If you Google "myelodysplastic syndrome" -- as I'm guessing many of us did in the wake of the announcement that "Good Morning America's" Robin Roberts has it, you'll find, as she says, "some scary stuff."
Roberts -- and ABC News' chief medical expert, Dr. Richard Besser -- are fighting the Wikipedia doom and gloom by turning her illness into a teachable moment.
Here are some highlights of the statements from each that ABC News released Monday (the full versions are below):
-- Roberts, a breast cancer survivor, has been diagnosed with myelodysplastic syndrome, also known as MDS, which she describes as "a disease of the blood and bone marrow [that] was once known as preleukemia." She's known about the diagnosis for a while. ("I received my MDS diagnosis on the very day that Good Morning America finally beat the Today Show for the first time in 16 years. Talk about your highs and lows!")
-- At 51, she's been told she's younger than fitter than many with the disease, which in her case is considered potentially curable. "Published statistics don’t shed much light on her prognosis as the vast majority of patients with this condition are diagnosed in their 70s and 80s," notes Besser. "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."
-- She's starting chemotherapy, which will be followed by a bone-marrow transplant, the donor to be her sister [identified by the Associated Press as New Orleans TV anchor Sally Ann Roberts], who's said to be an "excellent match."
-- She'd like you to think about becoming someone else's excellent match. "Bone marrow donors are scarce and particularly for African-American women," notes Roberts. "Many people don't realize they can be bone marrow donors. I encourage everyone to sign up on a donor registry like bethematch.org.
"Here we go again…
"As many of you know, 5 years ago I beat breast cancer. I’ve always been a fighter, and with all of your prayers and support, a winner.
"Sometimes the treatment for cancer can cause other serious medical problems. Today, I want to let you know that I’ve been diagnosed with MDS or myelodysplastic syndrome. It's a disease of the blood and bone marrow and was once known as preleukemia.
"My doctors tell me I'm going to beat this -- and I know it's true.
"If you Google MDS, you may find some scary stuff, including statistics that my doctors insist don’t apply to me. They say I’m younger and fitter than most people who confront this disease and will be cured.
"Today, I will start what is known as pre-treatment -– chemotherapy in advance of a bone marrow transplant later this year. Bone marrow donors are scarce and particularly for African-American women. I am very fortunate to have a sister who is an excellent match, and this greatly improves my chances for a cure. As you know from my recent interview with Mark Zuckerberg, organ donation is vitally important. Many people don't realize they can be bone marrow donors. I encourage everyone to sign up on a donor registry like bethematch.org.
"I received my MDS diagnosis on the very day that Good Morning America finally beat the Today Show for the first time in 16 years. Talk about your highs and lows! Then a few weeks ago, during a rather unpleasant procedure to extract bone marrow for testing, I received word that I would interview President Obama the next day. The combination of landing the biggest interview of my career and having a drill in my back reminds me that God only gives us what we can handle and that it helps to have a good sense of humor when we run smack into the absurdity of life.
"Bottom line: I’ve been living with this diagnosis for awhile and will continue to anchor GMA. I love what I do and the people with whom I do it. Along with my faith, family and friends, all of you at ABC News give me the motivation and energy to face this challenge.
"Going forward, it’s business as usual at GMA, which means I’ll be right here every day with George, Sam, Josh and Lara. When I miss a day here or there, I’m fortunate that some very talented friends at ABC News will fill-in. When I undergo the transplant later this year, I’ll miss a chunk of time.
"When I faced breast cancer, your prayers and good wishes sustained me, gave me such hope and played a major role in my recovery. In facing this new challenge, I ask humbly for more of your prayers and love – as I will keep you in my mine and update you regularly on my condition.
"Love and blessings,
Robin’s Next Challenge: Myelodysplastic Syndrome
By Dr. Richard Besser
"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.
"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."