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MDS Myelodysplastic syndromes

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Old Sat May 19, 2018, 01:46 PM
Barb Barb is offline
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Blast Count

I am almost finished work my 4th cycle of Dacogen. The plan has been to do another BMB June 5 to ensure I'm in remission then do a transplant in July. My periperal blood has been free of blasts since March.

I am currently getting labs twice a week. Recently some PB blasts have been showing up. At first it was 0.2, so we hoped it was a healthy marrow trying to recover from a very low white count. The next lab, a few days later showed 0 blasts. That seemed good. Next lab showed 2% blasts, then it dropped back to 0. My last lab the PB blast count was up to 5%. I am obviously concerned.

I can't figure out why every other lab is 0. Mondays I have 0 blasts, and Thursdays I have a number that is climbing. Anyone experience bouncing blast counts like this? I'm hoping it doesn't mean the Dacogen isn't working and I'm not going into remission. But I'm afraid that is what it means.
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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Old Mon May 21, 2018, 11:34 PM
DanL DanL is offline
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I never used dacogen, but did notice that blast counts varied greatly throughout the cycle of treatment for vidaza when I was on it.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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Old Tue May 22, 2018, 10:02 AM
Barb Barb is offline
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Thanks Dan. My last count was 2.8% My CNP is concerned because they expected me to be in remission at this point. Emotionally, I'm preparing to die. I can't stand this roller coaster. In the beginning I expected to die because I have what is apparently the worst kind of Leukemia to have. Then there was hope with a transplant. Now it looks like I may not make that. I'm having bone pain again which I haven't had since the beginning before chemo. I'm just feeling really down today.
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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  #4  
Old Tue May 22, 2018, 11:12 AM
Sally C Sally C is offline
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Dear Barb,
I'm so sorry you're having a bad day. I can't do much but am sending (((hugs))) your way. You are a brave and courageous soul. I wish you well.
All the best,
Sally
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