[Chirley]

Hello,

I saw my haem doc this am and he showed me a small portion of my BMB result. It shows that I still have dysplastic red cells, still with ringed sideroblasts and increased platelet precursors. I didn't see any other portion of the result except blasts are back down to 3%. Even though I still have MDS, this is great news because the doc says today that he doesn't want to give me Vidaza again because he thinks it may have increased the copper metabolism problem. He thinks this because the lab has looked at my previous BMBs and not seen any evidence of copper deficiency prior to starting Vidaza. So we are back to square one in regards to the cause of my metabolic problem and how long I may have had it.

The oral copper doesn't seem to be holding my levels now and this weeks test shows my serum copper has fallen to 10 (13-25) from 14.4 last week. My haem doc isn't looking after the copper side of things and the neuro doc and the Prof are both on holidays so all my haem doc was willing to do was to increase the oral copper dose to 6 mgs/day. He is also reluctant to start venesections (don't know why) for the increased ferritin and also doesn't want to start Exjade because he doesn't know if it will interfere with the iron/copper balance and whether copper may also be chelated. I'm booked for a repeat MRI brain, cervical and thoracic spine next Friday.

So, it's watch and wait again.

Regards.