I knew all that high school Latin would someday pay off!
Thought I would provide an update on my participation in the "LAST" clinical trial that I joined in the spring of this year. By the way, LAST stands for Life After Stopping TKI's.
Background: diagnosed in July of 2011. Sprycel August 2011 onward. Reached and maintained PCRU in about nine months. Stopped taking Sprycel (in the trial) the beginning of June 2015. Have been tested monthly since then and just completed my fifth month of treatment free remission with my fifth PCRU result. Really starting to feel like my new "no Sprycel" life is going to be permanent.
The main reason I'm writing this is to share my Sprycel experience with regard to fluid retention and breathing issues.
On Sprycel I gained 40 pounds - and on my frame that is a LOT. Lugging around the extra weight caused other problems. One problem I had for a long time was shortness of breath (and fatigue). I blamed the breathing problem on the extra weight. Within about a week of stopping the Sprycel the shortness of breath COMPLETELY disappeared and has not returned in five months. Right now I have NO DOUBT that because of some Sprycel fluid-related dynamic in my body my heart/lung function was being severely compromised. I never would have figured this out if I did not join the 'quit' trial.
Because I blamed the short-windedness on the weight I did not mention this to my onc. Hindsight now tells me I should have. My advice to everyone is that if you have heart or lung related symptomology and you are taking a TKI, do yourself a favor and report it to your doc. And if you are not 100% confident in his/her course of treatment get another opinion. Heart and lung stuff is serious business.
Please don't interpret this post as Sprycel bashing. Quite the opposite - obvoiusly Sprycel did a tredendous job controlling my CML. I just wanted to point out a risk I was blind to while taking the drug, (mainly because I 'played doctor' and diagnosed my short windedness myself without reporting it to my doc).
If anyone has any questions about quitting or about the inner-workings of the trial feel free to post here or send a private message.