On 9/16 I posted a happy topic that I had reached MMR. My number was 0.085 and as far as I know the .0 was what made it so good. That day they took more blood and sent it out for another bcr/abl test. Today I went to my onc and got the result it was 0.225 and he is once again talking about increasing me back up to 100mg of Sprycel. The last time I was on 100mg of Sprycel I ended up in the hospital 3 times for a total of 9 days due to PE and CHF. I went through lasix, bumex, and now 60mg per day of torsemide to keep the fluid in my chest in check.
After those 3 hospital stays he had me taking 50mg and 70mg of sprycel every other day but had told me to just start taking the 70s. I being a smart a** , decided to keep taking the 50/70 as I was feeling very good. They sent out another blood sample for bcr/abl from my blood draw today and I will see him again in 1 month to see where we are then (or really where we are now as blood was drawn today).
Just as I had felt so great after getting the MMR result now I feel totally depressed about this new result. How bad is a jump from 0.085 to 0.225? Should I expect the next one to be even higher? I can't help but think I screwed things up by not doing what he told me to do and instead kept taking the 50/70 and now must pay for my mistake.
I am sorry for venting here but lots of things have gone wrong recently. My mother died at the end of last week and we buried her on Saturday. She was 81 but I was still not really prepared to lose her. My wifes doctors just found a very small islet tumor on her pancreas so we went up to Brigham and Womens hospital in Boston ( where I had my cardiac by-pass done). The specialist said the tumor is only 7mm in size so we will watch it and if it grows to from 1 to 2 cm we will have to consider a surgical intervention. He did say he does not think it is cancerous though.
Thank you all for being here.