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#26
Fri Jun 12, 2015, 05:41 PM
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Dan, I just got back from my appointment. I was pretty apprehensive going into the appointment just because of the nature of this disease. My Dr. was feeling very well about the results of my BMB on last Monday and my blood counts are very good also. She said again (which I knew) how rare this combination of the Philadelphia chromosome (9;22) and AML. The Vidaza and Sprycel are doing exactly what they are suppose to do and considerably better than expected. My numbers "bottomed out" after first cycle. They were having me do blood tests twice a week and the numbers have been better almost every week. Platelets bottomed at 20 and are now at 272. Neutrophils are in the normal range and WBCs and RBCs are just barely below normal. My HGB is at 11.6 which is fine. From the biopsy, blasts are less than 5 percent with no circulating blasts and there is "No morphologic or immunophenotypic evidence of residual acute
myeloid leukemia". I will start my 3rd cycle of Vidaza on Monday. The goal is that the donor cells can work in this environment to suppress any attempt by the disease to reappear. It will be another week before we get the results of the cytogenetic analysis. The Dr. said if she had a resident working for her she would have him/her write me up as a case study. There is almost no information available on my situation because of how rare it is. My good friends always said I wasn't "normal", now they have medical evidence.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017. 
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#27
Sat Jun 13, 2015, 05:14 PM
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Hi Bailie - sorry you are having to deal with all this - but at least it sounds like you are responding well. Keep positive - you are in my thoughts and prayers.
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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#28
Sun Jun 14, 2015, 12:35 PM
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Paul, I am not having any problem dealing with this. There is no pain involved, only feeling tired toward the end of the day. It is a very interesting/unique situation. My life at this time is very close to normal even though the prognosis is "very poor". This definitely has my Drs. at the end of their algorithm charts. I start my 3rd round of Vidaza tomorrow.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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#29
Mon Jun 15, 2015, 10:14 AM
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I'm glad you're dealing with this well and more or less feeling well. Your positive attitude continues to inspire - all the best,
Paul
__________________
Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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