Chronic Lymphocytic Leukemia

Managing Your CLL

Living with a chronic disease means taking actions to keep yourself as healthy as possible. To do that, learn everything you can about potential side effects from the disease and/or treatment as well as how to manage appointments required.
Make healthy lifestyle choices. Focus on making positive choices in many areas of your life, such as staying active, following a healthy diet, reducing your risk for infection, caring for your emotional well-being and surrounding yourself with support. Research shows exercising and following a nutritious diet offers many health benefits, including helping you be better prepared for future health issues.

Learn about potential side effects. Most cancer treatments have side effects, but you likely won’t experience all of them. People respond differently, even to the same diagnosis and type of treatment. Learn about the possible treatment-related side effects you need to be aware of before starting treatment. Your health care team may provide you with a list of symptoms to watch for. Some may indicate the cancer is progressing, and your treatment plan may need to be re-evaluated.

Keep in mind that side effects may be more intense when treatments are given in combination. Severe side effects aren’t common but can occur with certain types of treatment. Ask if you are at risk, how you can identify the signs and what to do if they occur. Prompt treatment may help prevent more serious complications.

Late effects are side effects that do not begin immediately during treatment. They may appear weeks, months or even years after treatment begins. Just as with other side effects, every person reacts differently and some people may not have them at all. They may go away over time; others may be permanent. They often depend on the type of treatment and the length of time it was given, as well as your age, gender and overall health.

Lower your risk of infection. People with CLL often have a weaker immune system, which may make them more susceptible to developing infections. Infections while you are already managing CLL can become serious, making it important to detect and treat infections as soon as they start. Your doctor will talk with you about the signs to watch for and what to do if they occur.

Another way to reduce your risk of infections is to stay up to date with your vaccinations and health screenings for other cancers. Vaccinations may include shots for the flu, pneumonia, shingles, COVID-19 and others. Remember to continue to get regular screenings, such as mammograms, colonoscopies, skin exams, Pap smears, HPV testing, prostate specific antigen (PSA) blood tests and any additional testing your doctor recommends.

Consider telehealth options. Telehealth is accessing medical care from a distance through technology. It may be a way to report symptoms and stay in touch with your doctor between in-person follow-up appointments. Virtual appointments are not designed to replace in-person visits, but they do provide you with a convenient alternative. They may be a welcome option, especially if you are in remission, taking oral-based therapies or receiving maintenance therapy, or you have already had your initial consultation and may not need an in-person visit.

Attend follow-up visits. These appointments are important for catching a recurrence early, addressing any side effects or issues and monitoring you for second cancers. A second cancer is a completely different or new type of cancer diagnosis.

Your doctors will monitor you closely through regularly scheduled appointments. During these visits, you will have exams and lab tests to look for physical signs of CLL and to measure how well the CLL is responding to current treatment. When your treatment is no longer working or is not as effective as it once was, your doctor may try another therapy.