[KristyS]

Good luck Doreen! You are going to sail through this….

[KristyS]

Thank you Lindajo,

I hope you find the answer. I am sure you are glad to not have transfusions any more…but do you think they might help with your activity level?

[KristyS]

Quote:

Just curious, is there any autoimmune blood or bone marrow failure syndromes in your family? 3 of the last 4 generations of women on my side had blood disorders. [/QB]

First of all…as far as her MDS diagnosis, they really hesitated for 2 years to diagnose her. Only her red cell line has been affected and we were all hoping it would turn around. Finally due to fibrosis she developed and blasts (less than 5) they officially diagnosed MDS RAEB early this year. She still have normal platelets and just below normal white cells.

Family history – hard to say. A great aunt of hers has Lupus. Other than that, some solid tumor cancers on her paternal grandfather’s side…not said to be a risk factor.

[KristyS]

mdsmom

My heart aches for you because you have your precious grandchild to worry about as well. That is just heartbreaking but we have to remember children are much more resilient than we are. I have a 2 year old who is not going to understand why his sister just disappears and then is going to be so weak and sick. This is just a cruel situation. He loves his “sissy” so much. The two of them are inseperable and it is so sad that he has to be exposed to such horror at a young age.

[KristyS]

Hello MDSMOM,

I too am a mom going through this. My daughter is 14 and has RAEB. She has to have a transplant in August. I am terrified, but what can I do…….we don’t have a perfect match so we are using cord blood which I prefer anyway due to lower chance of GVHD. We live in San Antonio, so just down the road from you. My dauthers website is http://www3.caringbridge.org/tx/mia/
feel free to follow our journey. I just had to write and say I agree THIS SUCKS !!!!!

[KristyS]

She has MDS RA or RAEB. Believe it or not the pathologists at MD Anderson cannot agree on this one. One biopsy said RA, the next RAEB then the same pathologist who did RA looked at it and said it is the same. I guess depends how they categorize the blast cells. Apparently with staining, they can detect things that are not easily apparent, but the percentage can be calculated a number of different ways. For example, as a percentage of non myeloid cells or percentage of total cells. Blah blah blah. We tried a round of Dacluzimab and so far have not seen results. Wendy – thanks for the info. I would like to try thalidomide next. She has no good match found yet, but they are still looking.

[KristyS]

Hi Alexa!

I am the mother of a 14 year old girl who found out at age 12 that she had a “wierd anemia” like MDS. Right now they are calling it “refractory anemia” because like you she has no blasts, but because of her young age and normal chromosomes, they are reluctant to say full blown MDS. MD Anderson is willing to try a monoclonal antibody treatment on her before ATG or anything more severe. I will keep you posted how it works. I understand your feelings of depression because we have lived that for the last 2 years. It is very difficult to have a serious medical condition that the doctors know so little about. Feel free to email me anytime.

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