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Chronic Lymphocytic Leukemia (CLL): Watchful Waiting

What is watchful waiting? 

Watchful waiting is when treatment is not started right after someone is diagnosed with a disease. It’s also known as observation or active surveillance. The goal is to keep track of the disease closely to see if it gets worse or starts to cause any symptoms. If it does, treatment can then be started.

Why watchful waiting is used for CLL

Watchful waiting is often a good option for people with early stage and low- or intermediate-risk CLL that isn’t causing symptoms, or is only causing mild symptoms. In these cases, it may be better to wait to begin any treatment, especially one that could cause severe side effects. Research has shown that for early stage CLL, watchful waiting doesn't cause harm compared with starting treatment right away.                                                                                           

What happens during watchful waiting for CLL

Your healthcare provider will keep track of your blood counts to see if they get worse or if you begin to have symptoms that need treatment. You will need to have your blood drawn on a regular basis to check your blood cell counts. Your healthcare provider will look at how your counts change over time. For example, is your red blood cell count steadily dropping? Blood counts will be checked every 3 to 6 months. Your healthcare provider will also watch for:

  • Infections that keep coming back

  • Rapid swelling in certain organs, such as your lymph nodes, liver, or spleen

  • Symptoms like tiredness (fatigue), fever, and weight loss

These changes may mean that the disease is getting worse.

CLL usually progresses much more slowly than acute types of leukemia. Many people can live with the disease for many years without any problems and without needing treatment.

Watching for symptoms

Let your healthcare provider know if you have any of these symptoms:

  • Fever or other signs of infection

  • Chills

  • Night sweats

  • Unexplained weight loss

  • Increased tiredness (fatigue)

  • Pain in the abdomen

  • A feeling of fullness in the abdomen

  • Enlarged lymph nodes, often felt as lumps under the skin

  • Bleeding or bruising easily

If you start having symptoms or if your healthcare provider sees signs that the leukemia is progressing, you can then start treatment. The type of treatment you have depends on the stage of your CLL and other factors.

Online Medical Reviewer: LoCicero, Richard, MD
Online Medical Reviewer: Stump-Sutliff, Kim, RN, MSN, AOCNS
Date Last Reviewed: 6/1/2018
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