Myelodysplastic Syndromes: The Cost of a Cancer Cure

June 12, 2012— -- Jenna Langer was a high school senior when she was diagnosed with osteosarcoma, the most common form of bone cancer in children and teens.

"Of course, I had a really uncommon situation where the cancer was in the middle of my head," said Langer, who lives in Chicago.

The tumor was buried deep in Langer's sinuses, forcing doctors to attack it with intense radiation and chemotherapy instead of surgery.

"Unfortunately, I've had some long term side effects from the treatment that saved my life," Langer said.

At 24, Langer was diagnosed with myelodysplastic syndrome or MDS, a rare blood and bone marrow disorder that can lead to leukemia. Just six years after beating bone cancer, she would need another bout of aggressive chemotherapy and a bone marrow transplant.

Of the 18,000 Americans diagnosed with MDS each year, more than 300 have it as a result of the treatments that cured their first cancer, according to the National Institutes of Health.

"While radiation and chemotherapy kill the cancer, they also have ability to damage the DNA," said Dr. Stephen Nimer, chair of the MDS Foundation and director of the Sylvester Comprehensive Cancer Center in Miami. "People are surviving their first cancer more than ever before. And because of that, we're beginning to see more therapy-related MDS."

"Good Morning America" anchor Robin Roberts, herself a breast cancer survivor, is also battling therapy-related MDS. On Monday, she started chemotherapy in advance of a bone marrow transplant from her sister.

"My doctors tell me I'm going to beat this," said Roberts. "And I know it's true."

Unlike Roberts, whose sister turned out to be the ideal bone marrow donor, Langer waited three long months to find a match.

"There's nothing like waiting to see if you have a matching donor," Langer said. "For me, every week could have been the difference between MDS and acute myeloid leukemia."

But in May 2011, "Be The Match" found Langer's match: a college student named Maxine with whom Langer shares similarities far beyond bone marrow.

"She's actually a lot like me, which is so fun," said Langer, who will meet Maxine in person at the "Be the Match" national conference in November.

Langer quickly started chemotherapy to clear out her own bone marrow so it could be replaced with healthy cells from Maxine.

"The scariest part is the way they number the days: Day -10, day -9," said Langer of the countdown to the bone marrow transplant on day 0. "You know each day leading up to day zero is going to be worse. The good part is: the rest of the treatment is all to bring you back up. Everything that goes into you after day 0 is good stuff."

Now, more than a year after the transplant, Langer's life is finally normal again. She's back to work at a public relations firm. And her red hair, which she's now lost twice, has reached a medium-length "mullet stage."

While a bone marrow transplant is the only chance of curing MDS, new drugs are helping people live longer with the disorder.

"Ten years ago, there were no therapies approved by the FDA for the treatment of MDS," said Dr. Mikkael Sekeres, director of the leukemia program at the Cleveland Clinic. "Now we have three."

While the diagnosis is hard to swallow, Sekeres described cancer survivors facing MDS as strong and gracious.

"Invariably they come to the realization that they wouldn't be having the conversation if they hadn't taken the original chemotherapy," he said. "They say, 'I'm lucky to be alive; now let's deal with whatever's next.'"

Langer agrees that when it comes to MDS, "attitude is everything."

"You can really scare yourself into thinking the worst and hearing scary narratives from other people. But when you go through it, and once you're on other side of it, it's not as bad as you thought it was going to be," she said.

After five MDS-free years, Langer will be considered cured -- a survivor, for the second time.

"I know this sounds cliché, but you learn some really valuable lessons that can't help but creep their way back into your life," she said of life after cancer and MDS. "We cancer survivors can do some great things."