By Lisa Machado
It has been eight years since I found out that I had chronic myelogenous leukemia. My life changed forever that day. In the weeks and months that followed, I spent a whole lot of time wondering about the future: How long would I live? How would taking a targeted chemo drug affect my health in the long-term? Would the medication still work in five years? In10? But more pressing was the present. The CML soundtrack that played in my head was deafening. I was a mom with two babies, reeling from a cancer diagnosis, struggling with side effects. And each morning when I opened my eyes, the question was the same: How am I going to get through today?
So I guess I shouldn’t have been surprised last week when, as the Canadian CML Network wrapped up a webinar with CML specialist Dr. Wendy Lam, we noticed that almost all of the questions and comments we received before, during and after had to do with things such as exercise, vaccinations, and managing fatigue, among others. Questions about living.
The webcast, led by Dr. Lam, a hematologist and oncologist from the Burnaby Hospital Regional Cancer Centre in British Columbia, was a packed session that explored everything a person living with CML needs to know about CML – from the basics of CML, to what side effects can be expected on each medication. Dr. Lam also explored treatment-free remission and discussed recent studies that are showing some encouraging trends in terms of understanding why some people relapse, while others maintain their response off treatment.
It was a great synopsis of the medical side of CML. So when we began taking questions, I suppose I had certain expectations as to the type of questions that would be asked: updates on treatment options, the long-term implications of medications. And, of course, what no one really wants to ask, but everyone wonders about: “Am I going to die from CML?”
But there was none of that.
Instead there was an hour-and-a-half of really smart questions from people wanting to live their best lives despite CML, and to make CML just a hum in the background of their lives, or at the very least bring it down to a dull roar.
I hope we were able to help them do that, at least a little.
I am now heading to San Diego to attend the American Society of Hematology’s (ASH) annual conference. I am so grateful for the opportunity to hear some of the best and brightest speak about the exciting things that are happening in CML treatment. I will also be meeting up with other CML patient advocates to hear what living with CML means in other parts of the world. This knowledge is power – especially if you are looking to turn down the CML noise in your life.
- For daily updates from ASH, keep an eye on our Facebook page (https://www.facebook.com/thecanadiancmlnetwork). You can also follow along on Twitter @cdncmlnetwork, or right here at CML-IQ at http://cml-iq.com/.
- If you are interested in reading the scientific abstracts, they are available on the ASH website at http://www.hematology.org/Annual-Meeting/3225.aspx.
- There were some technical difficulties with our recent webinar with Dr. Wendy Lam. But a transcript of her presentation available shortly on our website, http://cmlnetwork.ca/.