Has anyone ever been in blast crisis and survived without having a stem cell transplant? My dad was diagnosed with CML July of 2015 and at initial diagnosis he was in chronic phase. He stayed in chronic phase on Gleevec for a few months, however in just a few weeks between getting his blood tested he advanced to blast crisis (diagnosed early December). He has now been on Sprycel 140mg since - aside from two weeks when he was taken off Sprycel because his counts were so low (this was very scary and seemed unorthadox - WBCs increased during this time from 4,000 on a Thursday to 34,000 the following Tuesday.
He has side effects from the 140mg Sprycel that I wouldn't really call manageable. His latest counts were WBCs of 4.7, RBCs of 1.95, Hemogloblin of 6.7, platelets of 17, and absolute neutrophils of 0.4.
The goal of treatment is to get him in second chronic phase and hopefully do a bone marrow transplant. He has two brothers and we should hear sometime next week if they are a match or not.
From all of the reading I have done, it looks like there is little chance for him to stay on Sprycel for a longer amount of time than a few months, even though it is "working" because the disease is so unstable it is likely to mutate and become even more aggressive without a BMT.
I guess I am wondering if anyone has any feedback about living through blast crisis CML and how they were treated. Bone marrow transplant? Continuation of TKIs? Clinical trials?
Anyone have any information on the clinical trial NCT02319369 that relates to DS-3032b? I don't know much about it, however know that it is a Phase I study and those in blast crisis are potentially candidates (I contacted the MD Anderson Cancer Center about the trial).
As of the last bone marrow biopsy my dad had 28% blast cells. I know that's not good, but after doing some reading it looks like his chances might be okay since this used to be classified as Accelerated Phase.
Any words of wisdom are much appreciated. We thought we had won "the cancer lottery" when he was diagnosed because there were so many revolutionary TKIs available - he could deal with side effects so long as we had years and not months with him. As a family our world came crashing down when in such a short amount of time he moved into blast crisis.
I am learning to take it one day at a time and try to control what I can control!