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My hubby, Ron was dx 2/18/09. Today we met with our first Hemotologist who dx Ron with MDS, but, 3/27/09 we go back to Emory to see if their numbers (counts of blasts, etc) are the same as the one's we received today. My guess is they'll be very close, because, looks like the lab work was actually done at Emory afterall. (I got copies of everything to handcarry to Emory next Friday, as I don't want to rely on them forwarding it, etc). Then, we'll ask to come to Emory regularly vs going back and forth between docs as I alluded to in earlier emails.

Okay - experts, let me know if their is anything encouraging in what they gave us today: Not sure what to report... I have pages of reports, seem to be written in greek... I'm looking at lots of numbers... Interpretation basically states abnormalties in Chromosome 5, 7, 3, 6. Positive for deletion 5q31. Mentioned Ron had "MDS associated with del(5q)". The blasts are 4%. Also, indicates Anemia. Pancytopenia.

Today Lab results: WBC 2.9 K/ul, Neutrophil 22.1%. Lymphocyte 66.7%, Monocyte 7.9%, Eosinophil 2.4%, Basophil 0.9%, Neutrophils 0.64 k/ul, Lymphocytes 1.93 K/ul, Monocytes 0.23 K/ul, Eosinophils 0.07 K/ul, Basophils 0.03 K/ul, RBC 2.71 M/ul, HGB 9.3 g/dl, HCT 25.4%, MCV 94 um*3, MCH 34.4 pg, MCHC 36.6%, RDW 17.1%, Platelet Count 110 K/ul, MPV 10.1 um*3

3rd Procrit Shot today. Doesn't appear to be working. Of course, hoping it was RA only, we would have had a better chance, but, it's not, so, they weren't expecting results.... just hoping for them instead. Also, while we were first told, Ron would probably be somewhere between the IPPS of Low to Intermediate-1, we were informed today Ron is Intermediate-2.

Doctor recommended a Daily drug, I believe called Revlimid, but, because we're opting to go follow orders of Emory head Hemotologist/Oncologist, our local Hemotologist/Oncologist suggested we wait until Emory doctor confirms and comes to same conclusion due to protocol. Emory appt 3/27/09. Ron is very very tired right now, I'd like to start meds, like yesterday! But, one more week will be okay. I may see if they can work him in sooner than Friday next week, but, at least our appt is Friday 3/27/09.

PS. It's very difficult, because, Ron is very depressed with the sudden onset of this disorder, and just a few months ago he was out and about, etc.... type-A kind of guy... etc... now, all he wants to do is sleep. I wish I could do something for him. I just try to understand and not to put pressures on him.