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A little update
Bruce's copper is subnormal again, and has been for the last 2 blood tests.
We got the marrow results back. The hematologist said there is very little change change from last year. The pathologist is still calling what he has macrocytic anemia. There is a very slight increase in ringed sideroblasts this time round. There are no genetic abnormalities.
At first, both of us were a bit overwhelmed because after all this time, there is still so much uncertainty. But it really is good news that there has been so little deterioration in the appearance of the bone marrow.
Our family doctor has written a page of questions for our consultation in Los Angeles in 2 weeks. The local hematologist is finally getting curious about why Bruce's copper levels can't be normalized. We raised the issue of Wilson's Disease with the hematologist. I provided him with the name of a doctor at the Mayo Clinic who wrote one of the articles about copper deficiency and bone marrow abnormalities. So...we are recruiting reinforcements.
Meantime, Bruce has stretched out his interval between transfusions a little bit. His last one was September 28, and as of yesterday, his hgb was still at 8.7 (not bad for him).
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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