September 01, 2016
AML survivor: Where to find good information
BY Gillian Kruse
When I was first diagnosed with acute myeloid leukemia (AML), I had a million questions about what was happening, what was going to happen, what could possibly happen and when my life would get back to normal already.
My care team was always willing to answer my questions, when they could. But it just wasn’t practical for them to sit with me for six hours at a time until all of my questions were exhausted, and sometimes there just wasn’t an exact enough answer for my specific situation.
Luckily, I found a number of other sources of high-quality information to help me navigate the ins and outs of leukemia and stem cell transplants.
The right kind of websites
When I first heard that I might have leukemia, I went straight home and looked online to find as much information as I could on available treatment options, survival rates and anything else I could learn. I quickly discovered that not all information on the internet is created equal – and a lot of it was less helpful than I’d hoped. Looking at statistics or survival rates, especially when you don’t have the right kind of background knowledge to put them into context, is a really good way to make you feel worse about your future.
Soon after that, I placed a self-imposed medical research internet ban on myself. I couldn’t just search online and click on random links because all I would do is convince myself that I was dying. My go-to websites for information became those of reputable cancer organizations that were run by professionals and had accurate, easy to understand information.
Straight from the source
I’ve always been interested in science and might have gone into medicine if I wasn’t afraid of sticking other people with needles and passing college-level chemistry classes. Biology was always really fascinating to me, and I’d taken biology during college, so I came into my experience as a patient understanding a bit more about cancer than the average person.
After asking more and more pointed questions about the how and why of my treatments and conditions, my stem cell transplant team started giving me printouts of research papers about the procedures and the most recent research in the field. When they wanted me to try a new maintenance chemo drug, I got printouts of three studies – two that had been done at MD Anderson – that showed how patients like me had stayed in remission after taking the drug.
I really appreciated that they took the time to print out these research papers for me to better understand what medications I was going to be taking and how the previous clinical trials that showed these treatments were effective were set up. It helped me a lot to go back into science class mode and think about my cancer from a “the human body is so interesting and modern medicine is so cool” perspective, rather than one where I was scared because I didn’t know enough.
The Learning Center
MD Anderson’s Learning Center has handouts and other information about pretty much every medical condition even remotely associated with cancer. I could stop by The Learning Center if I was at the hospital, but even better, I could access all of these handouts online through my myMDAnderson account. The information is written in plain English so it’s easy to understand, and there are some in Spanish and other languages as well for those who understand those better. The handouts were also really helpful in the practical things, like when I should get my flu shot or what foods I couldn’t eat while recovering from my transplant.
There’s a lot of information out there about cancer, and as I learned not all of it is the best. Getting the right information from the right place won’t just make you more informed; it’ll help you make better decisions with your care team about what’s right for you -- and put your mind more at ease in the process.
Getting the right information from the right place will help you make better decisions with your care team about what’s right for you.