I’ve not been here for a very long time but things have changed dramatically.

My partner who was diagnosed with CMML in spring 2024, didn’t respond to the Azacitidine for 7 months, started getting increased platelet counts increasing to normal levels after a further 3 or 4 months, these remain normal throughout the remainder of 2025. Unfortunately his platelet count started dropping earlier this year and the haematologist requested another bone marrow biopsy. They have said that they couldn’t see any CMML cells but found Mast Cells further investigation has now confirmed a diagnosis of the aforementioned disease, it would appear that the CMML has mutated.

This diagnosis is as rare as hens teeth! And they have never treated it before. I have attempted to research it myself but theres very little on the subject available online and what there is isn’t great reading and I’m feeling frightened for him.