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LGL Leukemia: How do Infections Affect your Typical Life?

UVA tech in a lab
A lab technician at UVA examines a blood sample.

Kristine Olson, PhD, contributed this post. She is an instructor of research with UVA Cancer Center and works closely with Thomas P. Loughran, Jr., MD, who discovered LGL leukemia.

Disclaimer: Please discuss your specific situation with your healthcare provider. This article will discuss general guidelines.

If you would like some background information on LGL leukemia, here are some introductory resources:

LGL Leukemia Patients Have a Wide Range of Symptoms

If you’ve been diagnosed with LGL leukemia, your symptoms may fall within a wide range, from asymptomatic (no symptoms) to symptoms such as chronic infections. While some patients lead fairly typical lives, with occasional infections or illnesses, others seem to acquire recurrent infections that prevent them from working or doing activities that they enjoy. You may wonder if you’re at risk for acquiring an infection if you are in public places such as a grocery store or if you travel by airplane.

The typical LGL leukemia patient is 60 years or older and may have grandchildren. Patients have expressed concern about whether spending time with a sick grandchild puts them at risk for getting sick. If you have chronic infections, it may be difficult to work and keep up a household. How do you deal with symptoms and still lead a fulfilling life?

Neutropenia & Infections: How Do These Affect Your Everyday Life?

Your immune system includes multiple components that defend your body from disease, such as bacterial infections. One part of this defense includes neutrophils, which are a type of white blood cell. You can read more about neutrophils and white blood cells in “How are white blood cells classified?” When you get blood work completed, you will usually have your neutrophils measured. You may see this value in your test results stated as the absolute neutrophil count, or ANC for short.

What Is a Satisfactory Neutrophil Count and How Does this Relate to Whether I Should go on Treatment?

A common symptom of LGL leukemia is a low ANC. A term to describe low ANC is neutropenia. LGL leukemia patients may have neutropenia due to leukemic LGL cells damaging neutrophils, or their precursors that are produced in the bone marrow.

Reference ranges for lab results can differ slightly based on age and gender, but generally a healthy/normal minimum ANC level is 1800.  You may see ANC written as 1.8 k/µL or 1800/µL.  The overall meaning is the same, it is just written in different units.  If we choose the latter way, it would mean the ANC value is 1800 neutrophil cells per microliter of blood (a microliter is 1 million times smaller than 1 liter).

Loughran advises that an ANC level of 500 or more is the threshold for the amount of neutrophils needed to efficiently fight off an infection. This level of 500 is called moderate neutropenia. Loughran generally advises his patients that an ANC level between 500-1800 may be adequate as long as they do not have recurrent infections. If your ANC falls below 500, this is called severe neutropenia. At this level, a bacterial infection can be life-threatening, since there are fewer neutrophils available.  Patients should consult their physician about their ANC level to get a proper evaluation and determine if treatment needs to be initiated.

If a patient chronically has severe neutropenia (ANC lower than 500) or moderate neutropenia (ANC of 500 – 1800) with recurrent infections, Loughran typically recommends initiating treatment. For more information about treatment initiation, see “LGL Leukemia Treatment Options (of the Past, Present and Future.)”

Generally, methotrexate is prescribed as a first-line therapy. LGL leukemia patients are given a low dose, and while some symptoms are treated in the short-term, it takes several months before an evaluation can be made as to whether the treatment is working. One way to evaluate the effect of treatment is by checking blood cell counts after a few months for a neutrophil count over 500.

In some urgent cases (ANC of 0-200), when it is critical to quickly raise the neutrophil count, your physician may treat you with medications such as Neupogen or Neulasta. These medications work differently than methotrexate, since they are growth factors that help the bone marrow produce more neutrophils. While these medications help in the short term to quickly raise the neutrophil count, they are not a long-term solution because the underlying problem of low neutrophils has not been resolved.

Support Our Efforts: Potential Cures for LGL leukemia

We’re home to the LGL Leukemia Registry, the only national registry that collects, manages and analyzes information on people with LGL leukemia. The registry also maintains a bank of tissue and blood samples from LGL patients. Find out how you can help researchers by participating in the registry.

What Is My Risk of Acquiring an Infection in Everyday Life?

Most patients with LGL leukemia are in a stage of life with grandchildren and/or may be retired and want to travel.  These patients are often concerned that spending time with grandchildren who may be sick, or traveling by airplane (a notorious environment for exposure to others with illnesses) may make them more likely to acquire an infection.

Loughran generally advises his patients that as long as their ANC is regularly above 500 and they do not have recurrent infections, they can go about typical activities without having to worry about being at greater risk of acquiring an infection. Patients in this category may still get infections, but it would be at the same incidence as the general population. In addition, he has indicated that infections are typically NOT acquired from the environment (for example: not from sick children or breathing the air on an airplane).

In reality the source of a bacterial infection is often from the patient’s own body. For example, we have bacteria living in our gut which perform vital functions to keep us healthy. If our immune system is not working properly, the ratio of bacteria can change in a way that one type will take over, thus causing an imbalance and acute illness.

If you are concerned about acquiring an illness from general environmental exposures, you can do two things to protect yourself: wear a mask during airplane flights and frequently wash your hands.

Is There Anything Else I Can Do to Improve My Immune Health?

It may seem like even though you are taking precautions to prevent infections that you are still getting sick all the time. This is frustrating because it prevents you from leading a normal life. It is important to remember that everyone is different, so discussing your situation with your physician may lead to ideas for potential lifestyle changes you could try that may improve your quality of life.

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