I sometimes get very down about having CML - I mean nobody wants this, but I remember telling my wife while we were waiting for my final diagnosis that if I have to have leukemia, CML sounded like the best "choice." Of course, at that point all I knew about TKI's were that they were highly likely to control CML for a long time, that I would have to take it for the rest of my life and that there was about a 30 - 40% chance I might have some side effects (based on Tasigna prescribing information). Only the first of these assumptions turned out to be correct. I started taking Tasinga 300 mg 2x/day and everything was fine for the first month or so and then all hell broke loose, including 9 confirmed squamous cell skin cancers and approximately 40 other pre-cancerous skin lesions over a 4 month period, heart arythmia which was debilitating at times even thought it turned out to be benign PAC's, swollen salivary gland incidents about every 2 - 3 weeks for about 6 months followed by mutliple mouth ulcers, digestive system problems, itchy scalp, periodic insomnia and dry mouth/eyes. But through all this, my PCR was plummeting. The medicine with which we all have such a love/hate relationship was doing it's job on the biggest foe of all - my CML.
One day during my dark days period (as I call it), I decided to write down my gratitude list, something I learned 20 years ago in AA. It helped and it still helps today even though most of my side effects have resolved with dose reduction. A couple of days ago, my wife forwarded this to me:
https://en.stories.n...-hours-earlier/
Take the time to read Holly's post. It is powerful, sad and uplifting all at once, and most importantly, hits me right between the eyes with the message that I continually need to hear - be grateful for what I have and cherish each day I can get up and lead a pretty normal life. I am also incredibly grateful to have this support group. You guys along with my incredible wife and amazing dog are what got me through the dark days period and I will be eternally grateful for all of you.
