first as potential donors. But the chance of finding a complete match from a family member is about one in four, says Dr. Witold Rybka, director of the Bone Marrow Transplant Program at the Penn State Hershey Cancer Institute. The larger the family, the better the odds.
Patients without a family match must turn to the registry. A Caucasian patient seeking a match has about a 85 percent chance of success, Rybka estimates. For other ethnicities, the likelihood drops to 60 percent. That’s because the majority of banked stem cells come from donors in North America and Europe, says Rybka.
“Caucasians are the easiest folks to match because there just happens to be a lot of [them] on the registry,” Gouker says. “We’re trying to expand the donor pool to include folks of different backgrounds — African Americans, Native Americans, those with Latino or Hispanic heritage. We just don’t have those populations well-represented on the donor registry, and that’s because they haven’t been highly targeted groups in the past. We’re trying to get the word out that we need folks that are non-Caucasian.”
Gouker adds that bone marrow transplants also are used to treat blood disorders such as aplastic anemia and sickle cell anemia. Most of Mission’s blood cancer patients can be treated with chemotherapy alone and don’t need a bone marrow transplant, she says.
Those who need the operation are referred to larger cancer centers in North Carolina.
“The bone marrow transplant process is very complicated, very intense,” Gouker says. “It takes about 100 days for the whole process to be done. We [at Mission] help manage those patients and identify those with cancers that are going to require transplant. We can support them and treat them and ultimately help make the decision of whether they need a bone marrow transplant or not. And once that decision is made, then we help facilitate the referral.”
Prepping to give
Killen, 34, says she decided to get on the donor registry because she recognizes the need. “It was an amazing experience,” she says. “I gave a cheek swab, and they called me and said I was a match, which at first I didn’t believe because I’d been on there less than a year.”
That was just the beginning of the donation process. Next, Killen had blood drawn at Mission for “confirmatory typing” to make sure she was the best match for the patient. After her blood type was confirmed, Killen underwent a full physical exam that included X-rays, an EKG and more blood work, followed by a 45-minute interview. Just before the donation, she had hormone injections on five consecutive days to stimulate stem-cell production in her system.
There are two method of donating. One involves a surgical procedure to remove marrow from the hipbone, but Killen chose to have cells removed intravenously.
“I had two IVs in each arm, and they pull out your blood, run it through a machine, … separate your plasma and your bone marrow, and … return your blood back to you,” she says. “You can’t get up, you can’t move, because you have two needles in each arm. You’re stuck in the same position for six hours.”
The process was a bit uncomfortable but not painful, says Killen. “I would do it again,” she says. “I know how important it is. It was an easy process. They pay for everything.”
As for the patient, chemotherapy kills the diseased bone marrow cells prior to the transplant, Gouker explains. Soon afterward, the donor cells are injected, much like a blood transfusion.
“It goes into your arm, and the cells are so smart that they know where to go. Isn’t that amazing? They take hold there and start replicating and making the cells they need to make,” says Killen.
The replication process takes 30 to 45 days after the cells have been injected.
Gouker says Mission plans to hold another bone-marrow registry drive during Childhood Cancer Awareness Month in September.
“We’d like to encourage folks to come down and get on the registry, and we’ll make it easy and painless and free,” she says. “Being on the registry is a way to potentially save someone’s life.”
National Marrow Donor Program:
Be The Match (bethematch.org)