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MDS Myelodysplastic syndromes

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  #1  
Old Mon Aug 10, 2015, 05:30 PM
cathybee1 cathybee1 is offline
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Location: Fort Jones, California
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Checking in -- Bruce

Hi all. Haven't been on in a long time, but just wanted to say Bruce is still managing his MDS okay with blood transfusions. He is now considered to have pancytopenia and has managed to make it thru getting a heart stent, hernia surgery and removal of his gall bladder in the past year. All in all, things are going just fine.
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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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Old Mon Aug 10, 2015, 06:03 PM
Neil Cuadra Neil Cuadra is offline
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Cathy,

Thanks for giving us an update. Please give our best to Bruce.

It must have been unnerving to go through those medical procedures with low blood counts. I guess they "fill you up" as best they can in advance, but the risk of infection after surgery must keep everyone on high alert. I'm very glad to hear that he's made it through them.

How have you dealt with iron buildup from blood transfusions?
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Old Tue Aug 18, 2015, 11:15 PM
cathybee1 cathybee1 is offline
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Neil, good old Exjade. Luckily, Bruce has had no side effects from it. He's cycled on and off of Exjade as needed.

Had a bit of a scare last weekend. He wasn't feeling good and we took him to the hospital. A Coombs test done in the hospital turned out positive, indicating he might have Immune Hemolytic Anemia. Tests were subsequently repeated and turned out negative. As everyone here knows, it's certainly a roller coaster.
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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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