Information Re: COVID-19 (Novel Coronavirus) For Patients With Hairy Cell Leukemia

For Patients and Families Who Visit Our Website: We developed the following information in consultation with experts at our HCL Centers of Excellence. We will update this page as additional information is available.

Risks with Coronavirus: Patients with Hairy Cell Leukemia

Recent events with the coronavirus pandemic have challenged the entire world to protect our vulnerable patients with a compromised immune system. Patients with hairy cell leukemia have a compromised immune system as a result of both the impact of the disease itself on immune function as well as side effects from the treatments for hairy cell leukemia. HCL causes not only low neutrophil counts but also low monocyte counts which result in a defective immune system. The patient’s immune system may continue to be compromised for a period of time following treatment even while in remission.

Infection represents a major threat to patients with this chronic form of leukemia. Effective treatment usually improves the blood counts and restores normal neutrophil and monocyte counts. However, the drugs used to treat hairy cell leukemia can also cause an initial decrease in the blood counts before they eventually improve. After patients have been treated with chemotherapy such as pentostatin or cladribine, there is usually a delay in recovery of the lymphoid cells that are essential for protection from infection. The risks for infection do progressively decrease over time after therapy for the leukemia.

Patients Needing Treatment for Hairy Cell Leukemia

Treating patients with hairy cell leukemia who have an active infection requires careful planning and discussion. While the standard drugs used to treat hairy cell leukemia such as pentostatin and cladribine are highly effective in achieving a remission in this disease, they can cause a temporary decline in the blood counts that are important for protecting the patient from infection. There are several alternative treatments that can achieve improvement in blood counts that are less likely to cause a decrease in the infection fighting cells. It has recently been reported that several patients with dangerously low blood counts facing active infection have been successfully improved with these newer treatments. In the current environment with a pandemic associated with the coronavirus, the physician and patient need to assess the potential benefit and danger of initiating a specific therapy.

In 2017, the Hairy Cell Leukemia Foundation with the guidance of experts in the management of hairy cell leukemia published recommendations for the management of patients with the classic form of HCL. The importance of planning for the management of infection was emphasized. However, the development of this pandemic (coronavirus) raises additional concerns about how best to protect our patients. In many circumstances, a carefully planned treatment may be needed that balances the risks of treatment against the potential concerns of delayed treatment.

Patients and Families with Hairy Cell Leukemia: Prevention of Coronavirus Exposure

At this time, there is no vaccine to protect patients from coronavirus and no effective therapy for patients who develop this viral illness. While some risk factors for poor outcome have been identified, including immunosuppression, older age, malignancy, diabetes, and other health conditions, the best approach is to avoid exposure to the coronavirus. Consequently, governments have prohibited large crowds and gatherings. They have closed schools and places where close proximity are unavoidable. Many large meetings have been postponed or cancelled. Travel has been restricted. Many individuals are now working from home if this is possible.

Patients and their families are advised to wash hands frequently and thoroughly with soap and water for at least 20 seconds. Patients who have to use public transportation to receive medical care are advised to keep hands clean with a hand cleaner, when washing with soap and water is not possible.

You should also avoid close contacts and places where crowds are present. Outside the home, you are advised to practice ‘social distancing’ and attempt to keep 6 feet (about two meters) between you and others. If family or friends have traveled from areas of local transmission or internationally, they should self-quarantine/isolate for a minimum of 14 days. If someone in your household were to have symptoms, they should be screened. If a loved one is in the hospital for any reason, it is advised to use electronic means of communication such as video chat/FaceTime and avoid visiting your loved one during this time.

Many questions are being raised by concerned patients and families. Patients are advised to contact their physician if they develop symptoms of fever (temperature > 100.4 degrees), coughing, and shortness of breath. It is also important that patients have up-to-date immunization for other infections (e.g., annual influenza immunization). While the influenza vaccine will not prevent coronavirus, it may decrease the chance of developing another concurrent illness that can also be serious and confused with the current viral threat.

Advice for Individuals with Concerns

If patients or their families have specific questions, it is always advisable to contact your primary physician.

If you need additional information, please contact the Hairy Cell Leukemia Foundation. Our staff will request advice from one or more of the many experts who specialize in the treatment of hairy cell leukemia. For patients who are needing treatment for HCL, clinical judgement will be needed to assess the urgency of treatment and the selection of the best approach to therapy. For patients already in remission, precautions to protect those with a residual compromised immune system should be considered and may require consultation.

The HCLF has identified 28 institutions globally that may provide advice and consultation. View the list of Centers of Excellence here. >>

In addition, reliable advice from the Centers for Disease Control and Prevention (CDC) is available here. >>

There is also reliable information and advice from the World Health Organization (WHO) here. >>