I was on a lowered dose of Sprycel for more than 4 years but had to stop due to suppressed counts and bleeding issues. I've been PCRu for over a year now. A few weeks ago, I switched to Tasigna. I did not get a baseline EKG, but had one within one week of starting treatment which was normal and had another one about a week later. I have one scheduled at the one month mark, too. Even though these have been normal, am I screwed since we don't have a baseline?
My counts have been better than they've been since long before my diagnosis of CML for a change. I feel better mentally and energy wise on Tasigna than I did on Sprycel and am only having bone pain and a rash from the Tasigna right now. Nothing all that major. Not fun side effects, but better than Sprycel for me.
However, I am a getting a little anxious about Long QT syndrome that is a risk that can accompany Tasigna. I read about the syndrome and am now wondering if I should be taking any other steps to prevent Long QT syndrome, like avoiding any other activities or medications. My doctor is monitoring me with ECGs, but will that actually detect if there is a problem if it's only one brief moment in time? Does long QT syndrome show up on ECGs before it's an actual problem? II am 32 years old with small kids and Long QT syndrome is freaking me out now that I've read about it. Anyone know anything more specific about whether ECGs actually give some warning of people who may develop it and if it's developed, is it reversible with stopping Tasigna? Is there any research someone has found about the trends discovered in the people who have developed Long QT syndrome or died suddenly on Tasigna? Thanks!
