Chronic Lymphocytic Leukemia (CLL)
Experiencing common symptoms such as fever, fatigue and night sweats can be linked to many different health issues. Understandably, Chronic Lymphocytic Leukaemia (CLL) is probably not the first condition to come to mind, so when you receive the diagnosis, it is normal to experience shock, disbelief and anxiety.
Each person with CLL experiences the disease differently – some need urgent treatment while others experience a slow progression of the cancer. Understanding CLL and its treatments can help you make informed decisions, tailor your treatment to your personal needs, and overall, better prepare you for life with CLL.
What is Chronic Lymphocytic Leukaemia (CLL)?
Chronic Lymphocytic Leukaemia (CLL) is one of the most common types of leukaemia among adults. It is usually a slow-growing cancer of the blood and bone marrow that occurs when the bone marrow, the spongy material inside bones, produces too many lymphocytes, a certain type of white blood cell, that are not fully developed and don’t function properly.1 CLL is sometimes used as an overarching term that includes Small Lymphocytic Lymphoma (SLL), a nearly identical disease, where cancerous cells are found more commonly in the lymph nodes.2
Under normal conditions, lymphocytes produce antibodies that help the body fight infection and disease. In people with CLL, the abnormal lymphocytes being produced can build up over time in the bone marrow. This leaves less space for normal white blood cells, red blood cells and platelets to develop, which is what causes many of the symptoms that patients experience.2
As with other types of cancer, CLL is categorised in different stages to indicate the severity of the disease and how far it has spread. For CLL, there are two clinical staging systems:3
- Rai system: used more often in the United States. This system is based on lymphocytosis, a condition in which there is an increase in white blood cells, called lymphocytes, in the blood stream.4 The patient must have a high number of lymphocytes in their blood and bone marrow that isn't linked to any other cause (like infection). Rai stages range from 0 to IV.3
- Binet system: used more widely in Europe.3 In this system, CLL is classified by the number of affected lymphoid tissue groups (neck lymph nodes, groin lymph nodes, underarm lymph nodes, spleen, and liver) and by whether or not the patient has anaemia (too few red blood cells) or thrombocytopenia (too few blood platelets). The Binet stages are A, B and C.
What are the symptoms of Chronic Lymphocytic Leukemia
CLL tends to progress slowly and many people with CLL may not experience symptoms for years. Symptoms of CLL can also be linked to many other conditions, making it difficult to self-detect the disease without proper testing.
The most common symptoms include:1
- Frequent infections
- Anaemia: persistent tiredness, shortness of breath, and pale skin
- Weight loss
- Night sweats or chills
- Fever
- Bleeding and bruising more easily than normal
- Swelling and discomfort in your belly
- Swollen glands in in the neck, armpits and groin
CLL is often detected during blood tests for other health problems or routine check-ups, as the cancerous cells can be easily detected in the blood. Sometimes, a bone marrow aspiration (removing fluid) or biopsy (removing bone and marrow) is performed to determine prognosis and whether a treatment is working.4
Unlike bowel or breast cancer, it’s not common practice to routinely screen for CLL, but it is important to contact your doctor as soon as you experience any of the mentioned symptoms or any other changes in your health.
How common is Chronic Lymphocytic Leukemia (CLL)?
CLL is the most common type of leukaemia in adults. Globally, an estimated 300,000 people are diagnosed with leukaemia every year. CLL accounts for 25%5 of all leukaemia diagnoses in the Western world.
As with all cancers, the cause for CLL is still unknown, and few risk factors have been identified:6
- Age: the disease occurs most often in older adults with an average age of 70.
- Race: Caucasian people are more likely to develop CLL.
- Family history: a history of leukaemia in the family can increase the risk of developing CLL.
- Exposure to chemicals: certain herbicides and insecticides have been linked to the development of CLL.
Treatment and Care
Each person’s experience of CLL can be very different. Some may never require treatment, while others need treatment immediately after CLL has been detected.7 Unfortunately, there is currently no cure for CLL, but the disease is manageable with a treatment plan tailored to your unique situation.
Treatment largely depends on how far the cancer has progressed. Your doctor will determine the prognosis and treatment plan after staging the disease.
Treatment may not be recommended when the cancer is in an early stage and you do not have any symptoms at all. CLL develops very slowly. Symptoms may not show for years, and treatment can cause unpleasant side effects. Instead, monitoring the disease with regular blood tests may be recommended – this is known as ‘watch and wait’.
If symptoms do develop and your condition worsens, different treatment strategies are available:8
- Targeted non-chemo agents
- Stem cell or bone marrow transplant
- Radiotherapy
- Chemotherapy
- Blood transfusion: to provide more blood cells and platelets
- Surgery: to remove the spleen if it is enlarged and causing complications8
- Immunotherapy (often in combination with chemotherapy)9
It is important to inform yourself as much as possible about the recommended treatments and the possible side effects, to make a decision that suits your needs best and offers you the best quality of life. Don’t hesitate to bring up any concerns and ask your doctor as many questions as possible. If you feel it’s necessary, don’t be shy about asking for a second opinion.
It is possible that after considering your options, you choose not to have treatment. In this case, your medical team would focus on palliative care, making sure you are as comfortable as possible.
Living with Chronic Lymphocytic Leukemia (CLL)
Experiencing complex emotions such as shock, anxiety, anger, disbelief and dejection when diagnosed with CLL is normal. It is also normal to have questions and concerns. It’s important to feel as informed as possible about your condition and possible treatments, so you can make a decision with which you feel comfortable.
Remember to look after not just your physical, but also your mental health. Symptoms and the effects of treatment for CLL can have a huge impact on your everyday life. Your daily routine, socialising, and going to work may become difficult, which can take an emotional and mental toll. The fact that treatment for CLL commonly starts with a ‘watch and wait’ approach, could make you feel like not enough is being done and increase anxiety.
Talk to loved ones and be open about how you feel and how your diagnosis is affecting you. You can also confide in your doctor, who can advise you on patient support groups, trained counsellors and social services, and explain your treatment plan to you in detail.
CLL affects your white blood cells, making you more susceptible to infections. Wash your hands regularly, talk to your doctor about vaccinations that can protect you, and take as many preventive steps as you can to avoid infection.
Treatment can also leave you feeling tired and ruin your appetite. Try to stay active and eat a well-balanced, healthy diet to keep up your strength and prevent weight loss. Avoid certain foods such as uncooked fish and meat to avoid possible infection and nausea.10
What to ask your doctor?
The list below includes example questions to help start a conversation with your health care provider. There may be other relevant questions based on your symptoms, stage, and medical history that are not listed here.
- How advanced is my disease, and what can I expect?
- What are the treatment options? How much time do I have to decide?
- How long will the treatment take?
- What are the possible side effects? How can I best manage them?
- What happens if the treatment doesn’t work?
- How will this affect my everyday life?
- What symptoms or side effects should I tell you about right away?
- Can I get a second opinion?
- Are there any clinical trials I can join?
- Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed or distressed? Can I be referred to patient support groups?
- …
Glossary
- Anaemia: a condition in which you lack enough red blood cells to carry oxygen to your body’s tissues.
- B cell: a type of white blood cell involved in the production of antibodies.
- Blood count: a routine blood test to estimate the number and type of cells circulating in the blood.
- Lymphocytes: white blood cells that are the body’s main types of immune cells.
- Platelets: tiny blood cells that help the body form clots to stop bleeding.
- Stem cells: the most primitive cells in the bone marrow from which various types of blood cells are derived.
Patient advocacy groups and external sources
This website is developed exclusively by Janssen Pharmaceutica NV. Please note that the patient advocacy groups, and external sources listed below are an additional and independent source of information you might find useful. These groups and sources were not involved in the creation of this website and do not endorse its content in any way.
Revive blood & cancer association
Contact your local patient association in Lebanon
Barbara Nassar For Cancer Patient Support
Contact your local patient association in Lebanon
European Leukaemia Network (ELN)
The European Leukaemia Network is a non-profit organisation dedicated to improving the care of people with leukaemia across Europe.
Make Blood Cancer Visible
To support patients and their families, Janssen launched Make Blood Cancer Visible, a campaign asking people impacted by blood cancer (patients, caregivers, family members, healthcare professionals) to make themselves and their blood cancer more visible by sharing images or personal stories of their journey with blood cancer, thereby increasing the visibility of blood cancers throughout Europe.