Entries in Myelodysplastic Syndrome (3)


Maine Family Overcomes Triple Dose of MDS

Courtesy the Durkin Family(NEW YORK) -- For the Durkins of York, Maine, the ice hockey rink was like a second home.  All three siblings -- Jason, Chris and Lauren -- grew up on the ice and parents Sharon and Mike were always rooting them on from the sidelines at matches and practices.

But a place of so many memories would become the site of the family’s first major crisis when oldest son Jason was pulled aside at hockey tryouts back in 2006.

“His coach realized that Jason wasn’t keeping up,” mother Sharon Durkin recalled.  “And something just didn’t seem right.”

A blood test with the family doctor only intensified the growing drama. Then 18-year-old Jason was diagnosed with myelodysplastic syndrome or MDS, a rare blood disorder that affects the bone marrow.  Doctors came to learn Jason had been suffering from MDS for some time and urgently needed a bone marrow transplant.

Within a week, good news and bad news arrived, doubling the family’s crisis; Jason’s brother Chris would be a perfect donor match except a blood test showed that Chris also had MDS. The Durkin boys were now both in need of bone marrow donors and transplants.

“That was a tough night.  Let’s just say a very, very tough night,” Sharon recalled.

Seventy percent of patients don’t have matching donors in their families and need to find an unrelated adult donor, or cells from donated umbilical cord blood, according to Be the Match, an organization that helps match marrow donors to recipients.

In March 2007, Jason found a donor from Germany, and a few months later, his brother Chris also found a match.  Both went on to have successful bone marrow transplants, although not without complications.  Because they were children, both teenagers needed to be quarantined for a full year to protect them from further illness and infections, which meant no physical contact with others outside the home.

The roller coaster ride for the Durkins was filled with ambulance rides and ICU visits.  But even as their family battled the double dose of MDS, they maintained their positive outlook, encouraging thousands to become bone marrow donors, organizing drives to raise awareness and charity events to increase donor registration.

Just when family and friends thought the family had put the medical drama behind them, another painful chapter came -- this time for younger sister Lauren, then 15 years old.

After two years of watching her brothers climb back from their transplants, Lauren, whose prior annual test for MDS had been negative, was diagnosed with the disease in 2009.

With the third diagnosis, the Durkins learned that the children had a genetic form of the disorder, which is extremely rare. The Durkins are helping the National Institutes of Health and Sciences in Boston learn more about MDS -- a gift born from their struggle.

Despite the many registration drives, Lauren couldn’t find a donor match.  She had a blood cord transplant of stem cell instead, and it saved her life.

Copyright 2012 ABC News Radio


Myelodysplastic Syndromes: The Cost of a Cancer Cure

Jenna Langer(CHICAGO) -- 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."

ABC’s Good Morning America co-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, the National Marrow Program 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."

Copyright 2012 ABC News Radio


Robin Roberts' Next Challenge: Myelodysplastic Syndrome

Donna Svennevik/ABCBy DR. RICHARD BESSER, ABC News Chief Health and Medical Editor

(NEW YORK) -- Every morning we wake up to Robin Roberts on Good Morning America. Recently, while she has been brightening our mornings, she has also been dealing with a new health challenge, something called Myelodysplastic Syndrome or MDS. This is a rare blood disorder that affects the bone marrow and usually arises on its own. However, on occasion it can occur as a result of cancer treatment as it did as a result of Robin's successful breast cancer treatment. For the past several weeks, at her request, I have been helping her to understand more about this condition and to connect to some of the leading experts across America.

MDS is a malignant disorder of the bone marrow. According to the NIH, approximately 18,000 people develop MDS each year but only several hundred of those are as a result of cancer treatment. MDS can affect all of the cells in our blood. As a result you can see problems related all of the blood components, red blood cells, white blood cells and platelets. Problems with the red blood cells show up as anemia or low blood counts. Problems with the white blood cells, a key part of our immune system, can lead to increased number and severity of infections. Problems with platelets, an important part of our clotting system, can lead to bruising. In addition to abnormal normal blood components, you can see immature cells called blasts. These cells are a harbinger of leukemia. In fact, MDS used to be called pre-leukemia due to the progression that is sometimes seen from MDS to leukemia. Sometimes this progression takes place quickly, sometimes not all.

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The primary approach to treating MDS is a bone marrow transplant. The goal is to take bone marrow from a healthy donor and use it to replace and repair the abnormal bone marrow in the MDS patient. Oncologists use chemotherapy to eliminate all of the cells in the patient's bone marrow and then infuse the new bone marrow. For this to work well, you need to have a bone marrow donor who has similar immune markers on their blood cells. The more closely matched the donor and recipient are, the more likely the immune system will not reject the new marrow and treatment will be successful. A perfect match is seen between identical twins. The next best thing is if there is a sibling with identical immune markers. In Robin's case, she is quite fortunate; one of her sisters is an excellent match with identical immune markers.

Robin's treatment begins today. She will be given a drug over the next few months to prepare her bone marrow for transplant. The side effects from this preparatory treatment should not be severe. She may feel a bit more tired than usual. Then, once her bone marrow is ready, she will undergo a bone marrow transplant. Her doctors can't say exactly when this will take place, but probably sometime this fall. During that period, she will need to be away from work for a number of months while her bone marrow recovers.

Many patients with MDS are cured and go on to live long and productive lives. The good news is that her doctors expect Robin to be cured. She is young and incredibly healthy. Published statistics don't shed much light on her prognosis as the vast majority of patients with this condition are diagnosed in their 70's and 80's. Robin has a donor who is an excellent match, an important prognostic factor. And so importantly, she has the faith, the spirit, and the will to beat this.

In addition to treatment, scientists know the intangible, unquantifiable importance of support -- friends and others -- in these situations. And in that way, Robin is blessed with family, close friends and supporters across the country and the world.

Click here to leave a message of support for Robin.

Copyright 2012 ABC News Radio

ABC News Radio