About 3 weeks ago I was walking more quickly than usual, and I started experiencing shortness of breath and a cough. About 2 weeks ago I started to worry about PE or PAH, so I stopped taking Sprycel (40mg daily). A chest x-ray indicated no PE. A few days ago I had an echocardiogram, and the pulmonologist reported
"Mildly abnormal. Heart muscle is somewhat stiff(diastolic dysfunction). Moderate valvular disease(mitral). Mild elevation in pulmonary artery pressures:mild pulmonary hypertension On the elevated pulmonary pressures may be associated with dasatinib(<5% of patients). All relatively mild findings, but you may benefit from seeing a cardiologist"
The pulmonologist prescribed an inhaler to be used as needed. I haven't used it much. The shortness of breath is much better(though I haven't been walking very quickly)
I've been planning to cut down my Sprycel dose to alternating days of 40 and 20, and then to 20mg daily. My onc was not happy with my cutting down to 40mg daily, and when I mentioned my further plans she responded, "You're doing this on your own." When I emailed her on Friday afternoon to tell her of the Echo results and ask her opinion on continuing with Sprycel, her assistant replied that she needed to review the dasatinib data and would let me know.
I haven't heard back from the onc yet. I would like to continue with my plan to gradually cut back the Sprycel dosage. I would feel much more comfortable doing that, but I'm concerned that if I do have PAH, I could be harming myself by continuing. The pulmonologist recommended discussing the situation with my onc, though he said
"The pulmonary hypertension is relatively mild and if your hematologist would like to continue it, we could repeat an echo in 6 months. The 'break' you refer to will probably not make much of a difference pulmonary hypertension usually results from slow and chronic changes to blood vessels and to the right sided chambers of the heart. "
I'm confused about what do because I've read that a diagnosis of PAH requires stopping Sprycel immediately, but I'm not sure what "relatively mild" means. I've also read that an echo result is not conclusive evidence.
As always, thanks to all for your advice. I've learned so much from our board. I don't know where I would have been without it.