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Chronic lymphocytic leukemia


Title




Other Names:
Leukemia, lymphocytic, chronic; Chronic B-Cell Lymphocytic Leukemia; B Cell Chronic Lymphocytic Leukemia
Categories:
Rare Cancers

Summary Summary


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Chronic lymphocytic leukemia (CLL) is a type of cancer of the white blood cells (lymphocytes). Early signs and symptoms may include swollen lymph nodes, fatigue, weight loss, fever, night sweats and/or frequent infections. CLL usually occurs in adults around the age of 70 and begins in the bone marrow and then spreads to the blood. Over time, CLL may also spread to the lymph nodes and other organs, including the liver, spleen and lungs. The severity and outcome of CLL depends on many factors. The underlying cause is thought to be a combination of genetic and other unknown factors. It usually occurs in people with no family history of the condition, but familial cases have been reported. CLL is diagnosed based on the symptoms and various blood tests. Treatment options depend on many factors, including the stage of the condition, blood cell counts, and whether the CLL has recurred (come back).[1][2][3][4]
Last updated: 6/12/2020

Symptoms Symptoms


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The following list includes the most common signs and symptoms in people with chronic lymphocytic leukemia (CLL). These features may be different from person to person. Some people may have more symptoms than others and symptoms can range from mild to severe. This list does not include every symptom or feature that has been described in this condition.

Signs and symptoms may include:[1][4]
  • Enlarged lymph nodes
  • Enlarged liver and/or spleen
  • Night sweats
  • Fever
  • Fatigue
  • Loss of appetite
  • Weight loss
  • Frequent infections
  • Abnormal bruising
Some people with CLL have no symptoms at the time of diagnosis, and CLL is found by chance during a routine blood test. Symptoms usually develop slowly, although CLL can progress quickly in rare cases. Bone marrow changes may lead to low blood oxygen (anemia) and a low platelet count (thrombocytopenia). The severity of CLL may depend on genetic and other factors, including the presence of underlying health conditions.[3] 

It is thought that CLL occurs following a pre-cancerous condition known as monoclonal B-cell lymphocytosis (MBL). MBL is present in about 10 percent of healthy adults. Only a small percentage of people with MBL develop CLL.[3]
Last updated: 6/12/2020

This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.

Showing of 4 |
Medical Terms Other Names
Learn More:
HPO ID
Percent of people who have these symptoms is not available through HPO
Autosomal dominant somatic cell mutation 0001444
Cellular immunodeficiency 0005374
Chronic lymphatic leukemia 0005550
Somatic mutation 0001428
Showing of 4 |
Do you have more information about symptoms of this disease? We want to hear from you.
Last updated: 2/1/2021

Cause Cause


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The underlying cause of chronic lymphocytic leukemia (CLL) is not known. About 10% of people with CLL have a family history of this condition.[1] Other risk factors include age, exposure to pesticides or herbicides, allergic conditions, and a current hepatitis C infections.[1]


Last updated: 6/12/2020

Diagnosis Diagnosis


Listen
Chronic lymphocytic leukemia (CLL) is diagnosed through a clinical examination and specific blood tests. Sometimes CLL is first detected by chance during a routine blood test. Tests that may be used to confirm a diagnosis of CLL include a blood count, peripheral blood smear, flow cytometry, and a biopsy of the bone marrow or lymph nodes.[1][2] 
Last updated: 6/12/2020

Treatment Treatment


Listen
Treatment for chronic lymphocytic leukemia (CLL) depends on many factors. These include the symptoms, the stage of the CLL, other diseases that are present, and whether the CLL has come back. People with early stage CLL who have no symptoms may simply be closely monitored by their doctor without any treatment. Treatment options may include, chemotherapy, radiation therapy, and targeted therapy (drugs used to find and kill cancer cells without hurting normal cells). In younger patients, bone marrow or stem cell transplantation may be an option. More information about the treatment of CLL can be viewed on the National Cancer Institute's page about CLL treatment.[2][3][4]

Specialists involved in the care of someone with CLL may include:
  • Medical oncologist
  • Radiation oncologist
  • Hematologist 
  • Surgeon
Last updated: 6/12/2020

FDA-Approved Treatments

The medication(s) listed below have been approved by the Food and Drug Administration (FDA) as orphan products for treatment of this condition. Learn more orphan products.

  • Ofatumumab (Brand name: Arzerra) - Manufactured by Novartis Pharmaceuticals Corporation
    FDA-approved indication: Arzerra in combination with chlorambucil, for the treatment of previously untreated patients with chronic lymphocytic leukemia (CLL) for whom fludarabine-based therapy is considered inappropriate. Also Arzerra in combination with fludarabine and cyclophosphamide for the treatment of patients with relapsed chronic lymphocytic leukemia (CLL).
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
  • Acalabrutinib (Brand name: CALQUENCE) - Manufactured by AstraZeneca
    FDA-approved indication: CALQUENCE is indicated for the treatment of adult patients with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL).
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
  • Alemtuzumab (Brand name: Campath) - Manufactured by Genzyme Corporation
    FDA-approved indication: The treatment of patients with B-cell chronic lymphocytic leukemia who have been treated with alkylating agents and who have failed fludarabine therapy.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
  • PI3K-delta and PI3K-gamma inhibitor (Brand name: Duvelisib) - Manufactured by Verastem, Inc.
    FDA-approved indication: September 2018, PI3K-delta and PI3K-gamma inhibitor (Duvelisib) was approved for the treatment of adult patients with relapsed or refractory chronic lymphocytic leukemia (CLL), small lymphocytic lymphoma (SLL), or follicular lymphoma after at least two prior therapies.
    National Library of Medicine Drug Information Portal
  • Buffered intrathecal electrolyte/dextrose injection (Brand name: Elliotts B Solution) - Manufactured by QOL Medical, LLC
    FDA-approved indication: For the intrathecal administration of methotrexate and cytarabine for the prevention or treatment of meningeal leukemia and lymphocytic lymphoma.
    National Library of Medicine Drug Information Portal
  • Fludarabine phosphate (Brand name: Fludara) - Manufactured by Berlex Laboratories, Inc.
    FDA-approved indication: Treatment of chronic lymphocytic leukemia (CLL), including refractory CLL.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
  • Fludarabine phosphate oral tablets (Brand name: Fludarabine (oral)) - Manufactured by Antisoma
    FDA-approved indication: Treatment of adult patients with B-cell chronic lymphocytic leukemia (CLL) whose disease has not responded to or has progressed during or after treatment with at least one standard alkylating-agent containing regimen.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
  • Obinutuzumab (Brand name: Gazyva) - Manufactured by Genentech, Inc.
    FDA-approved indication: Treatment of patients with previously untreated chronic lymphocytic leukemia in combination with chlorambucil.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
  • Ibrutinib (Brand name: Imbruvica) - Manufactured by Pharmacyclics, Inc.
    FDA-approved indication: Treatment of patients with chronic lymphocytic leukemia (CLL) who have received at least one prior therapy. Treatment of patients with chronic lymphocytic leukemia with or without 17p deletion.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
  • Rituximab and hyaluronidase human (Brand name: Rituxan Hycela) - Manufactured by Genentech, Inc.
    FDA-approved indication: Treatment of adult patients with previously untreated and previously treated CLL in combination with fludarabine.
    National Library of Medicine Drug Information Portal
  • Bendamustine hydrochloride (Brand name: Treanda) - Manufactured by Cephalon, Inc.
    FDA-approved indication: Treatment of patients with chronic lymphocytic leukemia.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
  • Venetoclax (Brand name: Venclexta) - Manufactured by AbbVie Inc.
    FDA-approved indication: June 2018, venetoclax (Venclexta) received expanded approval for the treatment of patients with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL), with or without 17p deletion, who have received at least one prior therapy.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
  • idelalisib (Brand name: Zydelig) - Manufactured by Gilead Sciences, Inc
    FDA-approved indication: (1) Relapsed chronic lymphocytic leukemia (CLL), in combination with rituximab, in patients for whom rituximab alone would be considered appropriate therapy due to other co-morbidities; and (2) Relapsed small lymphocytic lymphoma (SLL) in patients who have received at least two prior systemic therapies; and (3) Relapsed follicular B-cell non-Hodgkin lymphoma (FL) in patients who have received at least two prior systemic therapies.
    National Library of Medicine Drug Information Portal

Statistics Statistics


Listen
It is estimated that about 4 in 100,000 people are diagnosed with chronic lymphocytic leukemia (CLL) every year in the US and Europe. The exact number of people living with CLL is unknown.[2][3]
Last updated: 6/12/2020
Do you have updated information on this disease? We want to hear from you.

Find a Specialist Find a Specialist


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If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

  • To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by the American College of Medical Genetics and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from MedlinePlus Genetics.

Research Research


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Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Chronic lymphocytic leukemia. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Organizations Organizations


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Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

  • CLL Society
    PO Box 1390
    Claremont, CA 91711
    E-mail: https://cllsociety.org/contact-us/
    Website: https://cllsociety.org/
  • Leukaemia Foundation
    E-mail: info@leukaemia.org.au
    Website: http://www.leukaemia.org.au/
  • Leukemia and Lymphoma Society
    3 International Drive, Suite 200
    Rye Brook, NY 10573
    Toll-free: 1-(800) 955-4572 (patients and families)
    Telephone: 1-(888) 557-7177 (general)
    E-mail: https://www.lls.org/content/contact-us
    Website: https://www.lls.org/
  • Lymphoma Research Foundation
    Wall Street Plaza
    88 Pine Street, Suite 2400
    New York, NY 10005
    Toll-free: 1-800-500-9976
    Telephone: +1-212-349-2910
    Fax: +1-212-349-2886
    E-mail: helpline@lymphoma.org
    Website: https://www.lymphoma.org/

Organizations Providing General Support

  • American Cancer Society
    250 Williams Street NW
    Atlanta, GA 30329
    Toll-free: 1-800-227-2345
    Website: https://www.cancer.org
Do you know of an organization? We want to hear from you.

Living With Living With


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Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Financial Resources

  • Patient Access Network Foundation (PAN Foundation) has Assistance Programs for those with health insurance who reside in the United States. The disease fund status can change over time, so you may need to check back if funds are not currently available. 

Learn More Learn More


Listen

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • The American Cancer Society provides information on Chronic lymphocytic leukemia. Please click on the link to access this resource.
  • The Leukemia and Lymphoma Society has an information page on Chronic lymphocytic leukemia. Click on the link to view this information page.
  • MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
  • The Merck Manual provides information on this condition for patients and caregivers. 
  • The National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public.
  • The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

  • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
  • The Merck Manual for health care professionals provides information on Chronic lymphocytic leukemia.
  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine. 
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Chronic lymphocytic leukemia. Click on the link to view a sample search on this topic.

GARD Answers GARD Answers


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Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know.

Have a question? Contact a GARD Information Specialist.

References References


  1. Hallek M, Shanafelt TD, Eichhorst B. Chronic lymphocytic leukaemia. Lancet. 2018; 391(10129):1524-1537. https://pubmed.ncbi.nlm.nih.gov/29477250.
  2. Hallek M. Chronic lymphocytic leukemia: 2020 update on diagnosis, risk stratification and treatment. Am J Hematol. 2019; 94(11):1266-1287. https://pubmed.ncbi.nlm.nih.gov/31364186.
  3. Bosch F, Dalla-Favera R. Chronic lymphocytic leukaemia: from genetics to treatment. Nat Rev Clin Oncol. 2019; 16(11):684-701. https://pubmed.ncbi.nlm.nih.gov/31278397.
  4. Milne K, Sturrock B, Chevassut T. Chronic Lymphocytic Leukaemia in 2020: the Future Has Arrived. Curr Oncol Rep. 2020; 22(4):36. https://pubmed.ncbi.nlm.nih.gov/32172299.
Do you know of a review article? We want to hear from you.
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rare disease research!
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