I have been following and occasionally writing replies but have not introduced myself. This is a fantastic very supportive group and I am amazed but the helpful and very knowledgeable contributions my so many members.
I was diagnosed in 2014 with a routine blood test at the age of 49 by my PCP. Testing showed a chromosome 13 deletion and that I was muted the same “good markers” my sister in law had. She was on watch and wait for 30 years! In fortunately I developed progressive thrombocytopenia and anemia as well as severe fatigue. I used to do long distance running until beginning 2018 and have a very demanding job but was barely able to climb 2 flights of stairs and slept more than 12 hours a day on the weekends. I am treated at Dana Faber in Boston and was recommended FCR which has a potential cure rate of 50% with my markers. After several discussion with
my hematologist I decided for the phase II trial AVO with acalabrutinib venetoclax and obinutuzemab. I am now cycle 6 with some bumps on the road. Venetoclax load had to be stopped for a week with high LDH phosphate as well as severe thrombocytopenia down to 18k which did not respond to transfusion. Was loaded with high doses of steroids and they are now back to 78k :). Doing well at this point except for occasional black and blue spots on my skin. I was worried about secondary MDS and AML with FCR in the light that I have a 14 year old daughter. I am grateful for the care I am getting and being able to talk to my hematologist who was open for me to start the trial despite her initial recommendation for FCR. The team is truly fantastic and so caring. But did I make the right decision since there is no long term data available on this combination?