If you’ve been diagnosed with chronic myelogenous leukemia (CML), you may need help with practical tasks such as sorting through treatment options, managing side effects and finding financial assistance with medical expenses. Your health care team, which includes your oncologist, CML specialist, nurse, social worker and others, can assist you in many of these areas. There are also steps you can take to find the support you need.
Here are some helpful hints for managing the practical concerns raised by CML:
Take an active role in your medical care
When it comes to your CML medical treatment, you have many options. Getting a second opinion is recommended, as is consulting a leukemia expert before choosing a treatment. (Both of these are covered by most insurance plans.) You can opt to be treated at a major cancer center or to receive your care locally, with your doctor consulting with a CML expert about your case. If you grow resistant to a particular drug, other treatments or clinical trials are available. It is helpful to know that oncology care is provided in a team which usually includes a nurse, social worker, and other health care professionals. Developing a good relationship with the members of your health care team is critical to getting the best care possible, as they can answer questions and help you make the decisions that are right for you.
Do your research
Finding reliable information and using it to make decisions is one of the key tasks for people with CML. This is important because the more you know about CML, the more comfortable you’ll be in your role as an active member of your health care team. Although the internet is a valuable source of information, figuring out which websites are most accurate and up-to-date is challenging. CancerCare’s oncology social workers provide guidance on evaluating the information you find, and our expert-led Connect Education Workshops help you stay on top of the latest treatment news.
Reach out to experts for help in managing side effects
Fatigue, nausea and diarrhea are some of the side effects commonly experienced by people receiving targeted treatments for CML. CancerCare offers free booklets on these topics. Read them on our website, www.cancercare.org, or order copies by calling 1-800-813-HOPE (4673). Other common side effects include dry skin, dry mouth and weight gain. Special lotions with a higher content of moisturizers help with dry skin (ask your nurse for recommendations), and your dentist can prescribe special products, such as nonalcoholic mouth rinses, to lessen the effects of dry mouth. For help in creating a well-balanced diet tailored to your needs during and after treatment, consult a hospital nutritionist.
Maintaining a datebook lets you keep track of medical and other appointments and helps provide peace of mind. It also allows you to schedule enjoyable events to keep a healthy balance of activities in your life. Keeping all your medical information in one place, such as a three-ring binder, makes it easy to find what you need quickly and easily. You can organize the information in the way that works best for you. For example, you might have a divider for each doctor, or for each health issue you are keeping track of.
The financial strain of cancer is often overwhelming, but help is available. It may take some effort and creativity to piece together assistance from various sources. For those who are eligible, CancerCare provides limited financial grants to help with cancer-related costs such as transportation to and from treatment, or child care when you are ill. Our social workers are also trained to help you explore other options, such as government, pharmaceutical and private assistance.