Hello all, diagnosed with CML July 2017. Unfortunately was misdiagnosed with a platelet problem (essential thrombocythosis) 7 years ago which upon further testing of old bone marrow shows I've had cml since June 2011. I had been on hydroxyeurea since 2011 for this wrong diagnosis. Since July last year I was on and off a low dose of imatinib/gleevec for 2 months. It sent my platelets and wbc crashing so they stopped treatment. I started on nilotinib/tasigna since October again on and off in total 6 weeks at 300mg/ then 150mg daily. Again it sent my wbc and platelets crasing despite also taking platelet making drugs. Ended up in hospital for 5 weeks over Christmas, neutrophenic and Was diagnosed with acute aortic vasculitis. Restarted nilotinib alternate days at 150mg, again I'm crashing.
Consultant wants to break treatment till my blood count comes back up and then start me on bosutinib.
I am dreading another tki not working. At the end of my tether.. Any advice or people with same problems?