Tait Shanafelt, M.D., Hematology, Mayo Clinic

DEAR MAYO CLINIC:

I was recently diagnosed with chronic lymphocytic leukemia. I am 55 years old, exercise regularly and feel fine. I have no symptoms. My doctor's approach is to "watch and wait." I'm uncomfortable with watchful waiting. Is there more aggressive action that can be taken at this time while it is still early?

ANSWER:

This is a common question among patients with chronic lymphocytic leukemia (CLL). Watchful waiting has been the approach traditionally used with CLL patients who don't have symptoms because studies in the 1980s and 1990s indicated no lengthening of life with early treatment compared to delayed treatment. While this remains the standard approach outside of clinical trials, new research is re-evaluating this question because we now have more effective treatments than those tested in the past. We also have more accurate ways to identify which early stage CLL patients will experience aggressive disease.

Chronic lymphocytic leukemia is a type of cancer of the blood and bone marrow -- the spongy tissue inside bones where blood cells are made. The term "chronic" in its name comes from the fact that CLL typically progresses more slowly than other types of leukemia. "Lymphocytic" refers to the cells affected -- a group of white blood cells called lymphocytes, which help the body fight infection.

CLL is the most common type of leukemia in adults. It usually develops later in life, with the average age of onset between 65 and 70. Between 15 and 20 percent of patients are diagnosed in their 50s, and about 5 percent are under age 50.

Typically, CLL is found incidentally when people have blood tests for an unrelated reason, before symptoms appear. The watch-and-wait strategy was developed in the '80s and '90s when research clinical trials examined whether immediate treatment with the chemotherapy available at that time was any better than giving the same treatment after symptoms developed. Results showed there was no improvement in survival with early treatment. Basically, all it accomplished was to give patients the side effects of treatment sooner.

But more-recent developments have prompted the CLL research community to take a new look at that old strategy. We now recognize there's tremendous variation in how this type of cancer behaves in different people. Some individuals can live with it for 20 to 30 years, and the disease never causes symptoms or requires treatment. For others, CLL progresses quickly, and they may need treatment within several months. Over the last decade, we've developed a number of new tests that profile the leukemia cell and allow us to better predict how CLL is going to behave in a patient.

In addition, the last 10 to 15 years have been a time of tremendous improvement in the effectiveness of treatment for this illness. CLL treatment has traditionally relied on intravenous chemotherapy medications. This remains the standard treatment. But new approaches combining chemotherapy medications with monoclonal antibodies designed to help the body's immune system recognize the leukemia cells and fight the illness have improved effectiveness.

There's still no cure for CLL other than bone marrow transplant, which is not an option for most patients. The goal for most patients is to control CLL and reduce its symptoms. After treatment, patients require monitoring and may need to be treated again periodically. A number of new chemotherapy and antibody therapies have recently become available and provide more options to treat CLL when it recurs.

Our improved ability to determine which CLL patients are at high risk for experiencing aggressive disease by using new prognostic tests, combined with the increasing effectiveness of CLL treatment, has caused researchers to question whether we should treat early stage patients with aggressive forms of CLL before symptoms appear.

This strategy is being tested in clinical trials at Mayo Clinic and elsewhere. Participation in these clinical trials isn't a good fit for everyone. But as a younger individual with CLL, you would be exactly the kind of person who might benefit from consultation at a medical center where the new prognostic tests can be performed to determine if you have an aggressive form of chronic lymphocytic leukemia. Also, you could learn about clinical trial opportunities.

I recommend you talk to your doctor about medical centers in your area that may be appropriate. Reliable information is also available online from Mayo Clinic (www.mayoclinic.org), as well as the Leukemia and Lymphoma Society (www.leukemia-lymphoma.org). -- Tait Shanafelt, M.D., Hematology, Mayo Clinic, Rochester, Minn.

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Newer, More Effective Treatments Are Available for Those With Chronic Lymphocytic Leukemia