When you’re diagnosed with chronic lymphocytic leukemia (CLL), you may need help with practical tasks (such as sorting through treatment options or finding financial assistance for medical expenses) as well as with the emotional challenges of coping with your diagnosis. Your health care team can assist you with many of these concerns. You can also take steps on your own to find the support you need.
Here are some hints for managing the practical and emotional concerns you may have after a CLL diagnosis:
See a doctor who specializes in treating blood cancers. This kind of specialist is usually called a hematologist oncologist. To find a blood cancer specialist, ask your primary care doctor to recommend one, or contact a nearby cancer center. The National Cancer Institute (www.cancer.gov or 1-800-4-CANCER) publishes a list of NCI Designated Cancer Centers. The Leukemia & Lymphoma Society (www.lls.org or 1-800-955-4572) offers a helpful fact sheet titled “Choosing a Blood Cancer Specialist or Treatment Center.”
Talk with your health care team.Your health care team includes nurses and social workers as well as your primary care doctor, cancer specialist, and/or CLL specialist. Talking openly with members of your team will help you feel more involved in your health care. Remember that you, too, are a key member of the team, so speak up about any concerns you may have.
Understand the treatment plan your doctor is recommending. CLL can be “indolent” (not growing) for months or years. During this time, “watchful waiting” may be the best treatment option. If this is the case for you, ask your doctor how he or she will decide when to recommend active treatment of your CLL.
Keep written notes. Make notes about symptoms or side effects you notice, and any other questions or concerns you have. This can help you keep track of issues to discuss with your doctor or health care team so that you can get the answers and support you need. You may find it helpful to take someone with you to your medical appointments. Taking notes during conversations with your health care team may be beneficial as well, as you will be able to review what was discussed at a later time.
Try to avoid infections. When you have CLL, your body can’t fight off infections as well as it normally would. Try to stay well by eating healthily and getting plenty of rest and regular exercise. Avoid being around people who are sick. Wash your hands thoroughly and often. See your doctor if you feel unwell or are running a fever.
Share your thoughts and feelings. Opening up about your diagnosis with family members and friends is not always easy, but it can be helpful, both for you and for them. Talking to a trained counselor or oncology social worker can help you and your loved ones improve communication.
Accept help. It can be hard to ask for or accept help. You may worry that you’ll be a burden, but family and friends usually want to be helpful. Think about how your loved ones can support you in practical ways. This way, you can be prepared to suggest ways that they can help. For example, do you need help with household chores, rides to medical appointments, or managing financial paperwork?.
Be good to yourself. Living with CLL is stressful. Take care of yourself by connecting with sources of strength, which may include activities like prayer, meditation or even taking a relaxing walk. Pamper yourself in small ways (take a long, warm bath, read a good book, or buy yourself a small gift).
Connect with others. A CLL diagnosis often comes as a shock, especially if you have had no symptoms and feel well. And watchful waiting, which is sometimes the best treatment option, can put a strain on your emotions. You may find it helpful to join a support group so you can connect with others who are going through similar experiences. CancerCare’s professional oncology social workers lead free face-to-face, telephone, and online support groups.
Ask about financial help. Cancer often places a financial strain on the patient and his or her family. CancerCare provides limited financial grants to eligible individuals to help with treatment-related costs such as transportation to treatment and child care. Our social workers can also help you explore other sources of financial assistance.