north carolina

i'm not completely certain exactly how to write this blog. so much to include, no idea how to tell the story. at any rate, here goes....

I had a great time in NC to begin with. we visited yarn shops and fabric stores and of course a hematologist. 

dr boles is young to begin with. he's one of those lucky people who looks younger than they really are in addition, so it was interesting. he looked about 23. maybe. but when he started talking all my misgivings went out the window. he was very knowledgeable. he explained more about my disease in the first 20 minutes than dr robinson has told me in 4.5 months. some was information i had already gleaned from the internet. other information was new. 

the good news? i'm doing well. i have reached the first of three stages of "remission/response". it is called  Complete Hematologic Remission. The goal is to reach this stage upon 3 months on Gleevec. what it means is that my spleen has returned to normal size and all my blood counts have "normalized".  I'm not sure i understand how the thrombocytopenia of December affects this, but currently my counts are completely normal. 

there are two other stages. Complete Cytogenetic Remission and  Major Molecular Remission. These two further stages mark further returns to normal. The second level,  CCyR, is hoped to be seen at 12 months, and third, MMR, should hopefully occur around 18 months. 

what's important to consider is this: the current belief is that the faster one reaches these milestones, the better outcomes one has. the result that is aimed for is Progression Free Survival. (ie: the medication does it's work, and not only is one still alive after 5 or 10 or 70 years, but the disease has not progressed from chronic stage). Currently this is what can be done, the medication keeps CML in a constant chronic stage--ie: no significant symptoms. and right now, i'm on the right road....

from my perspective the only problem is quality of life at this point. i'm healthy, in terms of CML. i am not seeing any of the various symptoms of CML and indeed i'm right on target with treatment. the only question then is all the side effects from the gleevec. 

what else did dr boles say? he said that if i were his patient (i'll address this later) he'd like to see me on one of the second generation TKIs. this is because they work more quickly, and the best predictor of progression-free survival is how quickly MMR is reached. we'll need to work on that. 

this is most of what was discussion on monday.... i'll post more about the meeting on friday later....