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Guest LLS Blogger Andra

 

I was diagnosed with CML (Philadelphia +) in September of 2011. It came as a huge shock, as I’ve really never been sick in my life, and I was only 26 years old. Once the dust settled and I realized I could live a full life with the help of oral medication, the shock dissolved into quiet confidence. I had cancer, but I was going to get better by taking two pills twice a day! This is going to be a piece of cake! I am going to be just fine! Exclamation points!

 

Medication adherence was a term I heard my doctor mention, but I didn’t think I would have a problem with it. They are just pills, right? Wrong. The medication I am on, nilotinib, or Tasigna®, must be taken when the stomach is completely empty; it may only be taken one hour before or two hours after eating. Being a stay at home mother to my then-17-month-old son did not lend itself to perfect medication adherence. Young children, as much as it pains most parents to admit, do not always do everything on a schedule. There were many mornings that I had to fly out of bed to pick up the baby who is hollering for breakfast and before I knew it I had a piece of toast hanging out of my mouth while I’m dodging yogurt catapults. There goes the morning dose; I just have to remember to take it in two hours.  But then it’s time to go to the park for a playdate and to eat lunch, and Oh no, I just ate too much to take my pills AGAIN and now I have to push my dose back AGAIN. And on and on it goes.

 

I realized that I was missing more doses than I felt comfortable with, so I tried a medication reminder system called “Glowcap”. It is basically an alarm-like pill bottle cap (with a corresponding night light you can plug in anywhere in the house as a visual reminder) that you can program to go off at the time you need to take your medication. It was a great idea, but since my medication is more dependent on the contents of my stomach than the time of day, the alarm became more of a nuisance than a tool in my situation. I was getting frustrated. Why is remembering to take some pills so hard, especially when they are what is supposed to be making me better? I finally had to own up to the fact that some of the side effects of the drug (fatigue, bone and joint pain, nausea) were affecting me to the point that I didn’t WANT to take the pills. I didn’t want to constantly feel ill or be in pain that I didn’t think I would feel until I was much older. By talking with my doctor and getting the side effects under control, I found myself forgetting my doses less and less. Imagine that.

 

It was around this time that I was lucky enough to get a smartphone, which came equipped with very handy alarm and stopwatch features*. When I was finished eating dinner, I began to set the timer on my phone to ring in 2 hours with the message “TAKE YOUR PILLS CRAZY!” flashing across the screen. I asked my husband, who wakes up early for work, to wake me up also so I could take my morning dose and go back to sleep, so as to not have to worry about accepting the bites of food my son loved to offer me.

 

Even with timers and reminders, sticky notes or string tied on a finger, skipping doses is a reality for people on lifelong medications. Nobody is perfect, and nobody expects you to be. If you miss a dose, don’t beat yourself up. Take the next one, and the one after that. And on and on it goes.

 

*LLS offers My CML Tracker, an online tool that allows you to set up daily email and/or text medication reminders and helps you keep track of appointments, questions for your doctor, medications, side effects, test results and notes. My CML Tracker is available for PCs, smart phones and tablets.

 

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If you have a story that you would like to share and post on our CML blog, please email cmlblog@lls.org with your name and a short description of your experience.

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