Hi all~
I've been postponing writing this because I am so perplexed, and have been a little discouraged lately........but here goes.......
I have heard conflicting reports about which is harder to treat...de novo or secondary....the latest is that we think the MDS was there, had just switched to AML when discovered....( I had blood work due to recurring vertigo issues and major bruising was evident)
Induction Chemo put AML into remission, but underlying MDS resurfaced. I am not a candidate for BMT/SCT....Last BMB Jan 2011 indicated no AML had resurfaced...
After 8 months of Vidaza, no appreciable results...(or did it keep AML at bay?)I can't resume because my counts are too low lately.....
Still~
Get CBC 2xweek
Platelet dependent--transfused 1/week
Blood Dependent--transfused every 2 weeks
Exjade: 1500 mg daily/ ferratin levels dropped 200/month--last 3 months and are now around 1300....(Dr swears that it doesn't affect WBC/Plt counts)
Supporting drugs like Neupogen and Aranesp when needed @ weekly Dr visits
Previous to last (Thurs 6/16) CBC WBC 1.2, Hg 8.8, Plt 17***
***All of these numbers are scarily close to when I was first diagnosed in Oct 2009 with AML
Last Platelets transfused Friday 6/17 : Post cbc--Bump to 90k!--highest ever! (A+ cells, my type--seems to matter; B platelets give worst results)
CBC Yesterday (Mon 6/20): WBC 1.3; Hg 9.0; Plt 49-
-pattern seems to be that I lose approx 10,000 platlets/day--I don't have symptoms of bruising until they are in the teens--never had major bleeding issues, thankfully!
I am anxious because my Dr seems confused as well and wants to do another BMB tomorrow...my last one was in January. I know that is the right thing before moving forward, but where to next? I don't have 5q- (or didn't last time--could that change?)
I honestly don't have a clear understanding of all of the particulars of this disease, as many of you do......I read and read and not all of it makes sense. The more I read, the more I wonder if there could be other forces at work, like low copper, or low B-12 or who knows what?
I don't have a copy of my lst BMB results...Dr just said I was low risk....should I get a copy of this one in the hopes that at least YOU all can help me decipher it?
So where to next? Revlimid? If I can get it at all? Other testing? (Got my copper tested, no results yet).... Dacogen?
Reduce/discontinue Exjade? I'm so confused and have been feeling overwhelmed about where to go from here--I look and feel pretty good, otherwise, which is why this is all frustrating--how can I be this sick, and it doesn't show? Just a little tired...It seems all I am doing all week is living between blood tests, drs' appts, and transfusions.........And I have noticed a lot of short term memory lapses recently....names/conversations... chemo fog?
I asked my Dr to contact Dr Alan List, @ Moffit in Tampa Fla....he seems to be the MDS expert...anyone ever seen him? Will he extend a professional courtesy to consult with my Dr? I can't even travel to see him at this point....
Any insight would be much appreciated....thanks....