Hi Birgitta
Not sure I ever saw that paper--thanks!
But I still get confused on what a "response" is....that paper refers to a "first response"...I am still transfusion dependent, but otherwise seem ok. Feel normal enough to live a regular, if tethered life....most people in and out of the medical field say they would never guess that I was sick by looking at me...
Just when my #'s start to rise, it's back to treatment...does the bone marrow get tired of trying to "bounce back" and decide to quit altogether?
When I took a break for February, I still needed platelet transfusions along the way...nothing seemed to have improved...
Curious to what you and others think....
By the way, do you ever sleep?
