Hi Bailie, decided to post my reply on this old thread so as not to distract.
No mutations showed leading up to first transplant, blasts had reached the margin of 20%, difference between MDS and AML in 2010. I believe his original blasts were in the 10%, after several Dacogen treatments his blasts increased to 20%.
In 2010 they did a T-cell depleted transplant to avoid GVHD, but the EB virus manifested itself about three and a half months after transplant and he underwent several treatments of Rituximab. After that his IGG levels never really climbed on their own and he needed to be supported by IVIG treatments every few months. A little over three years later his WBC dropped about 3 points (8's to 5's) then another long overdue blood test revealed a WBC in the 2's and peripheral blasts just under 10, they called us back as we were just leaving the hospital to give us the news and did a BMB that day. Results around 30% blasts in the marrow and donor status had changed significantly. Before his second transplant they detected the FLT3 mutation, although he achieved remission again with the 7+3 induction.
When I asked if this mutation was detected the first time they said no, I also asked if there were different "levels" of the mutation and I came away thinking it was a lower level and that tests have become more exact. I did not press the question any further, first I figured that I would not understand the science and second because as caregiver I did not want to add to the stress of my patient
I do feel that if this relapse had been caught earlier they might have been able to a DLI, or maybe not?, but I do believe we need to be our own advocates or advocate for a loved one.
Sorry for the late reply and hope you are doing well! This is a challenging disease, hopefully they will continue to make significant strides in the not too distant future.