Feeling Sad for Robin Roberts

SarahsMom

http://www.latimes.com/news/science/sciencenow/la-sci-sn-robin-roberts-myelodysplastic-20120611,0,375744.story

Bless her heart! Ugh.  She said her sister is perfect match for the bone marrow transplant, wonderful news.  I just think she is one classy lady and I'm sad she has to go through chemo again plus everything else to cure this pre-leukemia. 

jessica749

Agree. She is  a class act.  I feel sorry for people who live with this inthe public eye, but then at the same time, what a wonderful service they do focusing public attention on it, hopefully educating people.

mags20487

agreed...I started crying watching her announcement this morning.  She is one amazingand inspirational woman.  I never even heard of the condition and immediately started to research it when she said it. 

Maggie

FireKracker

After 5 years!!!!! It just goes to show you never let your guard down...

This breaks my heart.It is all over the TV on every news channel.

Find a damn vacine?cure...ENUF!!!!!!!

beacon800

Gosh, I didn't know til I saw it on this board.

The poor thing, she's been thru so much.  How lucky she has a sister who is a match.  That is a blessing.

I hope that it totally cures her.  It sounded like she has a good chance at total cure.  Praying for her.

Anonymous

My dear MIL died of MDS almost 12 years ago and now my FIL is battling the same disease, so my family knows this disease only too well. My heart breaks for her. But she is young and is blessed to have her sister who will be donating bone marrow, so those are both on her side for a good outcome. 

kathleen1966

I really love Robin Roberts. As this is "pre-cancer", I hope that she is in the best of health to have the transplant and that the transplant is succesful. It is horrible that the treatments we receive can, although rare, cause this condition for some.  I'm just glad they caught it early.  I wish she was on here so we could ask her a zillion questions......

SarahsMom

I was thinking that, as well - we should ask the mods if they could arrange to have a thread hosted by Robin or someone like her so we could interact.  Plus we could give her the understanding and love we give each other.  It would have been nice to reach out to Elizabeth Edwards, for instance. This is such an amazing community.

jessica749

Wouldn't be surprised if she probably is here, or has been here, or when she has more time free during treatment, will be here, but like most people, would be here relatively anonymously as a patient with a nickname, not flaunting her 'name'.

SarahsMom

Probably, good point!!

i just heard that Sheryl Crow has a brain tumor,  a meningioma, so thankfully benign. Interestingly, she is also 5-6 years post BC battle, like Robin. 

Suzanneb

My mother had Myelodysplastic Syndrome (MDS) that disease is no joke.  I pray and hope for the best for her.  She is very lucky to have a bone marrow donor as that is the only way to really go with it.  What kills me is we were told this was such a rare disease when my mom got it and it is being to become more and more common.

shorfi

It breaks my heart...

Pinkpearl39

It's reported to be due to chemo.

Pinkpearl39

This disease is reported to be due to chemo treatment.

JayeGA

I know. Worrisome.

JayeGA

I cried about this yesterday, but I'm sending her lots of light today. All things are possible, and she's such a strong survivor and a real classy lady. Hoping she comes thru with a minimum of discomfort.

Jaye 

Joanne_53

pinkpearl - it says "radiation" not just chemo .... both can cause this

Lee7

My dad developed MDS which then turned into acute myeloid leukemia very quickly. He had radiation (but no chemo) a few years prior.  I have to wonder if I would be more at risk for it also after having tx which included rads....Its a frightening thought.

Anonymous

Pinkpearl------they quoted stats as being 18,000 new cases of MDS a year, but only 300 being from cancer treatment (chemo or radiation); that's less than 2%.  (so it really is a rare SE)  In the majority of cases, they don't know what causes it. My MIL died of MDS within 4 months of diagnosis (progressed into full blown leukemia), but never had chemo or rads. My FIL has been battling with MDS almost 2 years, he did have radiation after prostate CA several years ago. Did it cause it? The doctors say no; we think it was something environmental since they both  had it.

Anne 

beacon800

Awb your post caught my eye. A distant relative and her sister both died from some similar blood disorder. A rare one. I always wondered if it could be environmental. They lived in Rhode Island. I heard pesticides can be cause. Strange that two members of the same household should get this,

YramAL

My grandmother died at the age of 91 from MDS. She never had cancer or cancer treatment of any kind. A friend's mom died from the same thing at 75. Also no cancer or cancer treatment. I hope that fear of Robin Robert's experience does not keep women from getting the treatment they need.

Mary 

Suzanneb

My mother initially had lymphoma that was treated with radiation only. She got MDS 7 years later and her doctors were not at all convinced it had anything to do with the radiation exposure.  They said there are environmental factors, chemical exposure as well as benzene exposure which is in cigarettes, gasoline fumes, etc.  I don't think they really know what causes it this, some people just get it. My mother actually got breast cancer after the MDS and the drugs they used to  treat the MDS knocked the breast cancer out.  I do know that the only way to stop that disease from progressing is to get a bone marrow transplant. I watched my mother's disease progress over 3 years  since she wasn't a candidate for a transplant, too risky. 

Suzanneb

Lee7,

I just saw your post.  My mother's transformed from MDS to AML and she died quite quickly as soon as that diagnosis was made.  I will say her quality of life was horrible the last 2 years. You don't know what your blood cells do for you till it isn't doing it's job anymore.

LuvRVing

Watching GMA this morning, they said that marrow donor registration is up 1000% since she made her announcement.  She is an amazing woman!

sflow

Jeez, now I got a message that Dr. Susan Love has leukemia.  Does anyone know anything about her treatment? 

JoanQuilts

Dr. Susan Love diagnosed with leukemia

http://blog.dslrf.org/?p=546&cpage=2#comment-71477

exbrnxgrl

Yes, I hope anyone hearing her story understands that this se is rare. With informed consent patients should be aware of this anyway. I also heard about the huge increase in marrow donor registration. I understand it is particularly important to get more potential donors who are ethnic/racial minorities. Dr. Besser mentioned that she had a PICC line in her arm and this morning she was wearing a one shouldered dress with an elbow length sleeve on her left arm that, mostly, covered it. I love her optimism and her "just do it" attitude. Caryn

JayeGA

Thanks for sharing that, LuvRVing, that's one bright spot in this thing, and Lord knows I've been trying to find one.

Jaye 

gpawelski

Myelodysplastic syndrome (MDS) is characterized by an excess of blasts in the bone marrow 5-20%. They become dysfunctional. The early stem cells don't make enough red cell, white cells and platelets. You don't have to receive chemotherapy and/or radiation to get this disease. Simple aging is enough. Most patients with MDS who have not received anti-cancer treatment are in their 70's and 80's.

While you may avoid the thought of leukemia when reading information on the internet, the only difference between MDS and leukemia is that the term "leukemia" is only used when the number of blasts reaches 20% or more. This is not all negative. A person with a 5q- deletion may take Revlimid and live quite a long time with no transfusions.

However, treatment-related MDS or secondary MDS is often more severe and difficult to treat than de novo MDS (unknown changes to the bone marrow). When people die from this, it is usually because they can't make enough infection fighting cells and get overwhelming infections such as pneumonia. Or they develop acute leukemia. This type of leukemia that develops in people with MDS is virtually untreatable (different from other kinds of leukemia).

For younger patients, the best hope is a stem cell transplant from someone else's bone marrow. But aside from transplant, there are no magic bullets. This is a bad disease that affect mainly older people and those that have received anti-cancer treatment.

I wish her luck!

http://cancerfocus.org/forum/showthread.php?t=281

profbee

I love Robin Roberts!  What a lovely woman!  I cried when I saw her story.  It's just so much to have to gracefully endure, but she will.  

 Lots of love sent out to you, Robin, from your community here!