Health

Blood disorders

Medical world still trying to figure out MDS

 

Special to the Miami Herald

“He said if it helps anyone learn about stem cell transplant, then he’s all for it,” said his wife Mary Joyce, who sat at the edge of her husband’s hospital bed during the process.

Feinstein, who oversaw the transplant, said Joyce’s earlier chemotherapy treatments for lymphoma left his bone marrow decimated of healthy cells — much like what can happen to other cancer patients under intense chemo. But because Joyce had not developed MDS, his own previously harvested healthy blood was used for transplant.

MDS patients are the least likely candidates for stem cell transplants because MDS usually occurs in elderly people, 70 years or older, who are too infirm to withstand the rigors of a bone marrow transplant. Further, though some patients with blood cancers can use their own pre-chemo blood to replenish damaged stem cells, MDS patients require family or unrelated donors.

And therein lies another problem, according to the The National Marrow Donor Program. Only 25 percent of people who need bone marrow transplants are compatible with family members - the rest depend on the national registry to find matches with people of similar heritage.

Although 9.5 million people are registered to be donors through the program’s Be the Match campaign, the majority are Caucasian. While 90 percent of white patients are able to find matches, only 60 percent of minority patients are matched.

Since the morning Roberts went public with her disease through July 5, 17,500 people have signed up to become donors. Typically, about 9,000 sign up per month.

Roberts, 51, will receive a bone marrow transplant from her sister, an uncommon perfect sibling match.

Meanwhile, MDS, which is frequently described as “rare,” is not so rare. About 17,000 Americans a year will contract the disease. U.S. Marine Sgt. Ken Reich, 26, of Miami Springs was diagnosed in May 2011 while stationed in Okinawa, Japan. He also had served in Iraq.

“My master sergeant tried to make me feel better about having MDS by telling me only 20 percent of people die of the disease. Then he said that means one of every five people die. I guess I’m lucky so far,” Reich said during a recent treatment at Sylvester Comprehensive Cancer Center at University of Miami Hospital.

Like Roberts, Reich has age, stamina and determination in his corner.

With a bone marrow transplant already under his belt, Reich is now undergoing the only photopheresis therapy available for MDS in South Florida, at Sylvester. The therapy runs his new blood through a photosensitive compound and UV light to stimulate his new blood cells against rejection.

Reich was among the first patients treated at the Sylvester transplant inpatient unit when it opened in September. The center is the only one in South Florida to perform bone marrow stem cell transplants for MDS patients.

“This is worse than war. In Iraq any one of my friends would jump on a grenade for me. Here, I have support but it’s me against the disease,” Reich said.

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