6 Tips for Coping with Chronic Myeloid Leukemia
Prevention & Treatment New treatments have changed CML from a deadly diagnosis to a chronic, manageable condition. Here are six strategies to maximize your health and happiness.
Thanks to treatment breakthroughs, the five-year survival rate for CML has skyrocketed to 63 percent, according to the Leukemia & Lymphoma Society. And the New England Journal of Medicine reports that it’s almost 90 percent for patients taking tyrosine kinase inhibitors (TKIs). This means that taking your medication every day, getting tested four times a year, and keeping track of it all is a lifelong commitment.
Here’s how to deal:
1. Learn about CML
Knowledge is power. Get all the information you can from the Leukemia & Lymphoma Society (lls.org), American Cancer Society (cancer.org), National Institutes of Health (nih.gov), and other organizations.
2. Ask questions
Put that knowledge to use during your doctor visits. Come prepared with questions. Bring a pen and paper, or use the recorder or notepad on your smartphone so you can retain critical information.
3. Know your treatment options
There are several different TKIs, and the one you’re taking now might not be the one you stick with, depending on the side effects and how the disease responds to treatment. If you understand the options, you can partner with your doctor to make the best treatment decision.
4. Take your medication exactly as prescribed
TKIs do a great job of managing CML, but they’re not a cure. If you’re feeling better, that means the medication is working—but it won’t keep working if you don’t keep taking it.
5. Track your quarterly testing data
The only way to tell if treatment is successful is through tests that measure CML cell levels and other factors. Keep track of this data with a spreadsheet or filing system, check it for trends, and compare it with your side effects journal.
6. Connect with other CML survivors
Find out how other people are coping and get emotional support. LLS can connect you with support groups and online communities.New treatments have changed CML from a deadly diagnosis to a chronic, manageable condition. Here are six strategies to maximize your health and happiness.