It seems to me that over the almost 8 years I've been posting on here and since Sprycel has become a TKI used by many more of us, I've read posts from some of us complaining of shortness of breath with no known cause.
About 2.5 years in I developed a small pleural effusion. It was so small, just a blunting of the tip of my right lung, that I didn't stop Sprycel. A couple of weeks later that was shown to be a mistake. The effusion had become much larger. Sprycel was withheld and we tried diuretics with no affect and then steroids which did seem to help. I appeared to have pleurisy at the same time as it was very painful. After a thoracentesis and almost 2.5 months it resolved and I have been on 50 mg. of Sprycel in the 5 years since. A couple of times I'd felt shortness of breath but it never developed into anything.
Last March I developed a shortness of breath that resolved when I stopped Sprycel for a couple of days. Late August it developed again just before I went on vacation. I had a precautionary x-ray which was clear. I decided to stop Sprycel again for 3 days and again experienced temporary relief, but only for about 10 days. I've had 3 totally normal echos and I will be going for a 4th mid October, focusing on getting a estimate of pulmonary arterial pressure. Fortunately, my symptoms don't seem to warrant a more invasive test. If nothing shows up then I will look at cardio and pulmonary function.
It isn't like I'm gasping for breath, just enough to be worrisome and, of course, constantly focusing on my breathing doesn't improve things.
I could switch to Tasigna, but I really don't want to, I'd prefer to reduce my dosage and see if that helps while keeping my PCR at MMR or below. I'm currently bouncing in and out of negative. I have 3 months of Sprycel built up to help with costs when I switch to Medicare and it would really piss me off not to be able to use them!
I would like to hear of other's experiences with dyspnea and other thoughts about how you would approach this.
Hope every one is well and emotionally healthy with this damn disease. While I can't say the treatment is worse than the disease I can say with certainty that for some of us it isn't a walk in the park!!
P.S. Forgot to add, my O2 sat this past Wednesday was 98.