March 8, 2005 at 2:08 pm #4523PamyRnMember
I know you have been in remission for a year now. When you had your last bone marrow..by any chance did any of your cells show some dysplastic changes…I know my blast count was 3 but pathologist said slight changes in some cells indicative of possible past of MDS…I will prob have to have some chemo to hold me for my SCT being my 2nd 10/10 donor was “deferred”. I was set up to go in on the 5th…then the 19th..now on hold again. When they treated you with chemo in Jan after your induction…were they treating you for AML or MDS?..just kinda confuses me. Have any idea of what they will prob give me to hold me?? Talk later. I am expecting a call from home doc …supposedly he talked with Doc from University of MI yesterday…we will see
PamMarch 8, 2005 at 7:16 pm #4524SuzanneMember
Pam, I don’t know what they might do to “hold you”.I did try a drug trial for MDS that did not help however they did not do that until they were sure my sibling did not match for a transplant. They did not give me chemo until I had AML. defined I believe as 20% or more blasts in the marrow. Mine were 75%. I have not had any “displastiic” changes since I went into remission for both the MDS and the AML.No sign of either disease and my counts have stayed level and acceptable. People who have had or are waiting for a transplant shoud be able to tell you more but i have a feeling that they try to limit the chemo used if a transplant is in the picture. The Induction and consolidation sound slightly different then I hear about for a transplant. I had three drugs for induction, Ara-c, Etoposide, and Daunorubicin. They told me the consolidation was pretty much to get any bad cells that the ist treatment missed and might be hiding-that statistics showed you had a better chance for a longer remision with the two treatments. The consolidation was Ara-c and Daunorubicin-no Etoposide. When my blasts were as low as yours all they did was monitor me fairly closely.my white cells were the most effected by
MDS. I never felt bad or had any infections or symptoms except minor things during the time my counts were down from chemo. My other counts were below average but not in a place to cause problems. I hope it works out that you have plenty of time to wait for the right donor~March 8, 2005 at 7:45 pm #4525SuzanneMember
Pam, I don’t want to mislead you. Looking at my old calendars it looks like I was transfusion dependent from April 03 until I recovered from chemo in feb. 04.March 8, 2005 at 9:03 pm #4526PamyRnMember
Hey Suzanne thx for writing me back. I was only diagnosed 4 mths ago. Became transfusion dependent for for two months. When I first went into AML Jan 05(blasts were 26%) I recieved a “round” of chemo. It was Ara-c and Doxorubicin (red stuff)…I broke out in a rash on day 6. NOw they dont think I can take Ara-c for my stem cell conditioning…Now that you mention it I think they have to be real careful what they give my as it would interfere with the upcoming transplant. Will see doc tomorrow and see what they all have planned for me. I feel real good. My counts have been up in normal range since 2/9. Thank you God. I almost feel normal! LOL
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