I am newly diagnosed with CML on 11/16 of this year and new to this board. I've been reading posts for a while and am finally joining in so forgive me if I'm not following any protocol quite right.
I started at WBC of 191,000 and the local hematologist helped bring it down using hydrea originally and pherisis for three days and then started on 400mg of Gleevec. My blast count was 2% and my PCR was 0.940. My WBC levels continued to drop nicely until they fell too low and then they paused my Gleevec when my WBC was 2.1. The next week my WBC dropped to 1.1 so the Gleevec pause continued. I was nervous about my counts being so low and getting an infection and also about pausing my chemo. In talking with the doctor he said I also had an additional chromosome split and he also said he was thinking of moving me to Sprycel. I got a little nervous after hearing about the split and made an appointment at the Mayo clinic in MN for a second opinion which is close to where I live. I got in right away and saw a hematologist this past Monday. He said I have 9;22;12 all combined together and maybe 2 participating but this is not clear. He said there is not much known about this combination to tell how the addition of 12 will impact my response and they haven't had a case with this combination at Mayo. He wants to keep me on Gleevec but at 300mg instead of switching to Sprycel. He said this is still a theraputic dose and thinks I may just be having a hard time metabolizing it. He is keeping me off pills this week still (this is my 3rd week) and will start next week once my WBCs are good and strong. My counts were up to WBC of 2.5 this past Monday and everything else was looking good. If my counts drop again he will switch me to Sprycel right away.
I'm a bit nervous about being off my pills for this long and also wishing I knew more about my complex variation. Also wondering if having a split like this means I should get an additional opinion from one of the other cancer centers since Mayo hasn't seen it? Anyone with any words of wisdom for a new guy? Thanks Glenn