Wednesday, November 14, 2012

Prescriptions: Always Double Check Them; Be You OWN Self Advocate!

Once again, I am appalled by the lack of competency, in people. I do not know exactly “who” dropped the ball THIS time; I only know that once again, it was dropped. Many of you already know that I have Chronic Myelogenous Leukemia, and that it is treated with an extremely potent and expensive drug. This drug is called Dasatinib or Sprycel, and I receive it monthly, directly from the manufacturer.

For those of you with CML, you know the importance of taking your medication regularly and on time, as prescribed by your doctor. It is imperative for those of us with CML, to follow our regime exactly as our doctor has instructed us to do. Knowing that my survival is dependent upon doing my part, I listen carefully to what my doctor has to say, I ask questions about my treatment, and if I am ever unclear, I ask again. I also keep extremely accurate records of my own test results and treatment plan.

I keep myself educated on my cancer and I carefully follow my treatment plan. So, when my latest prescription arrived in the mail, I opened the box and checked the Sprycel bottle. The bottle that I received was 60, 100 mg tablets of Sprycel. Now, that would have been great, if my doctor had not changed my prescription three months ago, due to an increase in my Bcr-Abl gene.

My current dosage is 140 mg of Sprycel, not 100 mg. Now, I do not know whether or not “Murphy” is a part of your life, but I do know that he seems to run mine. Just once I would like to receive something that did not require a phone call, or an email, in order to assure that everyone is doing their job. You would think that as important as medication is, that you could count on the professionals to deliver your prescription accurately. It seems as though the correct prescription is on file, someone just screwed up!

Surprised? You should not be. Errors like this are made every single hour of every single day. As a patient, it is imperative that you check and double check everything and anything that the medical professional is giving you. You MUST be responsible for your own health and your own body. You CANNOT count on ANYONE to be 100% accurate 100% of the time. You must educate yourself and take part in your own care. It is your own life that is in jeopardy here; you live with yourself 24/7, your doctor sees you a minute amount of that time.

Take notes, know what you are taking, how much and how often. Learn how your medication is affecting your disease and ask questions. Take control; do not take anything for granted. I cringe at the thought of how many people would have simply not noticed that they were given an incorrect prescription. In my case, if I had blindly continued to take two tablets, as prescribed, I likely would have quickly become toxic. My prescription is for two 70 mg of Sprycel; I received 100 mg tablets, which would have meant, if I had not noticed, I would have been taking 200 mg of Sprycel a day, instead of 140 mg. In a weeks’ time, I would have consumed an excess of 420 mg of Sprycel; this could have been deadly.

Moral to my story; NEVER take your life, of your treatment for granted. Become involved when you are faced with any medical condition. If you are too ill to be your own advocate; appoint someone. Educate yourself; doctors, pharmacists, drug companies and all of the workers in between, are only human beings; they can and they do make mistakes.


  1. Love your card - One should go to all CMLers as part of their management package

    Hope you are well

  2. Ahhh, thanks! I'd be happy to send you ore, if you would like!

  3. Sometimes I get annoyed at my husband that he doesn't ask the Doctors the right questions and that he doesn't do enough research about my CML on the internet and then I think. I am the one with the disease not him and not anyone else in family. I need to take control of my own health and rely on myself to get more info, ask the right questions, and be on top of my diet and treatment. Unfortunately, no one will do it for us, unless we are minors. Also, I get really nervous when I have to call in the prescription that some number will be off and they won't find it in the system or will mail it too late, which is why as you said We are the only ones who have to check, and re-check, and then check again that everything is in order with the insurance claims, the co-pays, the dr appointments, the tests, etc. Having this disease is a full-time job in itself.

  4. My husband is extremely supportive and listens to my rants and rages, but I am definitely the one that does the research and asks the questions.

    Being informed gives us the power to live.

    There is a ton of info on this blog, maybe you should look back from the beginning!
    Please let me know if I can help you!


  5. Here are some questions to think about:


Bricks for the Brave!!