Chronic lymphocytic leukemia (CLL) is a type of cancer that affects the blood and bone marrow. It can progress slowly and may not cause many symptoms. Although it is treatable, it’s not considered to be curable.
In the early stages, CLL often doesn’t require treatment immediately, as studies have shown that early treatment doesn’t increase survival from the disease. However, as CLL advances, treatment may become necessary. This article will review the symptoms associated with advanced disease and possible treatment options.
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CLL: When to Treat and Not Treat Cancer
The decision to treat CLL depends on several factors, including the stage of the disease, the presence of symptoms, and the person’s overall health.
A watchful waiting approach is often used when CLL is diagnosed in the early stages, meaning close monitoring of the disease without treating it until symptoms appear or worsen. At the diagnostic stage, the person with CLL often doesn’t have any symptoms, and the side effects and risks of treatment can outweigh the benefits.
Studies have also shown that even in those with more high-risk disease, starting treatment earlier doesn’t increase their overall survival.
Treatment can become necessary when symptoms develop or the disease begins to progress. Symptoms can include:
Additionally, treatment is considered if there is a rapid increase in white blood cell count or a decrease in other blood levels, such as red blood cells and platelets. Treatment, whether watchful waiting or active treatment, is tailored to each person.
Understanding Watchful Waiting
Watchful waiting, also known as active surveillance, is commonly used in most people with CLL. During watchful waiting, blood work and checkups are typically done every three months to assess for any disease progression.
By waiting to start treatment, those with CLL can be spared the potential side effects and complications of therapies that aren’t necessary at their current stage. Although most people will eventually require treatment, about 30% of people with CLL can continue with watchful waiting and never require treatment.
Watchful Waiting and Mental Health
While watchful waiting for managing CLL is focused on monitoring the disease, it’s important to address the impact this approach may have on mental health. Some people may experience anticipatory anxiety about CLL progressing and have fear and worry about their future health.
The stress of living with a chronic illness can lead to depression and cause a sense of helplessness.
Connecting with support groups, therapists, and counselors can help cope with this chronic illness. The healthcare team managing CLL should address these concerns and help people achieve peace of mind during a watchful waiting period.
Biomarkers and Symptoms Warranting Treatment
Biomarkers (an objective measurement of something happening in the body) and symptoms that indicate a more active disease pattern guide treatment initiation for CLL.
The International Workshop on CLL has published guidelines. At least one of the following must be present to determine active CLL.
- Worsening anemia (hemoglobin less than 10 grams per deciliter) or thrombocytopenia (platelets less than 100 x 109 per liter)
- Increasing enlargement of the spleen (an abdominal organ that filters blood and stores white blood cells and platelets)
- Increasing lymph node size
- Doubling time of lymphocytes (a type of white blood cell that has become cancerous in CLL) of less than six months
- CLL involvement in other organs
- Unintentional weight loss of 10% or greater over the previous six months
- Significant fatigue
- Fever of 100.5 degrees F or higher for two weeks or more without infection
- Night sweats for a month or more without infection
Additionally, certain genetic markers, such as deletion 17p or mutation in the TP53 gene, suggest a more aggressive disease course and may require treatment sooner.
What to Do With Early CLL Without Treatment
For those with CLL who are not under active treatment, there may not be any specific steps to take to prevent the disease from progressing. However, improving overall health is important. Some factors to enhance a healthy lifestyle include:
- Avoiding tobacco use
- Eating a balanced diet
- Getting regular exercise
- Maintaining a healthy body weight
Factors such as an individual’s genetic makeup and molecular characteristics of CLL cannot be controlled.
Progressive CLL Symptoms and Stages
As CLL advances, a range of symptoms may be present. These symptoms may include:
- Abdominal pain or fullness in the abdomen from an enlarged spleen
- Chills
- Fatigue
- Fever
- Frequent or recurrent infections
- Night sweats
- Swollen lymph nodes under the skin, such as in the neck, groin, or armpits
- Weakness
- Weight loss
If someone with CLL begins to experience these or other concerning symptoms, they should contact their healthcare provider for further evaluation.
Treatment to Manage Progressive CLL
If CLL progresses to the point where treatment is indicated, a variety of treatment options are available. The goal of treatment is to manage the disease and reduce symptoms. Exactly which treatment will be ordered depends on many factors and is individualized to the person receiving them.
Treatment options can include:
- Targeted therapy
- Monoclonal antibodies
- Chemotherapy
- Clinical trials
Targeted therapies include Bruton tyrosine kinase (BTK) inhibitors and antiapoptotic protein B cell lymphoma 2 (BCL2) inhibitors. These medications target cancer cells with specific mutations. They are more likely to spare healthy cells from being damaged than systemic treatments like chemotherapy. Examples of targeted therapy include Calquence (acalabrutinib), Imbruvica (ibrutinib), and Venclexta (venetoclax).
Monoclonal antibodies target specific proteins on cancer cells, marking them for destruction by the immune system. Rituxan (rituximab) is an example of a monoclonal antibody used to treat CLL.
Chemotherapy medications, such as Fludara (fludarabine) and cyclophosphamide, work by damaging cancer cells so that they can no longer reproduce. Chemotherapy can also affect healthy cells.
Clinical trials are an option for people with CLL. Many trials examine new treatment molecules or novel combinations of treatments.
Summary
CLL is a slowly progressing cancer affecting the blood and bone marrow. It often doesn’t cause symptoms in its early stages. It is not considered curable. Early-stage CLL usually doesn’t require immediate treatment, as starting therapy early doesn’t improve survival rates.
However, as CLL advances and symptoms worsen, treatment becomes necessary. Treatment decisions are based on disease stage, symptoms, and overall health. Maintaining a healthy lifestyle and regular checkups are crucial for managing early-stage CLL.
