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The latest on this Medical Adventure:
Bruce had a consult with Dr. Paquette at UCLA on Monday. Dr. Paquette talks through his reasoning, but also talks very fast, so I'm not sure my notes were adequate to capture his impressions. But key points I got were:
1) Bruce's bone marrow abnormalities are very mild. Dr. P is not calling the problem MDS.
2) Dr. P believes that the problem might be autoimmune. He ordered some t-cell testing that wasn't done previously, which will take 2 weeks for results.
3) If autoimmune problem is confirmed, next step might be a trial of prednisone and/or cyclosporin.
4) A fresh take on the copper issue. Like the local hematologist, Dr. Paquette did not think the copper levels were low enough to warrant fingering it as the culprit, and suggested that if the ceruloplasmin (the protein the copper binds to) is low, you can add all the copper into the system you want, but any excess beyond the binding capacity of the ceruloplasmin will be excreted. So, as Bruce's ceruloplasmin is below normal, the copper will remain sub-normal as well. This was the complete opposite explanation of the family doctor to how the process works. In any event, neither Bruce's copper nor ceruloplasmin was tested prior to last October.
We're glad we made this trip. Dr. Paquette did tell Bruce he would like to see him more often than once a year, which made us feel very welcome.
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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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