What you need to know about chronic lymphocytic leukemia

This medical guide is designed for educational purposes to help patients understand chronic lymphocytic leukemia. Please consult your doctor on specific questions and details about your symptoms.

CHRONIC LYMPHOCYTICLEUKEMIA

What does the bone marrow do?

• What does the bone marrow do? • What is chronic lymphocytic leukemia (CLL)? • What causes CLL?• What are the symptoms of CLL?• How is CLL diagnosed? • How is CLL treated? • Living with CLL• Frequently asked questions

Contents

The bone marrow is the spongy tissue comprising the center of large bones such as the hip or leg bones.1

The bone marrow contains blood stem cells that produce red blood cells, white blood cells, and platelets.1

Blood stem cells

Red blood cells

White blood cells

Platelets

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CHRONIC LYMPHOCYTIC LEUKEMIA

Blood stem cells: stem cells that give rise to all types of blood cells, including red blood cells, white blood cells, and platelets

Chronic Lymphocytic LeukemiaWhat you need to know about chronic lymphocytic leukemia

Spongy bone (contains blood stem cells)

Chronic Lymphocytic LeukemiaWhat you need to know about chronic lymphocytic leukemia

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The exact cause of CLL remains unknown. However, the strongest and most consistent risk factor for CLL is family history of any hematologic malignancy.2,3

Studies show that the risk of having CLL increases by 6-9 times if you have family members with CLL.4

Chronic lymphocytic leukemia (CLL) occurs when the white blood cells in the bone marrow called ‘lymphocytes’ start to grow abnormally.1

These abnormal white blood cells cannot develop properly and are not able to fight infections very well. Additionally, as the number of the abnormal white blood cells increase, there is less room for your healthy white blood cells, red blood cells, and platelets.1

What is chronic lymphocytic leukemia?

What causes CLL?

CLL

Other risk factors include:1,4,5

1Age

CLL is more common in people over 60 and is very rare in people under 40.

2Gender

Overall, CLL occurs more often in men than in women.

Exposure to certain chemicals

Exposure to some chemicals such as weed- and insect-killing substances may be linked with an increased risk of CLL.

3

Normal blood Leukemia

White blood cells Abnormal proliferation of white blood cells

Red blood cell

Platelets

CLLChronic Lymphocytic Leukemia

What you need to know about chronic lymphocytic leukemia

The most common symptoms of CLL include:6 Diagnosis of CLL7

Swollen lymph nodes(felt as lumps under the skin)

Night sweats Fatigue

Unexplained weight loss Fever Weakness

CT (computerized tomography) scan: a type of scan that uses a series of X-rays that build up a 3D picture of inside the body

Lymph nodes: small, bean-shaped glands throughout the body carrying fluid (lymph fluid), nutrients, and waste material between the body tissues and the bloodstream

MRI (magnetic resonance imaging) scan: a type of scan that uses strong magnetic fields and radio waves to produce detailed images of inside the body

PET (positron emission tomography) scan: a type of scan that uses a radioactive drug (tracer) to produce detailed 3D images of the body

Ultrasound: a type of scan that uses sound waves and their echoes to produce a picture of internal organs or masses

How is CLL diagnosed?Confirming the diagnosis may require a combination of physical examinations, laboratory tests, gene tests, and imaging tests (CT/MRI/PET scans or ultrasound).7

CLL usually does not cause any signs and symptoms in its early stages until diagnosed. Therefore, symptoms are often picked up during a blood test carried out for other reasons.6

What are the symptoms of CLL?

Physical examTo check for symptoms and signs of CLL

Bone marrow testsTo examine bone marrow samples for cancerous cells

Blood testTo check general health and white and red blood cell levels

Gene testsTo examine changes in the DNA and genetic markers indicative of CLL

Imaging tests To check the spread of cancer through detailed images of the body

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CLL

Remission: the disappearance of signs and symptoms of the disease(when a patient is in remission, disease activity cannot be detected in the body)

Spleen: an organ found in the upper left part of the abdomenthat filters the blood and helps the immune system fight infection

Chronic Lymphocytic LeukemiaWhat you need to know about chronic lymphocytic leukemia

STAGE A STAGE B STAGE C

If your symptoms are mild and thought to be low-grade, starting immediate treatment may not be necessary.In this case, your doctors may decide to wait and see until you develop symptoms, or tests show that the condition is getting worse.8

Have enlarged lymph nodes in fewer than three areas and a high white blood cell count

Have enlarged lymph nodes in tree or more areas and a high white blood cell count

Have enlarged lymph nodes or an enlarged spleen, a high white blood cell count, and a low red blood cell or platelet count

Once you develop symptoms that are severe enough for treatment, your options may include:9,10

The main goal of treatment is to help you improve your quality of life by reaching remission.

The form of treatment chosen depends on the stage of CLL, as well as other factors including your age, overall health, and benefits and risks of treatment.8

Modified from the Binet system

How is CLL treated?

ChemotherapyChemotherapy is a drug treatment, given orally or by injection, that kills cancer cells.

Biological therapy

Biological drugs help your body’simmune system fight cancer. For example, a biological drug called rituximab attacks the cancerous cells in the body so that the body’s immune system can destroy them.

Radiation therapy During radiation therapy, you are positioned on a table and a large machine directs radiation at precise points on your body to kill cancerous cells and shrink tumours. 

Stem cell transplant After cancer cells are killed with high dose chemotherapy, healthy stem cells (your own or from a donor) are injected into your body, where they can form new healthy blood cells.

Staging of CLL

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Questions

CLLChronic Lymphocytic Leukemia

What you need to know about chronic lymphocytic leukemia

1. Will treatment affect my appearance and physical image?14

Treatments like surgery, chemotherapy and radiotherapy can change the way your body looks, works or feels. The effects may vary depending on the treatment, but it is common for patients to experience hair loss, dry skin, rashes, brittle nails during treatment. However, most symptoms will disappear once treatment is completed.

2. What are common complications of CLL?15

If you have CLL, you are likely to have a weakened immune system and become vulnerable to infections because you have a lack of healthy, infection-fighting white blood cells.

1 in 10 people with CLL experience severe anaemia, and 1 in 20 people with CLL experience Richter’s syndrome, in which CLL develops into an aggressive form of cancer known as lymphoma. Psychologically, you may feel anxious and depressed because of your condition.

3. What is the outlook for patients with CLL?16

The outlook for patients with CLL depends on how advanced it is, when it’s diagnosed, how old you are when diagnosed, and your general health.

Overall, around 3 in 4 people with CLL will live at least five years after diagnosis, and many live much longer if they discover their symptoms and start treatment early on.

FrequentlyAsked

Questions

Frequently communicating with your doctor through regular check-ups to stay well informed about your symptoms and treatment.12

Eating a healthy diet, getting to and staying at a healthy weight, and limiting your alcohol intake.13

Exercising to help reduce fatigue and cope better physically and emotionally.

Studies have shown that patients who follow an exercise program tailored to their personal needs feel better and cope better.13

A diagnosis of cancer can be overwhelming. At first, you are likely to feel very upset, frightened and confused.11

While you cannot change the fact that you have cancer, you can make changes in your daily life by:

Living with CLL

CHRONIC LYMPHOCYTICLEUKEMIA

REFERENCES

1. ANational Cancer Institute. Chronic Lymphocytic Leukemia Treatment (PDQ®)–Patient Version. Available at: https://www.cancer.gov/types/leukemia/patient/cll-treatment-pdq. Accessed March 2017.

2. Lynn R. Goldin, Susan L. Slager, Neil E. Caporaso. Curr Opin Hematol. 2010;17(4):350–355.

3. David Oscier, Claire Dearden, Efrem Erem, et al. British J of Haematology. 2012;159:541–564.

4. Cancer Research UK. Chronic Lymphocytic Leukemia. Risks and causes. Available at: http://www.can-cerresearchuk.org/about-cancer/chronic-lymphocytic-leukaemia-cll/risks-causes Accessed March 2017.

5. American Society of Clinical Oncology. Leukemia. Chronic Lymphocytic. CLL: Risk Factors. Available at: http://www.cancer.net/cancer-types/leukemia-chronic-lymphocytic-cll/risk-factors Accessed March 2017.

6. American Cancer Society. Signs and symptoms of Chronic Lymphocytic Leukemia? Available at: https://www.cancer.org/cancer/chronic-lymphocytic-leukemia/detection-diagnosis-staging/signs-symptoms.html Accessed March 2017.

7. American Cancer Society. How Is Chronic Lymphocytic Leukemia Diagnosed? Available at: https://www.cancer.org/cancer/chronic-lymphocytic-leukemia/detection-diagnosis-staging/how-diagnosed.html Accessed Mar 2017.

8. NHS Choices. Treating chronic lymphocytic leukaemia. Available at: http://www.nhs.uk/Conditions/leu-kaemia-chronic-lymphocytic/Pages/Treatment.aspx Accessed March 2017.

9. National Health Service UK. Treating chronic lymphocytic leukaemia. Available at: http://www.nhs.uk/Conditions/leukaemia-chronic-lymphocytic/Pages/Treatment.aspx Accessed March 2017.

10. Mayo Clinic. Treatment. Available at: http://www.mayoclinic.org/diseases-conditions/chronic-lympho-cytic-leukemia/diagnosis-treatment/treatment/txc-20200796 Accessed March 2017.

11. Cancer Research UK. Living with chronic lymphocytic leukemia. Coping. Available at: http://www.cancerresearchuk.org/about-cancer/chronic-lymphocytic-leukaemia-cll/living-with/coping Accessed March 2017.

12. American Society of Clinical Oncology. Leukemia. Chronic Lymphocytic. CLL: Follow-Up Care. Available at: http://www.cancer.net/cancer-types/leukemia-chronic-lymphocytic-cll/follow-care Accessed March 2017.

13. American Cancer Society. Lifestyle Changes During and After Treatment for Chronic Lymphocytic Leukemia. Available at: https://www.cancer.org/cancer/chronic-lymphocytic-leukemia/after-treatment/lifestyle-changes.html Accessed March 2017.

14. Macmillan cancer support. What might happen. Available at: http://www.macmillan.org.uk/informa-tion-and-support/leukaemia/chronic-lymphocytic/coping/changes-to-appearance-and-body-image/changes-during-treatment/what-might-happen.html Accessed March 2017.

15. NHS Choices. Complications of chronic lymphocytic leukaemia. Available at: http://www.nhs.uk/Condi-tions/leukaemia-chronic-lymphocytic/Pages/Complications.aspx Accessed March 2017.

16. NHS Choices. Chronic lymphocytic leukaemia. Available at: http://www.nhs.uk/Conditions/leukae-mia-chronic-lymphocytic/Pages/Introduction.aspx Accessed March 2017.

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