Hi! I’m Don. I was diagnosed with Chronic Lymphocytic Leukemia (aka CLL) in September of 2011. Since then, we’ve done lots of bloodwork and a bone marrow biopsy in something known in clinical circles as “watch and worry”. We’ve steadily and patiently watched my white blood cell counts rise and my red blood cell & platelet counts fall.My lymph nodes have gotten pretty big and in general, I am fatigued and don’t feel really good most days.
Fast forward to August, 2013.
This week, my platelet count had fallen to 74000 so my oncologist Dr Flinn and I both agreed that it was time to begin treatment. I have a genetic mutation called short arm chromosone 17p deletion. FCR (Fludarabine + Cyclophosphamide + Rituxan) is the standard chemotherapy regimen for CLL these days but it’s not known to be all that effective in terms of achieving durable remissions for those of us in the 17p club. Without a bone marrow/stem cell transplant, this is not generally considered a curable cancer and managing it over the long term is what we’ll have to do. We looked at some new therapy options and I believe we found a good fit. It’s all unfolding really fast and in the last few days, I’ve enrolled in a clinical trial for a new B cell receptor pathway signalling inhibitor currently called ipi-145. I will begin treatment next week. We’re gonna drop-kick this cancer with zero mercy! This is where the story begins.