Receiving a diagnosis of chronic myeloid leukemia (CML), also known as chronic myelogenous leukemia, can be frightening. Learning about CML and the resources available to you, however, can help you feel in control and supported through your CML journey. This Chronic Myeloid Leukemia Resource Navigator for Patients was developed together with leading patient advocates, who shared their experiences and insight, with the hope that it will help you connect with patient organizations and resources as you and your care partners navigate through your diagnosis and treatment. These organizations provide education and support for your health and well-being, as well as help with practical matters, logistics, and financial and legal concerns.
A good place to begin to learn about CML would be the Getting Started section, which includes both cancer and CML-specific Educational/Support Websites. These websites provide a variety of educational resources and support services, with several offering assistance in finding a CML specialist or treatment center in your area. This information may help you to better understand how to make decisions about your care and treatment.
Together with your healthcare team, you are encouraged to play an active role in all medical decisions needed regarding workups, treatment, monitoring, and follow-up. Monitoring your CML is important in order to see how you are responding to therapy and to address any undetected side effects promptly so that your treatment is not interrupted. Being able to quickly detect any changes in your clinical status is also becoming increasingly important because of the growing number of new treatments available.
A diagnosis of CML may be a substantial financial burden with or without health insurance, and it may affect your ability to do your job. You may also need to travel for treatment. You will find numerous resources listed in the Resources During Treatment and Financial and Legal Support Resources sections that may assist with the cost of medication, travel, and housing.
At the back of this resource guide you will find a Care Team, Medical History, Treatment Summary, and Care Plan Section that you may choose to use to track the details of your care. The amount of information that you receive during your journey may be overwhelming, so you may find that using a tracking tool like the one provided here may be helpful for your appointments with your care team, your primary care physician, and other specialists.
We hope you will find this Chronic Myeloid Leukemia Resource Navigator for Patients helpful now and throughout your CML journey.