What is most likely ahead for Robin Roberts and her big sister Sally-Ann Roberts? And what exactly is MDS?Local doctors who are specialists in treating this condition gave some answers Monday.
If left untreated, MDS or pre-leukemia can cause serious health problems.
"Unfortunately, it doesn't get much better. There are treatments for it that can control it and help to normalize it in some cases. But many times it just progresses and has many of the same problems (as leukemia,) anemia, recurrent infections, bleeding tendency, patients often need transfusions, and they can have many, many of the problems, but played out over a longer period of time, and in most cases, it will be fatal anywhere from one to eight or 10 years," explained Dr. Robert Veith an LSUHSC Hematologist and Oncologist at East Jefferson General Hospital.
Robin Roberts had breast cancer in 2007 and a certain type of chemotherapy involving two standard drugs for breast cancer, raises the risk for MDS.
"If a woman gets certain forms of chemotherapy the risk of developing leukemia is about double than would otherwise be," said Veith. "Developing leukemia is relatively uncommon anyway. It's about one in 30,000 per year. So if you double your risk, it's about one in 15,000 per year of developing leukemia or related diseases," said Dr. Veith.
Most likely, Sally-Ann will get some injections to stimulate her blood to make more stem cells. Then she'll give a blood donation from a vein. Robin will have chemotherapy to kill her sick bone marrow. Then Sally-Ann's stem cells will be infused into Robin through a vein. Robin's blood and blood type will become Sally-Ann's.
"So it will be her sister's blood cells, but obviously it doesn't actually affect anything but the actual bone marrow," said Dr. Julie Kanter, a Pediatric Hematologist and Oncologist at Tulane.
Each of us only has a 25 percent chance of matching the tissue type of each full sibling. That is why people turn to the bone marrow registry for an unrelated donor. For Caucasians, there's a very good chance of finding one. But in all minority populations, donors are scarce.
"Especially if you're a Caucasian from the United States, you have a very good chance of finding a match in the unrelated donor population. However, if you're an African-American, your chance is much lower. Your chance is less than 25 percent, so we continue to urge everybody, but especially our minority populations, to please, please, please get on our bone marrow list," said Dr. Kanter explaining that Hispanics and Asians are equally lacking when it comes to registering to be a donor.
Six thousand people search www.marrow.org daily for a match. Sally-Ann is elated that she was a perfect match for her sister.
"A perfect match. And when I got that news, it was like Christmas times 1,000 because anyone who knows what it's like to wait for that kind of news realizes the trauma. I went online today to marrow.org. Marrow.org is a website about the bone marrow registry and they say 6,000 people a day search that registry, search for a match, and if Robin had not found a match with her family, she would have been one of those 6,000 people," said Sally-Ann, who is the Eyewitness Morning News co-anchor.
She said her sister went public with her breast cancer years ago and saw how it helped others. Now she is doing the same with MDS.
"This time around, she is hoping that she can draw attention to the national bone marrow registry. There are people out there right now who are searching desperately for a match and they can't find one and that is why we need to get the word out. It's very simple to be part of the registry. I just had a swab, a cheek swab and they test that," continued Sally-Ann.
The two drugs that are used in chemotherapy for certain breast cancers work very well in patients who are at high risk for recurrence. And the risk of getting this pre-leukemia from it, is uncommon. So patients and doctors should discuss and weigh benefits verses the risks.
The oral chemo drugs do not raise the risk.