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LGL Leukemia FAQs

Every patient or caregiver has their own unique experience with LGL leukemia. However, there are many questions that we hear frequently regarding symptoms, treatments and daily concerns on living with LGLL. In this FAQ section, we will attempt to cover the most common questions that we receive.  New questions and answers will be posted periodically, so please check back for more information. 

Have a question that you would like answered? Submit it to LGLQuestion@virginia.edu, and it may be featured with an upcoming addition.

Disclaimer: The content below is for informational purposes only.

Why do I still get so many infections even though my blood work is normal? 

If your blood counts are normal, there is no indication that you are at an increased rate of infection due to LGL leukemia. LGL leukemia patients are more susceptible to infections if their absolute neutrophil count (ANC) is lower than normal. Your body uses neutrophils to fight off bacterial infections, therefore if there are fewer to begin with, it may be more difficult for your body to fight an infection.

With ANC levels that are persistently high (more than 500), LGL leukemia patients are safe from serious infection. With ANC levels under 500, there is a risk of infection. Patients with very severe neutropenia have an ANC below 100 and are at greatest risk of a severe infection.

Should I travel if my neutrophil count is low?

Generally it is safe to travel. Infections that patients develop are almost never acquired from the environment or from someone else who is sick. When the ANC is low, patients are susceptible to infections that result from the bacteria (germs) that normally live in our bodies. The best advice is to wash hands frequently. If there is extended travel on an airplane, a mask could be considered as the air is recirculated.

Is it safe to receive vaccinations?

There really are no data on risks of vaccination for LGL leukemia patients. However, to be extra safe, it is advised to avoid live virus vaccinations. This is general advice for patients with a compromised immune system. 

Is it safe for a family member living with me to receive vaccinations?

It should be safe for a family member living with the patient to receive vaccines, even those that are live virus.

If I have a fever, should I go to the ER?

Our general advice is that if you have a persistent fever for more than a few hours of 101 or above, you should be seen in the ER. If you have an ANC below 500 with fever at that time, it is most likely that you will be admitted to the hospital for IV antibiotics, just to be safe.

Is there a relationship between LGL leukemia and autoimmune disease?

One of the goals of our research is to try and understand if there is a link between LGL leukemia and autoimmune disease. T-LGL leukemia is often associated with the autoimmune disease rheumatoid arthritis. Research has shown that autoimmune disease is often present in the family history of LGL leukemia patients. The “which came first” and whether one causes the other are not known and are being investigated.

Given the treatment regimens and chronic nature of LGL leukemia, why is it classified as a cancer and not an autoimmune disease? 

Although LGL leukemia is chronic and managed with immunosuppressant treatment, as in autoimmune disease, it is defined as a cancer because there is clonal expansion (the cells are copying themselves) of either T cells or NK cells. For the T-cell type, a TCR rearrangement test will confirm the clonal expansion. If the clonality is not present, then it is not officially LGL leukemia. In the NK-cell type, it is harder to show clonality, but it could be established if chromosomal abnormalities are present. The disease was named leukemia because the cells are clonal and are in the blood.

I am constantly fighting fatigue.  Is this a symptom of LGL leukemia or a symptom of the treatment for it?

This is a very difficult question to answer because there can be many reasons, other than LGL leukemia, to have fatigue. One reason to have fatigue that would be related to LGL leukemia would be the presence of anemia. That could be an indication for treatment of LGL leukemia. Interestingly, some LGL leukemia patients have noted a direct correlation between their fatigue and the results of their neutrophil count: the lower the neutrophil count the more severe the symptoms of fatigue. This is not a usual way that we think of fatigue in medicine, but it is clear that this has been observed in a number of our patients.

I have bone pain.  Is this related to the LGL leukemia?

Bone pain would not be part of LGL leukemia. Sometimes our patients receive growth factors to help their neutrophil count increase (Neupogen, Neulasta). Bone pain is a common side effect of those medicines.

It appears that some people with LGL leukemia have symptoms while others do not.  If I have had symptoms am I more likely to experience others in the future?

The problems that occur most frequently in patients with LGL leukemia are low blood counts or rheumatoid arthritis. Generally, symptoms that develop are related to these problems. If the neutrophil count is too low (neutropenia), then patients may suffer from repeated bacterial infections. If the red cell count is too low (anemia) then patients may experience fatigue or shortness of breath when they exert themselves. Patients with LGL and rheumatoid arthritis are subject to the arthritis symptoms that can include pain, stiffness, and swelling in multiple joints.

So, someone is not destined to continue to have problems in the future if treatment is successful.

Is LGL leukemia hereditary?

No, LGL leukemia is not inherited. Although patients may have mutations present in their leukemic LGL cells, these are acquired mutations and not present in other cells of the body.

Can biologics (for example: vaccines, blood and blood components, gene therapy, tissues) or environmental agents cause LGL leukemia?

While rare, development of T-LGL leukemia after solid organ or hematopoietic (blood) stem cell transplant can occur.  Currently, we have no definite evidence to support that any environmental agent can cause LGL leukemia.  We continue to investigate the theory that the initial event leading to development of LGL leukemia may be infection with a new type of virus.

Is bone marrow transplant (BMT) or stem cell transplant (SCT) a good treatment option for LGL leukemia?

No, we don’t recommend BMT/SCT for most patients with LGL leukemia, because:

  • Most patients will respond to the usual medications for LGL leukemia and therefore not need a stem cell transplant
  • Stem cell transplants have a high chance of serious side effects, including death

In instances where the standard medicines for LGL leukemia have been unsuccessful, your oncologist may discuss BMT/SCT with you.

About BMT/SCT Therapy

Two types of BMT/SCT therapy exist:

  • Autologous uses a patient’s own bone marrow stem cells, which reduces the chance of the body rejecting the transplant.
  • Allogeneic uses a healthy donor’s bone marrow stem cells, which carries the risk graft-versus-host-disease (the new immune system attacks the patient’s own body). However, the new immune system also attacks any residual leukemia, so there may be less chance of relapse. 
Research: BMT/SCT in LGL Leukemia

A recent clinical study of stem cell transplants in a limited number of T-LGL leukemia patients reported death in about 40 percent of patients receiving autologous or allogeneic transplant treatment. The patients who survived were still alive at the time of the report’s publication. However, the study used a very small sample size; more research is needed. 

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