It has been a long while since I posted, but I have kept up with the board. My mother was diagnosed with MDS, likely transforming into AML in feb 2005. Referred for potential decitibine clinical trial, but was doing quite well and did not qualify back then for trial as her numbers just hovered at the AML side of things. She stayed quite healthy for about 6 months and was receiving procrit every week, and transfusion about every 12 weeks. In August she started to trend towards more frequent transfusions and the white count started its climb.
Last Monday 10-31-05 her cbc was okish for mds…9.6 hemo, 3 red, 170 platelet…wbc was 70,000..high. By this past monday the 8th, she was SICK…4 hemo, 40 platelet, 1.9 red, 120,000 wbc. Needless to say she is in the hospital and the verdict is AML, which seems to have transformed overnight in a BIG WAY. She was very sick and since last night she has needed 6 units of blood to get hemo to a 6. This came on so suddenly and the dr says that AML can mutate like that in hours.
So our grace period since diagnosis is over it seems and I feel blessed that she was very healthy for 9 months. I had mentioned long ago that I would post about her decitibine experience if she ever started the drug. So she is starting this week. For now they are just trying to stabilize. Tomorrow the port goes in. If all looks ok, she will start the drug thurs or fri. It is a 5 days a month treatment course. I have no idea what to expec. Tonight I asked the dr about results thus far in his study. He says that for AML the stats are minimal because most of the studies have been for mds. But he said in his study, the mds patients had 12% with “complete response” ( I wonder what this means exactly? remission?) and another 40% had “some partial response”. So here we go. I will let you all know what happens. If this does not work, and he said they will know after 2 months, or two rounds….he will pull out the “big guns” and go for the old consolodation/induction chemo treatment.
Keep prayers and fingers crossed. I hope for all of us this drug looks promising.
Kristy K
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