Thread: MDS Questions
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  #14  
Old Fri Mar 9, 2018, 05:34 PM
Barb Barb is offline
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Join Date: Jan 2018
Location: Columbus, Ohio
Posts: 28
Leigh, I'm so grateful you knew that was the same as 5q-. I thought it was but I didn't want to speak out until I was sure. Rich, 5q- by itself is indeed a good thing. If you are going to have MDS, it's the kind to have. The concern comes when 5q is combined with other genetic mutations. Suddenly, that simple and relatively benign 5q can be associated with a poor prognosis.

That's what happened to me. I went from 5q-syndrome, stable for 12 years to picking up additional mutations (unusual for 5q syndrome), and I now have a high risk, poor prognosis acute leukemia. A second opinion would be wise for you. I'm glad Leigh can help you out.

Blessings
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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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