Hi Chirley
We went to the Family Doctor yesterday, who told us that Bruce is still experiencing quite a bit of liver inflammation. Though his copper level has come up a bit (still below normal) and his reticulocytes are okay, the ceruloplasmin level has not gone up. So the doctor feels that the ceruloplasmin, which works in the liver, has not been able to access the increasing levels of copper -- meanwhile the bone marrow is working as hard as it can but without all the necessary ingredients.
The doctor still does not have the results back from the metabolic testing from 2 weeks ago. His plan is now to consult with a copper specialist (I admit at this point I raised some doubts about there being such a critter
). He is still thinking that IV infusion of copper will be the next step, but hasn't scheduled it.
I expressed some impatience at the length of time it has taken by the Doctors to recognize that Bruce doesn't seem to be metabolizing copper. I still think this Doc is our best option -- he asked at some point whether we wanted to go back to the Specialist in Los Angeles, but the MDS Specialist sort of washed his hands of the copper issue by saying he didn't know anything about it.
So guess it's time to go back to pubmed and see if anything new has rolled in. I personally believe that we won't be able to rule copper deficiency in or out as a cause of the MDS like symptoms until we can get Bruce's levels back into the mid-normal range.
Other news...Bruce is still "holding his own" from the Aranesp injections -- His Hbg has stayed in the low 9's from the Aranesp injections and actually went up a bit from 9.0 last week to 9.3 this week. Last transfusion was in mid November.
That's all for now. We're packing up this week for a few days of skiing (I ski, Bruce watches) next week in eastern Oregon. It seems like we are firmly in this La Nina pattern -- it has been dry and warm the last few weeks, with that forecast continuing, but there should still be enough snow to ski on. Quite different from the weather you have been having.