Just checking in. It will be 3 years since my diagnosis on March 5th of this year. Happy Anniversary! I must say that my life is as normal as it will ever be. I am working my normal job, normal hours and I am also active in my daughters soccer coaching, and taking her to practices 5-6 days a week. I am also playing soccer 1 night a week as well in a local coed group.
As far as my disease goes, I did have a "positive" FISH test last summer but it was still considered negative for the mutation (1 of 300). I was retested and it cam back 0. I take my 400mg Gleevec daily. I have been playing around with when I take it to see home it impacts my side-effects. They are minimal and are typical ones seen with Gleevec. GI issues as well as minor fatigue, minor nausea and edema. Nothing I can't manage. My blood counts have been pretty stable. My Eos % have been up as of late but I have also been sick this winter and we do have a new cat in the family, so allergies and sickness can effect those levels. The Eos levels have been in the 7-8% level as of late which is high but since my FISH tests have been negative the last 2 times, they chalk it up to the allergies and sickness.
It still can be frustrating at times as there is not a lot of access to free information regarding my disease, treatment and long term prognosis. I've always used CML as my basis knowing that my mutation occurs further down the blood chain which makes it more susceptible to inhibitors such as Gleevec and others. I am my own advocate for my disease and i do all that I can to find information on it so that I may continue to provide help/hope for others with what I have if they may ever stumble into this Forum. One thing I do love is to talk about my disease and how amazing it has been with the help of drugs like Gleevec.
Thanks to all and best wishes to you.