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Old Sun Feb 1, 2015, 04:10 PM
JordanN JordanN is offline
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Join Date: Nov 2014
Location: California
Posts: 59
Smile There's always reason for hope

Hi, Annette!

I'm so sorry your mom has been through so much and is having some difficulties now, but I just wanted to let you know that there is always reason to hope for the best!

My dad is 80 yrs old and was diagnosed with MDS RAEB-2 11 months ago and given a very grim prognosis given his initial blood counts, marrow findings, and age. He has had no positive responses to any treatments (vidaza- no response, neupogen - no response) and has, in fact, had toxicity issues with all medications tried. He has had several strong adverse transfusion reactions and appears refractory to platelet transfusions. His ability to do the active things he used to enjoy is gone, but despite this very frustrating and dire picture, he is still staying remarkably stable. His blood counts while low are staying within a relatively safe range. His ANC is never above .2, and yet, he somehow manages to avoid getting infections. His Hgb is low, and he is limited in what he can do, but he doesn't have any pain and has friends and family that are able to bring fun times to him. We are well aware that all this can change very quickly, but we are really happy that he is doing as well as he is given some pretty bad factors. He is comfortable and stable and may be able to continue this way for some time.

It sounds like your mom has done really well on Vidaza, is still able to fight infections with a little antibiotic help, is able to do much of what she enjoys, and possesses a great attitude with a sweet daughter! As you say, we have to learn to live a "new normal," but it sounds like your mom has a lot of the ingredients for success and lots of reasons to be hopeful!

I wish you and your mom all the best and will be hoping and praying for much happiness and health for you both.
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