on friday i drove to Minneapolis to go to a seminar called "living well with CML". on saturday i got lots of new information about my disease. most important was this: i need a new oncologist.
i've had 2 bcr-abl tests that with what dr. robinson classified as not as good results, that with lots more information, i can identify as truly unacceptable results. basically, in April, my bcr-abl results (international scale) were 2.8% (this number was up from the prior test), then in July the results went down a bit to about 1.9%, but in Oct. the number is back up to about 3.4%. By 1 year the docs want to see numbers in the .1 range, since that is complete cytogenic response (on the international scale). basically my impression from the docs and novartis reps as well as pretty much everyone else there, was that this up and down is really not ok. indeed, my numbers for this test should be quite a lot lower. additionally, for the first year, we should be seeing nothing but downward movement, and certainly not two tests that were 'up'. and seeing a test that is up above the number from 6 months ago makes me think that the slight downward movement in July may have been the "mistake" (ie: margin of error issue). given the other two numbers, a movement up seems more likely, than that the two tests are incorrect.
this in addition to lots of conversation about what dr robinson acts like, etc. leads me to the i need a new oncologist decision. luckily, i also made some new helpful friends at the seminar, who are going to be helping me find some options.
