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Living with CML

How to navigate the physical and emotional challenges brought on by a diagnosis of chronic myelogenous leukemia

If you’ve been diagnosed with chronic myelogenous leukemia, you may need help with practical tasks, such as sorting through treatment information, managing side effects, and finding financial help for medical expenses. Your healthcare team, which can include your doctor, CML specialist, nurse, social worker, and others, can assist you in many of these areas. Here are some steps you can take to find the support you need.

Take an active role in your medical care.
When it comes to medical treatment for CML, you have many options. Getting a second opinion is recommended, as is consulting with a leukemia expert before choosing a treatment. (Both of these are covered by most insurance plans.) You can choose 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. Your healthcare team can answer your questions and help you make the decisions that are right for you. Developing a relationship with all the members of your team is critical to getting the best care possible.

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 will be in your role as an active member of your healthcare team. Although the Internet is a valuable source of information, figuring out which websites are most accurate and up-to-date can be challenging. An oncology social worker can provide guidance on evaluating the information you find.

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. 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.

The more you know about CML, the more comfortable you will be in your role as an active member of your healthcare team.

Get organized.
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. Organize the information in a 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.

Be resourceful.
The financial strain of cancer is often overwhelming, but help is available. For those who are eligible, CancerCareprovides limited financial grants to help with cancerrelated costs, such as transportation to and from treatment or childcare when you are ill. Social workers can help you explore other options, such as government assistance.

Researchers have made great strides in treating people with CML. Because of the effectiveness of targeted treatments like imatinib mesylate (Gleevec®) and dasatinib (Sprycel®), for some people, having CML is similar to having a chronic illness. Their condition is managed well, and they live with it for a long time. While this offers increased hope for people diagnosed with CML, a long-term illness presents its own set of emotional challenges. Here are some tips for managing the emotional challenges of coping with CML over the long term.

Develop good communication with your healthcare team.
Being able to talk easily and comfortably with the members of your healthcare team, such as your doctor, nurse, or social worker, goes a long way in helping you feel more in control. Remember that you, too, are a key member of this team. Taking an active role in your care helps you feel more involved. Preparing a list of questions before your appointments is one way to make sure all your concerns are being addressed, as well as asking someone to join you so you can process the information afterward together.

Stay in touch with the people who comfort you.
Family and friends, whether they live next door or far away, are important members of your team. The practical help they provide on lowenergy days, and the comfort they can bring you, can be considered a form of “treatment.” Sometimes it’s hard to ask for or accept help. You may worry that you’ll be a bother or burden, but family and friends usually want to help and be involved. If that’s the case, let them – it’s reassuring for them and good for your health. Visits, phone calls, letters, and emails are all good ways to keep in touch and get support from those who care about you.

Acknowledge your emotions.
A chronic illness might make it necessary for you to adjust the plans you had for yourself, and this can affect you emotionally. For example, people sometimes struggle with feelings of sadness or worry as they think about facing the future with a long-term illness. A support group can connect you with others in similar situations who can share how they are coping. Individual counseling is also available to help you to live as full and active a life as possible.

Draw strength from your spiritual side.
Strength comes from many different sources. One place people often turn to when coping with illness is spirituality, which can refer to one’s religious beliefs, faith, or life philosophy. Spirituality is about finding purpose and comfort in your own personal understanding of the meaning of life. Examples of activities that let you explore your spiritual side include prayer, meditation, and reading life-affirming texts.

Invest in your own resilience.
Resilience is the ability to manage whatever might come your way. Having a good support system is part of being resilient, but so is being good to yourself. Try to do small things to take care of yourself every day. Read a good book, buy yourself a small gift, watch a favorite movie, or listen to your favorite music. These may sound like luxuries, but pampering yourself in little ways goes a long way in helping you adjust to life with CML. Treating yourself right and finding new ways to enjoy life will help you accommodate any changes CML may bring.

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