Monday, June 11, 2012

Robin Roberts Has Rare Blood Disorder


I don't think I can say it any better than how Robin Roberts says it, so here is her letter to everyone about her condition and her fight. She is one tough person and I wish her all the best.

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

32 comments:

a non a miss said...

Love her. Good luck Robin, I wish you the speediest recovery!

Unknown said...

don't know her, but she seems to have a good spirit, I wish her the best.

Gina said...

She is a class act. No self-pity or attention getting in that letter. I wish her the best.

CantHaveMyPurse said...

She's the best!!

Seachica said...

My first reaction was to make a snarky comment, but I can't. I'm impressed with how long she must have known before making it public, and the classy way she is handling it. I hope everything goes well with her treatment. I prefer to watch GMA, and now I understand why -- no grandstanding, no egos, just keeping an eye on what is important.

SusanB said...

Not a big fan of GMA, but she strikes me as level-headed and classy. Best wishes to her.

Little Miss Smoke and Mirrors said...

She didn't plug bone marrow donor registry, so I will: http://marrow.org/Home.aspx

Better yet, let Donal Logue explain it:
http://www.youtube.com/watch?v=6Su7vBbJp28&feature=channel&list=UL

Best wishes, Robin!

pilly said...

bethedonor.org

If you're not an organ donor. Think about it.

My best friends Mother received a kidney (YEARS) ago and to this day she is grateful. We celebrate her right kidneys birthday each year!

Think about becoming a donor

yawnathon said...

My father's life was prolonged a good three years because of a kidney donor. The donor was a 35 year old firefighter who was killed riding his motorcycle. He wasn't wearing a helmet. He had a wife and two kids. Every single organ his family could donate was donated. So many people received the greatest gifts because of one man's circumstances. His mother worked in the hospital where a lot of transplants took place. She contacted (I'm fuzzy on the details of how but I do realize it is not normal) most, if not all of her son's organ recipients to attend a celebration of life in his memory. Our family was the only one to take her up on it. It was a year after her son passed.

Meeting his mother, sister, wife, children is an experience I'll never forget. After the initial awkwardness and tears we swapped stories about her son and how my father's life had improved. I remember walking away from it noting it had been the most emotional draining but fulfilling experience I'd ever had. My mom still keeps in touch with our donor's mother. It's not a usual donor experience, but I consider anyone who signs up to donate and makes their wishes known to their families pretty goshdarn special.

stubbins said...

It's not that rare. MDS is never simple to diagnose. And the emergence of its next phase (Acute Myeloid Leukemia) will (far more often than not) will be dire and harsh, particularly for those who have had prior cancers -- or are older.

I have MDS as well. What's different in my condition is that my doctors have no precedent or standard for my condition... which is due to an apparently unusually excessive level of chemo which I received from a prior hema doc.

There are so many emergent improvements in both bone marrow and stem cell transplant options. Discerning which procedure to undertake is not a quick and facile choice. A "short" cycle (from diagnosis to a chemo and/or radiation prep protocol)seems to be at least three months.

So how am I? Right now I'm more than lucky. My lymphoma hema doc created the PCI protocol which contains and controls all B cell cancers (I mean it -- ALL b cell cancers). And my stem cell hema doc has been one of the real innovators of techniques and patient treatment.

The duration of the process will be what it will be. I've had ever so much time at that hospital as an inpatient and couldn't be more engaged with the process and (just as vitally) with the people (staff and patients) there.

By the way... that hospital is New York Presbyterian. ABC will be airing what seems to be a very genuine and quite good documentary series this summer on Tuesdays (starting in July) at 10 PM. It could be worth watching. (Why? It's not on Bravo!)

Again, MDS just isn't a simple diagnosis. Yet it simply isn't rare... particularly for patients who have received chemo or who simply are older with marrow issues.

Unknown said...

stubbins, thanks for sharing your story, I hope your treatment is going well and that your luck continues!

nunaurbiz said...

I signed up for the bone marrow bank years ago. The chances that you'll ever get called to proceed are SLIM. Six months later, they called me. There was a Korean woman who needed a bone marrow transplant and I was the closest match, since none of her family qualified. They called me in to do further tests and I was overjoyed to be able to help. It turns out they found someone closer who was a match and I pray that woman is still alive today. I urge EVERYONE to sign your MVD form or whatever you have in your state to donate your organs and sign up for the bone marrow bank today!!! www.marrow.org

MontanaMarriott said...

I pray for her speedy recovery

AuntJess said...

Classy lady. Wishing her all the best luck. Hopfully she'll beat this and come back better than ever.

wacko jacko said...

Robin's strength is so admirable. She's so goofy on GMA. I can only imagine she will tackle this like she did breast cancer. Team Robin :)

Unknown said...

ok, reading stories about kidney transplantation makes me cry.
i'm going to a second transplant team tomorrow to see if I have anybody that I know that will match.

I'm so sick of dialysis, dammit. (where I am right now.)

CharRicho said...

Aw, my Grandma died from MDS, but she was 86 years old when she died. Robin is much younger, hopefully her prognosis is brighter.

Momster said...

I've always liked her, and I hope she beats this. I, too, have a rare bone marrow disease, a myeloproliferative disease called essential thrombocytosis. Big words, eh? I have put off having the bone marrow testing (mine would be thru the hip) because it scares me.
Thanks for sharing your stories. Hugs to all of you.

auntliddy said...

Well, you all convinced me !! Im gonna be organ donor and that bone marrow thing !!

auntliddy said...

Every good wish, and let us know what happens!!!!!

auntliddy said...

Poor robin! She keeps getting bad news. Now i dont watch her show- or any daytime tv- but im wishing all the best for her!! And then, powers that be, can that be it for her for a while? Lol

old ;ady said...

Stubbins I will add you to my prayer group list it includes a lot of different church groups and people. I totally like Robin and hope it goes well for her. I have been on the Bone Marrow Doner list since my Mom's cancer 1989. I was matched to a lady in NC with breast cancer and had to go in for further testing. I ended up not the match,but one of the 2 others were. I am a mix of Native American, Black, German, Irish, Dutch. They need more Blacks to sign up. They also have a problem with people saying no when they match someone. I was so happy that I was a possible match its a chance to save a life. If you save one life you save the world.

julaine said...

My husband was 46 when he got the news he had MDS. He tried experimental treatment and a stem cell transplant only to die 4 years later. The statistics for this disease are frightening and there is a lot the doctors simply do not know about how the disease will progress or respond to treatment.

I wish Ms. Roberts the best. She is in for the battle of her life.

Turkish Taffy said...

I have admired this woman for yers. Class act all the way.

Both my mother and sister donated their organs when they passed away. I cannot tell you how much comfort it gave me in my grief to know they had done such a splendid and noble act.

JJ said...

I love Robin Roberts and GMA, so this is sad. What makes it very sad is that my mom died five weeks after being diagnosed with MDS. Reading her statement brings me back to those first few days when we were grasping for hope.

Stubbins, how I wish my mother's story mirrored yours. Prayers to you.

And yes, Be A Match.

crichmond1000 said...

Late last year my 14yo daughter was diagnosed with Acute Lymphoblastic Leukemia, shortly thereafter, she developed an acquired immune response to being so ill, HLH, Hemophagocytic Lymphohistiocytosis. In a nutshell, her aggressive white cells when into overdrive to kil the cancer and began attacking her organs, blood and skin. Her marrow stopped making any blood. During this time, she has received countless transfusions of red blood and platelets. It seemed unbelievable that they could put that much blood into my daughter and she didn't burst.

While preparing for a marrow transplant, she was given a rare transfusion of white blood cells and her bones started to produce good blood. Luckily, we don't need the transplant at this time. After 7 months, we hope to be back home before the 4th of July.

While in the hospital for more than half a year, I have met so many sick children. Many of them will need a transplant and most of them need many transfusions.

Your donation and registry really does save lives. Before my daughter became ill, I rarely put much thought into things like this. I would give blood on occasion and pat myself on the back. I never thought about platelets or white blood cells. As soon as we get home, I will be on a schedule to donate regularly and I will certainly be on the registry to help save someone else's kid, or mom or dad.

hmmm said...

My father was diagnosed with this as a fit fifty year old. He is now an active, mentally agile 86 year old. His metabolic age came in at 75.

car54 said...

I wish her the best--she's had a rough time and she still has a wonderful attitude. Thank God for her sister being a match. Organ donation is a wonderful thing.

yawnathon said...

@Frances Parker, I'll be crossing my fingers for you. I know secondhand how awful dialysis is. Don't give up hope.

astrogirl said...

I give blood but after reading your stories I am going to join the bone marrow registry.

Lelaina Pierce said...

I don't know much about MDS. Seems unfair for a person to have to go through cancer, now this. I wish her the best.

Unknown said...

@yawnathon thank you <3 I'm trying not to, but its so difficult =\ I have bad days, and I have really bad days.

But I have my kids, so that makes everything tolerable. I love being around to hug them, so thats why I do it.

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