Hey folks... I read these boards often but I do not post much.... I but I felt I needed to share... I was diagnosed with cml may 0f 2002. I started on gleevec and in six months was negative by my six month marrow. Gleevec although it out me in ocr was horrible to be and I had continued nausea, vomiting and weight loss. I stopped gleevec in 06/2007. I wa on no drugs untill 10/2007 when my cml recurred. I started sprycel in oct 2007 but developed serve headaches. I once again reached cyctogenic remission but had to have the dose of sprycel reduced and the it was stopped once my cml reoccured in sept of 2008. I then started tasginia in Oct 2008 but I never responded to it and it was discovered that I had a bcr-abl mutation with a 35 nucleotide insertion between exons 8 and 9. Because I failed to respond to tasginia I was placed back on sprycel in june of 2009 by sept I was showing negative by both pcr and fish. I have since lost that response and I am once again showing positive... all though a very low number..... I am not at a crossroads... sprycel is holding my cml at bay for now but the thought and fear is we don't know for how long.
I am on 70mg of sprycel and the side effects have been really difficult to deal with. They are suggesting because of my history that I proceed to transplant given that I am flucating in and out of pcr, the side effects that I have had with these drugs and that i have a mutation that no one knows anything about.
I do have a 10/10 donor but I am unsure of what to do. I am only 38 years old... I work full time, I am single. I don't know whether to pursue transplant or wait for a new drug to come down the pipeline...
Sorry for the long post but I needed to vent... I am scared and unsure which path to take... Also does anyone know or heard anything about this mutation that I have... Help
