Photo Credit: Craig Barritt/Getty Images
The day that Good Morning America host Robin Roberts announced she has rare blood disorder myelodysplastic syndrome (MDS), fans were shocked. It was just five years ago that she beat breast cancer with a combination of chemotherapy and radiation. But that successful treatment just may be the root of her condition. While the exact cause of MDS is still unknown, it does sometimes develop after cancer treatments.
Up to 12,000 Americans are diagnosed with MDS annually; left untreated it can progress to leukemia. A bone marrow transplant offers the best chance of survival, as it does for those with leukemia, lymphoma, sickle cell anemia or inherited immune deficiency disorders. Fortunately Roberts, 51, didn't have to look far for a donor. Her 59-year-old sister Sally-Ann is a match.
How it works
Bone marrow is the soft, spongy tissue inside the bones that produces stem cells, some of which turn into blood, muscle and brain cells, while others remain as they are to help repair tissue and other cells throughout the body. MDS stimulates stem cells to produce immature red blood cells (blasts) that die in the bone marrow, leaving little room for healthy cells to form. A bone marrow transplant clears out the damaged cells to make way for healthy ones. More than 75 percent of the time, a donor’s blood is used, not the actual marrow.
For five days prior to giving blood for a bone marrow transplant, donors receive daily injections of filgrastim, a drug to move healthy stem cells from the marrow into the bloodstream. “Blood is drawn from a vein in the donor’s arm and passed through a machine that collects the needed transplant cells. The remaining blood is then returned to the donor through the other arm,” explains Willis Navarro, M.D., medical director of transplant services for the National Marrow Donor Program.
Recipients undergo chemotherapy (and sometimes radiation) to destroy their damaged cells several days before receiving a bone marrow transplant and make room for healthy ones. The donor cells, which have been collected from blood or marrow, are then infused via intravenous line (IV) into a vein in the recipient’s chest, much like a blood transfusion. Much less frequently, marrow is harvested directly from pelvic bone while the donor is under anesthesia, and then given to the recipient via IV. “These donors may experience lower back pain, fatigue or stiffness for a few days afterwards,” says Navarro.
Over time, these cells should grow and make new, healthy blood cells, a process called engrafting.
The need for donors
As with any transplant, there’s less of a chance that a recipient will experience complications when the donor is a close relative. (This risk is double if the donor is not a relative since the tissue types aren't as well matched). But that’s not the case for most patients -- 70 percent of those in need of a bone marrow transplant must go outside of their families to find a match through programs like Be the Match, a free international donor registry operated by the National Marrow Donor Program. Anyone between the ages of 18 and 60 can donate; however, those younger than age 44 are called on the most often because they produce more high-quality blood cells.
Since Roberts is an African-American woman, having a familial match is a blessing. Only 7 percent of Be the Match’s 10 million registered donors are African-American. “You’re most likely to find a match within your own racial or ethnic heritage because tissue types are inherited,” says Navarro. Currently, the chances of a Caucasian finding an unrelated match are 93 percent -- 20 to 30 percent higher than that of an African-American or Asian patient. There’s also a high need for Latino and Native American donors.
Registering to be a donor is quick and easy. All you have to do is swipe the inside of your cheeks with a cotton swab -- that's enough to match patients with donors. After you complete an online form at Be the Match or other registry, you’ll receive a kit in the mail with instructions on how to swab your cheek, then return the swabs in a pre-paid envelope. Few registered donors are actually called on to help, but if you are, you can resume normal activities within a week after donating. "Many people don't realize they can be bone marrow donors," Roberts wrote on her blog. "I encourage everyone to sign up on a donor registry."
Life after a transplant
Recipients like Roberts will spend five to six weeks in the hospital after a bone marrow transplant. Because their weakened immune systems are prone to infection and pneumonia -- especially during the first 100 days, -- recipients will continue outpatient care for a few months. Until the new cells engraft (typically within 60 days), Roberts will undergo weekly transfusions of red blood cells and platelets, as well as injections of a drug to help transplanted cells to implant faster. As is common with most patients, she has a 30 to 40 percent chance of developing graft-versus-host disease, a complication in which donated cells attack the recipient’s body. Once transplant recipients are discharged and under outpatient care, they'll like be encouraged to get plenty of rest, do some light exercise such as walking, and protect themselves from germs with a clean living space and to wear protective gloves and face masks when out in public. Assuming all goes well, viewers of Good Morning America should see Roberts back on the air sometime next year stronger than ever. "I am going to beat this," she declared in her announcement." My doctors say it and my faith says it. It's about focusing on the fight and not the fright."