When Will My Doctor Know It’s the Right Time to Treat?

Usually, treatment is not initiated until there are certain indications to treat. Your hematologist oncologist will monitor how fast your white blood cells are reproducing, as well as your levels of red blood cells and platelets. Exactly when treatment should start may vary depending on the particular patient, but most doctors will wait until the CLL has caused significant symptoms, lower blood counts, enlarged lymph nodes, or an enlarged spleen or liver. There have been numerous studies that show treating earlier is not always better, and because some treatments have toxic side effects, it’s best not to start taking them until they’re needed.

What Is Watch and Wait for Chronic Lymphocytic Leukemia?

Watch and wait (sometimes “watchful waiting” or “active surveillance”) refers to the period after you’ve received a CLL diagnosis but before treatment starts. Due to the nature of CLL, some patients take years to display symptoms following an initial diagnosis. Some patients feel uneasy or anxious in this watch-and-wait phase, knowing they have cancer but are not receiving immediate treatment. Try not to worry. To date, no evidence has shown that starting treatment before symptoms appear improves patient outcomes. Many CLL patients enjoy happy and productive years without symptoms or treatment.

Do I Have Any Lifestyle Limitations with CLL?

Many patients lead asymptomatic, normal lives for many years with CLL and it is not usually necessary to modify your daily activities. Your doctor will talk with you about any limitations due to CLL, plus how to manage any treatment side effects and cope with your diagnosis. A healthy lifestyle and reducing stress are key. Your doctor may also recommend changes to your habits to prevent infection, because the CLL and any treatments you may be taking make it harder for your body to fight off infection. Your doctor may recommend keeping up with certain vaccines or other treatments. Given the ongoing pandemic, your doctor may even recommend fewer clinic visits to reduce the chance of infection. Also, CLL is usually diagnosed later in life. As an older person, patients with CLL often have other conditions going on that may require lifestyle management or changes. Talk with your care team about the things you can do to manage CLL at any stage, and about any other diseases you may have.

What Type of Follow-Up Do I Need for Watchful Waiting or During Treatment?

You will meet with your doctor regularly and undergo regular blood tests to watch for any progression of CLL or your response to treatments. It may be weekly, monthly, or every few months. This is a good opportunity to go over any changes in your health, new symptoms, or side effects you are having, and results of tests. CLL is a long-term condition with some periods of remission and recurrences as the disease progresses. Work with your care team to come up with a schedule for regular follow-up exams and testing.

Will CLL Continue to Worsen Until I Eventually Die from It?

Not necessarily. About 15-20% of CLL patients never require treatment. While the disease varies from person to person, it often takes years before the disease worsens to the point where treatment is needed. Likewise, patients who receive treatment can live with the disease for years and eventually die of something other than CLL.

Does Having CLL Make Me More Likely to Develop Another Type of Cancer?

Yes. Because CLL hampers your immune system, you may be more vulnerable to some secondary cancers. Consult with your doctor about the best plan for your specific case, but in general, it’s advisable for CLL patients to keep up with recommended screenings, such as skin cancer checks, mammograms, colonoscopies, and so on. Additionally, CLL patients may develop blood cancers related to the CLL. For instance, Richter’s syndrome occurs when CLL cells transform into a more fast-growing type of cancer. Approximately 2-10% of CLL patients develop Richter’s syndrome, and your specialist should be alert to any new symptoms that signal a change in your disease. Richter’s syndrome requires more aggressive treatment than CLL, including chemotherapy and possibly a stem cell transplant.

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