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Chirley, I do understand why you desperately need a break from the daycare. The hassle of your situation must be exhausting. Bruce is in a little bit better situation in terms of being able to get most of his copper treatments at home...the downside has been very high out of pocket expenses for supplies and IV supplements. The doctor wrote a letter for our insurance, but so far, none of the costs have been reimbursed.
Bruce also wants to see if his copper levels will drop much without the supplementation...since they haven't risen noticeably with the IV copper, will the reverse be true?
In his report, Dr. Paquette offered Revlimid and Vidaza as treatment possibilities. But since Bruce is already so neutropenic (and platelets are getting low as well), Bruce didn't want to deal with possible side effects from those drugs now.
Bruce's hematologist called today. He doesn't want to start Bruce on Exjade immediately because some of Bruce's liver numbers aren't so great. So, the liver biopsy is back on the front burner again, so the doctors can see how much damage from iron has actually occurred.
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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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