About CLL

What is Chronic Lymphocytic Leukemia?

Chronic lymphocytic leukemia (CLL) is usually a slow-growing type of B-cell cancer found in the blood and lymph nodes. It is also a type of non-Hodgkin lymphoma. While it starts in white blood cells in bone marrow, CLL can spread to other parts of the body over time.1,2

Facts about CLL:

  • An estimated 15,000 people (usually adults over the age of 50) are diagnosed with CLL each year in the United States2
  • CLL is slightly more common in men than in women, although it is not known why3
  • Parents, siblings, or children of patients with CLL are 3 to 4 times more likely to develop the disease, but the risk is still very small4

What is the Role of B Cells in CLL?

CLL is a B-cell cancer.2 A B cell is a type of white blood cell (lymphocyte) that forms from a stem cell in the bone marrow. B cells play an important role in fighting infection.5

B-cell cancers, such as CLL, happen when there is an interruption in the normal life cycle of a B cell. Once they reach the end of their life cycle, healthy B cells die off in what is known as cell apoptosis to make room for new B cells.6

Instead of being replaced by healthy cells, cancerous B cells accumulate in the bone marrow, bloodstream, lymph nodes, and other parts of the body and crowd out healthy blood cells.6

Causes and Risk Factors

The exact cause of CLL is unknown.7 However, many people with CLL often have a change in at least one chromosome, or strand of genetic material. This change might be a piece missing from the chromosome, an extra piece, or a defect.7

One example of a change in a chromosome in CLL is del 17p, which means that a piece of the 17th chromosome is missing or deleted. Patients with del 17p often have a form of CLL that is more difficult to treat.8

Signs and Symptoms

Symptoms generally develop over time.9 Approximately a third of people with CLL will live for years without experiencing symptoms.10 The disease is often discovered during routine blood testing as part of an annual physical or an exam for an unrelated condition.9

  • People who do have symptoms may feel weak and tired11; they may be short of breath during their normal daily routines9
  • They may suffer from weight loss, loss of appetite, fever, and night sweats11
  • They are also at an increased risk for infections due to their weakened immune system11

Diagnosis and Treatment

If you have symptoms of CLL, your doctor will first perform a physical exam and test your blood for the disease. This will be followed by other tests to help determine the best course of treatment for you. It is important to discuss all options with your doctor.

Examples of tests include12:

  • Testing your bone marrow
  • Flow cytometry to identify the cell type

Treatment options include:

  • Chemotherapy—Medications that are given either orally, by injection, or by infusion to destroy or control cancer cells12,13
  • Immunotherapy (including monoclonal antibodies)—Medications that help the body’s immune system fight cancer12
  • Kinase inhibitors—Medications that block the activity of a protein called a kinase. A kinase can tell leukemia cells to divide and help them survive. By blocking this protein, kinase inhibitors can address changes inside of cells that may cause them to become cancerous12

New Hope for People With CLL

Today, there are new treatments that may provide renewed promise and hope. Treatment of CLL is advancing every day. New treatment options—ones that have been FDA approved or are in clinical trials—offer hope that CLL can be better controlled.

Oral medicines (pills or capsules), intravenous medications (given directly into the bloodstream), and new combinations of treatments are being studied, and the results are encouraging. In some studies with experimental treatments, patients experienced significant remission in their disease.14

About CLL

Scientists have learned how to disrupt certain pathways in the cancer cells. Disrupting these pathways can encourage defective white blood cells to die or stop growing, interfere less with normal blood cells, and not collect in the lymph nodes and other organs.

For patients who have been treated for CLL before or whose disease has progressed, new treatments are available.

As with any medical decision, it is important to discuss all treatment options with your doctor or healthcare provider.

You Are Not Alone

Now is an important time to look to your healthcare providers and caregivers for support. There are also plenty of resources available if you would like to learn more about CLL. Start by visiting the following websites*:

The American Cancer Society (CLL)

Cancer Care (CLL)

Cancer Support Community (General Cancer Information)

Leukemia and Lymphoma Society (CLL)

Lymphoma Research Foundation (CLL)

* These organizations are an incomplete listing of cancer support organizations and are not controlled by, endorsed by, or affiliated with Pharmacyclics, LLC, or Janssen Biotech, Inc. The list is meant for informational purposes only and is not intended to replace your healthcare professional’s medical advice. Ask your doctor or oncology nurse educator any questions you may have about your cancer or treatment plan.

Glossary of Terms

Here are the definitions of terms you may come across as you learn more about CLL:

Apoptosis: A programmed sequence of events leading to the death of cells that are old, unnecessary, and/or unhealthy. Too much or too little apoptosis can play a role in certain diseases. For example, in leukemia, cells that should be killed off are not. In Parkinson’s disease, too many cells are killed off.

Chromosomes: Threadlike parts inside cells that carry hereditary information. Chromosomes are made up of protein and DNA.

Controlled: When treatment by a doctor relieves symptoms and keeps CLL from getting worse. People with controlled CLL can live a long time.15

Cytometry: The counting and measuring of cells, particularly blood cells, with a device.

Kinase inhibitor: Blocks the activity of a protein called a kinase, which can tell leukemia cells to divide and help them survive. By blocking this protein, a kinase inhibitor can address changes inside of cells that are causing them to become cancerous.12

Leukemia: Cancer that starts in blood-forming tissue such as the bone marrow. It causes production of large numbers of abnormal blood cells.

Lymph nodes: Small immune system organs that store the white blood cells until they are needed to fight off disease. Lymph nodes are scattered around your body in places such as the base of the neck, groin, and armpits.

Lymphocytes: White blood cells that help the body fight disease. The two main types are B cells and T cells. B cells make antibodies that attack bacteria and toxins. T cells attack cells that have been taken over by viruses (such as HIV) or have become cancerous.

Progressed: When CLL becomes worse. Symptoms become more serious, and signs of the disease increase.

Remission: When signs of CLL go away, it is called “total remission.” When signs of CLL are reduced by at least 50%, it is called “partial remission.”16

White blood cells: One of the main parts of blood. White blood cells fight disease. White blood cells are made in the bone marrow and wait in the lymph nodes until they are needed.

References:
  1. What is CLL? American Cancer Society Web site. http://www.cancer.org/cancer/leukemia-chroniclymphocyticcll/detailedguide/leukemia-chronic-lymphocytic-what-is-cll. Accessed October 15, 2014.
  2. Overview of chronic lymphocytic leukemia/small lymphocytic lymphoma. In: Coleman M, ed. Understanding CLL/SLL: A Guide for Patients, Survivors and Loved Ones. http://www.focusoncll.org/sites/all/themes/focusoncll/images/CLL_Info_Booklet.PDF. Accessed October 15, 2014.
  3. What are the risk factors for CLL? American Cancer Society Web site. http://www.cancer.org/cancer/leukemia-chroniclymphocyticcll/detailedguide/leukemia-chronic-lymphocytic-risk-factors. Accessed October 15, 2014.
  4. Chronic lymphocytic leukemia: causes and risk factors. Leukemia and Lymphoma Society Web site. http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cll.pdf. Accessed October 15, 2014.
  5. B cell [definition]. National Cancer Institute Web site. http://www.cancer.gov/dictionary?cdrid=45611. Accessed October 15, 2014.
  6. Causes of CLL. In: Coleman M, ed. Understanding CLL/SLL: A Guide for Patients, Survivors and Loved Ones. http://www.focusoncll.org/sites/all/themes/focusoncll/images/CLL_Info_Booklet.PDF. Accessed October 15, 2014.
  7. Do we know what causes CLL? American Cancer Society Web site. http://www.cancer.org/cancer/leukemia-chroniclymphocyticcll/detailedguide/leukemia-chronic-lymphocytic-what-causes. Accessed October 15, 2014.
  8. Jain N, O’Brien S. Chronic lymphocytic leukemia with deletion 17p: emerging treatment option. Oncology. 2012;26(11):1067,1070. http://www.cancernetwork.com/oncology-journal/chronic-lymphocytic-leukemia-deletion-17p-emerging-treatment-options. Accessed October 15, 2014.
  9. Chronic lymphocytic leukemia: signs and symptoms. Leukemia and Lymphoma Society Web site. http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cll.pdf. Accessed October 15, 2014.
  10. Signs and symptoms of CLL. In: Coleman M, ed. Understanding CLL/SLL: A Guide for Patients, Survivors and Loved Ones. http://www.focusoncll.org/sites/all/themes/focusoncll/images/CLL_Info_Booklet.PDF. Accessed October 15, 2014.
  11. Signs and symptoms of chronic lymphocytic leukemia. American Cancer Society Web site. http://www.cancer.org/acs/groups/cid/documents/webcontent/003111-pdf.pdf. Accessed October 15, 2014.
  12. How is chronic lymphocytic leukemia treated? American Cancer Society Web site. http://www.cancer.org/acs/groups/cid/documents/webcontent/003111-pdf.pdf. Accessed October 15, 2014.
  13. Rare disease report: mantle cell lymphoma: treatment. National Organization for Rare Disorders Web site. https://www.rarediseases.org/rare-disease-information/rare-diseases/byID/1114/viewFullReport. Accessed September 23, 2014.
  14. Goodman A. Mounting success in trials of genetically engineered T cells to treat leukemias and lymphomas. The Asco Post™ Web site—January 15, 2014;5(1). http://www.ascopost.com/issues/january-15,-2014/mounting-success-in-trials-of-genetically-engineered-t-cells-to-treat-leukemias-and-lymphomas.aspx. Accessed October 22, 2014.
  15. Statistics and outlook for chronic lymphocytic leukaemia (CLL). Cancer Research UK Web site. http://www.cancerresearchuk.org/about-cancer/type/cll/treatment/statistics-and-outlook-for-chronic-lymphocytic-leukaemia#cll. Accessed October 22, 2014.
  16. Chronic lymphocytic leukemia frequently asked questions. Chronic Lymphocytic Leukemia Frequently Asked Questions Web site. http://www.cllfaq.info/treatment.html. Accessed October 22, 2014.