National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Anaplastic large cell lymphoma


Other Names:
ALCL
Categories:
Anaplastic large cell lymphoma (ALCL) is a rare type of Non-Hodgkins lymphoma. Lymphoma is a cancer of the lymph system, part of our immune system. Non-Hodgkins lymphoma involves abnormal growth of white blood cells, either T cells or B cells. Anaplastic large cell lymphoma is an aggressive cancer that usually involves the T-cells. Cancer cells in ALCL can be identified by their appearance under the microscope and by the presence of a tumor marker called CD30 or Ki-1.[1][2]

There are two types of ALCL, a type that affects mainly the skin (cutaneous ALCL) and a type that affects other body organs (systmic ALCL). Systemic ALCL also has two types, ALK-positive (anaplastic lymphoma kinase) and ALK-negative. ALK-positive ALCL occurs more often in children and young adults. ALK-negative ALCL tends to occur in older adults.[2][3]

The symptoms of cutaneous ALCL include red skin lesions that break open and do not heal. Sometimes cutaneous ALCL is also found in the lymph nodes. The symptoms of systemic ALCL include fever, night sweats, and weight loss (B symptoms). The cancer can be found in the bone, soft tissue, spleen, liver and skin. The cause of ALCL is unknown. One type of ALK-negative ALCL has been associated with breast implants.  ALCL is diagnosed by a biopsy of the tumor or abnormal skin and examination of the tumor cells under a microscope. Additional testing including PET scans, CT scans, MRI and a bone marrow biopsy can tell doctors if the cancer has spread to other organs.[15060[15061] 

ALCL is treated using chemotherapy, and a stem-cell transplant for people with more aggressive cancer or for ALCL that has come back. In addition, there are newer treatments that target the cancer cells directly and have been very effective. In general, ALK-positive ALCL has a better long-term outlook than ALK-negative ALCL.[15061][15062]
Last updated: 1/7/2019

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.

  • Brentuximub vedotin (Brand name: Adcetris) - Manufactured by Seattle Genetics, Inc
    FDA-approved indication: November 2018, brentuximab vedotin (Adcetris) was approved for the treatment of adult patients with previously untreated systemic anaplastic large cell lymphoma (sALCL) or other CD30-expressing peripheral T-cell lymphomas (PTCL), including angioimmunoblastic T-cell lymphoma and PTCL not otherwise specified, in combination with cyclophosphamide, doxorubicin, and prednisone. In November 2016, it was approved for treatment of adult patients with primary cutaneous anaplastic large cell lymphoma. In August 2011, it was approved for the treatment of patients with systemic anaplastic large cell lymphoma (sALCL) after failure of at least one prior multi-agent chemotherapy regimen.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information

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

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 Anaplastic large cell lymphoma. 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.

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

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

  • Good Days provides help to patients with life-altering conditions. Assistance includes help with the cost of medications and travel.
  • 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. 

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.

In-Depth Information

  • 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 Anaplastic large cell lymphoma. Click on the link to view a sample search on this topic.

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.

  1. Shustov A, Soma L. Anaplastic large cell lymphoma: Contemporary concepts and optimal management.. Cancer Treat Res. 2019; 176:127-144. https://www.ncbi.nlm.nih.gov/pubmed/30596216.
  2. Tsuyama N, Sakamoto K, Sakata S, Dobashi A, Takeuchi K. Anaplastic large cell lymphoma: pathology, genetics and clinical aspects.. J Clin Exp Hematop. 2017; 57(3):120-142. https://www.ncbi.nlm.nih.gov/pubmed/29279550.
  3. Ferreri AJ, Govi S, Pileri SA, Savage KJ. Anaplastic large cell lymphoma, ALK-negative. Crit Rev Oncol Hematol. 2013; 85(2):206-215. https://www.ncbi.nlm.nih.gov/pubmed/22789917.