Chronic Lymphocytic Leukemia (CLL) is a form of blood cancer affecting the abnormal B lymphocytes that can infiltrate the blood, bone marrow, lymph nodes, spleen and other organs. In many cases CLL is a slow-growing disease and does not cause symptoms for many years. In time, however, the disease can become active requiring treatment.

Nursing care of the patient with CLL extends beyond that of controlling abnormal cancer cells and is crucial in educating patients and their families to clinical course of the disease, symptom prevention, treatment side effect management and quality of life issues. The nurse is frequently the principal healthcare worker who accompanies the CLL patient from time of diagnosis, through periods of active disease surveillance or treatment and during long periods of inactive disease.

Understanding the Patient’s Journey After Diagnosis

However, as with most cancers, the time from diagnosis to treatment can vary and often depends upon the stage of cancer at the time of diagnosis. For patients with early-stage CLL and who are asymptomatic, there is often no urgent need for treatment and are placed on active surveillance.

Patients with CLL are placed on active surveillance or watch and wait during their early stage, asymptomatic CLL. Their health care team follows their blood counts, lymph nodes, spleen size and symptoms for progression of their disease. The nurse supports the patient and their family through this uncertain time by explaining the purpose of each assessment, lab value and follow-up appointment.

Nursing support is important in helping patients and their families understand the active surveillance process and the importance of attending scheduled appointments, having blood tests and reporting any new or worsening symptoms.

Recognizing When Treatment for CLL May Be Needed

Additional factors are also used for deciding treatment for CLL, such as developing symptoms like feeling very tired, losing weight, having fever, night sweats, or large lymph nodes that become worse. A drop in blood count can also cause complications and may mean that the patient with CLL should start treatment.

An increased lymphocyte count can be part of the assessment but does not in itself mean treatment needs to be initiated. Nursing assessments can identify changes in a patient’s clinical situation and need to have these documented and communicated to other members of the health care team. Helps identify symptoms and communicate these to members of the healthcare team.

The Nursing Role During Treatment for CLL

Today, CLL is treated with a variety of targeted small molecule drugs that specifically target protein, signaling pathways or other fundamental structures that allow the CLL cancer cells to survive. These therapies include BTK inhibitors such as ibrutinib, acalabrutinib or zanubrutinib and the BCL-2 inhibitor venetoclax.

Nursing care can differ from drug treatment. For example, the patient and his/her relatives have to be explained by the nurse how and when to take the drug(s), which symptoms must be reported, and why certain lab tests or clinical assessments are needed.

In consideration of these factors, CLL treatments are given in different combinations for variable periods of time. In addition to targeted agents, typical regimes for CLL also include chemotherapy with or without immunotherapy.

Monitoring Treatment-Related Effects

More recently developed targeted treatments for CLL can cause a variety of other treatment-related effects. Early identification of the signs and symptoms of complications and an explanation to patients of the changes to their health which require reporting to healthcare providers as soon as possible are key aspects of the care provided by the nursing team.

The extent of monitoring during treatment with targeted agents for CLL depends on the specific drug or combination used and can include blood counts, measurement of blood pressure, assessment of cardiac function, measurements of kidney function, liver function tests and assessment for signs of infection. The patient can be advised to seek prompt medical attention if any new or worsening symptoms occur.

For venetoclax therapy to be initiated, the patient is advised slowly to increase the dose within the first week to allow for the clearance of the cancer cells, to prevent tumor lysis syndrome.

Prevention and Supportive Care

CLL can affect the immune system of patients and thus increase their risk of serious infections. Also, during treatment of CLL patients’ immune systems can be affected in different ways. Thus, in addition to treatment of CLL itself, infection prevention and early detection and treatment are crucial parts of supportive care.

Infection can be best prevented and early treated by the nursing team in CLL cases by educating the patients and their families on the signs of infection such as fever, cough, weakness or fatigue and other unusual symptoms. Patients can also be advised to comply with the healthcare team recommendations regarding vaccination and other preventive measures to keep them healthy.

Supportive care for patients with CLL involves more than managing to treat infections. The CLL patient needs assistance with fatigue, proper nutrition and hydration. Also, the patient with CLL needs to understand the medications that are prescribed to him/her. The CLL patient also needs to cope with the challenges of living with chronic blood cancer and trying to manage day to day activities.

Communication and Patient Education

Clear communication throughout the patients’ journey of CLL and its treatment is key to their care. Many patients will encounter complex medical terms, be faced with many treatment options, explain lab results and may experience many changes to their treatment and their health throughout their CLL journey.

Nurses can provide understanding and support to patients and their families through clarification of terms and treatment information, reinforcement of physician’s instructions, and encouragement of patients’ rights to question the patient’s treatment plan and potential side effects. By helping patients recognize the signs of complications and the side effects of therapy, we are able to help them manage their disease and become more involved in their care.

Supporting Quality of Life

There are lots of factors that are important to manage when living with CLL. Not just the clinical aspect of having CLL and getting the best possible treatment for cll but also trying to manage to have the best possible quality of life while living with CLL.

Even within the option of continuous treatment, there are various methods of therapy that may be preferred by individuals for differing periods of time. Patients should discuss their treatment preferences with their healthcare team to determine the best option for individual circumstances.

The patient is supported in their care by the nurse, preparing them for their treatment and clinic appointments and helping them to identify issues before they become problems. The patient is also supported by the nurse in relation to their on-going daily lives and in expressing their concerns.

Individualized CLL Care

The individual with CLL will have different needs and a different disease course than another individual with CLL. Previous treatment, molecular characteristics of the CLL, other medical problems, age, medications, symptoms and individual preferences all can affect the individual’s management.

The comprehensive management of CLL involves the individualized care of patients by not only nurses but also hematologists, oncologists, and other healthcare professionals such as pharmacists. Individualized, quality care can be provided to the patient and their families by all healthcare team members if there is open communication.

Looking Beyond Diagnosis

For the person living with CLL, they may be under active surveillance or on treatment for their cll. Throughout the disease course, the person living with CLL will have nursing professionals thereto to help manage active CLL and provide ongoing education and monitoring for the best possible quality of life.

We have many different methods for managing CLL that are currently available and evolving. The selection and management of CLL and its treatment is an individualized process.

If you have been diagnosed with CLL then discussing your CLL treatment with a qualified hematologist or oncologist is key. However, your nursing team can complement your treatment for CLL by giving you and your family information about your CLL and your treatment for cll as well as to monitor you and to communicate with you and your other healthcare providers giving you practical support along the way to help you to manage your CLL and to try to achieve the best quality of life while you are living with CLL.

Disclaimer: This article is intended for informational and educational purposes only and should not be considered medical advice. For an accurate diagnosis, treatment plan, and management of CLL, please consult a qualified healthcare professional.

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