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Originally Posted by Sally C
Dear Matthew,
I have been following your journey with your Mother. Your knowledge of all is this so impressive but your love and loyalty to your Mother is even more so.
Like Marlene, I thought I would share my husband's story - I pray that it will give you, Mola-Tecta and anyone else in this situation more hope. I will try to condense as much as possible.
Our first hematology visit was 12/1/08. In 6 months my husband's CBC went from normal to concerning. While still trying to get a firm diagnosis he had to start transfusions in Jan., 2009 - he ended up needing over 125 blood/platelet transfusions. After all attempts at getting a firm diagnosis in our local area (some thought MDS, some thought AA), he was accepted for a clinical trial at The NIH. Dr. Neal Young is considered to be the top hematologists in the world. In a week they diagnosed Don with MDS and he started a clinical trial to knock out his immune system, which it did, as they thought it was autoimmune related. He received Campath and a month out, his neutrophils hit 0.0. At that point he was on our hematologist's death list. His platelets hit a low of 4,000. In the spring of 2011, NIH started a new clinical trial with Promacta - Don was the first MDS patient to receive it. Once his platelets hit 100,000 they stopped the med in the summer of 2012. At age 76 he remains transfusion free - recent check his platelets were 83,000. Platelets were the last to rise with Don but they eventually caught up. Right now his whites are normal and reds barely below normal. As an aside, it took his marrow 1 1/2 years to present with MDS - he also had a very strange case of a very strange disease.
I think it's wonderful that Dr. Young is willing to confer with your Mother's doctors. As I said, he is the best and we have no doubt that Don would not still be with us if it weren't for their guidance.
I wish you and your Mother all the best.
God Bless all in this situation. Keep the Faith!!
Sally
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Dear Sally,
You don't know how much I appreciate your kindest of words, and for sharing information about your husband's amazing recovery.
My mother still has classic aplastic anemia. She had a few abnormally shaped red blood cells in her last bone marrow biopsy, but the doctor said they can be normal in small numbers, even in people with normal marrow. They can be caused by a number of different things (high iron in blood, medication {Pomacta}, classic aplastic anemia, etc.). She said my mother has a small PNH clone with "empty" marrow once again in her bone marrow biopsy, which are the classic hallmarks of aplastic anemia.
What subset of MDS does your husband have, by the way, if you don't mind me asking?
Wishing your husband the very best of health.
Please take care.