Just a quick note talked to Dr. P today, and he and those he consulted didn't think that putting me on higher dosage of Sprycel or moving me over to Tasignia would get the desired effects. They just think it would be lowering my blood count numbers, and may not be a long term sustainable response.
They are running another mutation test, which may show us if it's mutated, or something else going on. We are in a wait and see until we get that back. I did schedule some time to go down to OSHU to meet with someone regarding the Ariad trial, and see if my profile is a good fit for the trial drug. It wasn't that long ago that Gleevec, Sprycel, Tasignia were all trial drugs, and they have done mirables for 1000's of people. So a 3rd generation may be worth exploring. They are in a phase 1 study, determining the right dosage. Tyler is going with me, we're heading down to Portland on Tuesday.
Speaking of Tyler, I feel blessed to have a friend like him. I truely feel blessed with all of our friends and our families, but having Tyler in our life has allowed me to turn to him when I need a friend to lean on, to talk CML about, and just about anything else in life. Thank you Tyler !
Meanwhile we're getting the process started on getting my sisters HLA typed, since I have to face it, a transplant is a good possibility as my treatment of choice. I still think that we're in a little shell shock that our list of options is shrinking.....