Last night for the first time in 2 years and 4 months I did not take my Gleevec pill. I estimate I took about 850 of them! We've had a love hate relationship, they've kept me alive and kicked my CML's a**, but they have taken a toll on me physically. I was a fast responder for Gleevec, essentially CMR within a year, and then bouncing in and out of detectable. For a long time I felt I would just live with the side effects, I learned to deal with the fatigue, and I could tolerate the pain, I never had any real stomach issues, so I considered myself pretty lucky - puffy eyes and pale skin not withstanding, I was certainly not complaining about that. Over the last year however I have started to develop some other problems, many seem to be muscle related. I have lost muscle mass, I am considerably weaker than I was two years ago and keep in mind I am not even 40 yet. the muscle problems have continued to progress getting worse and worse over time. I have trouble standing up straight due to severe muscle spasm in my lower back that are constant. I can't reach for a box of cereal on the top shelf because any stretching of my muscles results in an instant Charlie horse. Sometimes rolling over in bed can cause a problem. For a while I thought these things would just take longer to heal but now I see they are not really healing. So with a slight bit of enthusiasm and an overwhelming amount of nervousness I made the decision to switch drugs. I am going to Sprycel. I am a bit frustrated that my doctor would not work with me on dosage, I think 100mg is too much for someone already in CMR, but this is what she feels is best and she hasn't steered me wrong yet. I suspect I will just have to take the hit and then come what may we can discuss reducing the dosage, if after a while we can't see eye to eye, then I guess it will be time to move on. Relationships are like that, many are not meant to last forever. But for today I will hope for the best. I am going to enjoy the next 10 days without any TKI drugs as I head out to take my family to Disney. A much needed vacation that had to be rescheduled due to the passing of my father in law. Coming off a week with no power, post hurricane, I really need this vacation. I begin Sprycel the day I get back. I am expecting the rough week or two at first and then hoping things will begin to improve. I know I will never feel the way I used to but hopefully I can regain some of my quality of life and alleviate some of these issues. I am so nervous I am bringing on something worse, but really hoping this will be better. I've heard people say when they switched from Gleevec to another TKI that it was like getting their life back. Hopefully I can recapture some of the way I used to feel while still managing to keep CML at bay. Nervous about even being off the drug for a short period of time, but I just know my body needs a break. Maybe I'll get lucky and I won't sun burn so easily while I am off it:)
Here's to my new beginning!
I hope you are all doing well, that any of you who were in the path of the storm are faring ok and that we all continue to find the best way for each of us to deal with and live with this disease until hopefully some day maybe we can find a cure.
All the best to each of you......