Runx1 MDS

[Krista Sie]

My dad was dx with high risk MDS, age 79. He has had one round of Dacogen. 3 weeks after that first treatment he required 3 transfusions in 5 days and was also experiencing a low grade fever at that time. In the last 2 weeks, he has developed shortness of breath. Any suggestions/info on this type of MDS, his shortness of breath and/or the use of dacogen?

[Donna]

RUNX1 is one of my mutations also. I have 3 more (ASXL1, TET2 and SRSF2). My understanding is that it is not a MDS type but a gene mutation that some people with MDS may have. There is talk of me starting Dacogen soon and I have been told that your counts will drop the first couple/few rounds and that you don’t really know if it working or not until a few rounds are completed. That is probably why he needed the transfusions. I am not transfusion dependent now but I was told I may have to go to my local hospital for platelets, red blood cells or whatever in between cycles if needed. I think the shortness of breath is sometimes low hemoglobin. WBC and platelets are my main problem. I wish your Dad well. I will be curious on how he does. Is RUNX1 his only mutation?
Donna

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