No idea either what "extended" means... but my husband also has MDS 5q deletion, diagnosed late 2017.

We are told by his hematologist and oncologist that 5q is low risk for developing AML, even though one Flow Cytometry revealed AML markers. The oncologist had us talk to his end of life specialist on the day he told us about the AML markers. That was a year ago, and the next Flow Cytometry had fewer markers.

Also, CBCs on the same day at different blood draws show some differences that appear to be more than reading errors. We've learned to follow everything closely from day to day.

Wondering if your hematologist also reports that 5q is low risk for AML.