Overview
ALK-positive anaplastic large cell lymphoma (ALK+ ALCL) is a type of non-Hodgkin lymphoma, which is a cancer of the immune system. Specifically, it affects a type of white blood cell called T-cells. The name comes from a protein called ALK (anaplastic lymphoma kinase) that is abnormally active in the cancer cells due to a genetic change that happens during a person's lifetime — it is not inherited from parents. This disease most commonly affects children, teenagers, and young adults, though it can occur at any age. ALK+ ALCL typically causes swollen lymph nodes, often in the neck, armpits, or groin. Many patients also experience "B symptoms" such as unexplained fevers, drenching night sweats, and weight loss. The cancer can spread beyond the lymph nodes to the skin, bones, lungs, liver, and soft tissues. Some patients develop skin lumps or rashes as an early sign. The good news is that ALK+ ALCL generally responds well to treatment and has a better outlook compared to many other types of lymphoma. Standard treatment involves combination chemotherapy, and most patients — especially children and young adults — achieve long-term remission. For patients whose disease comes back or does not respond to initial chemotherapy, targeted therapies such as brentuximab vedotin (which targets the CD30 protein found on these cancer cells) and ALK inhibitors like crizotinib are available. The overall cure rate is relatively high, making this one of the more treatable forms of T-cell lymphoma.
Also known as:
Key symptoms:
Swollen lymph nodes that may be painlessUnexplained feversDrenching night sweatsUnexplained weight lossExtreme tiredness and fatigueSkin lumps or rashesBone painCough or difficulty breathing if lungs are involvedAbdominal pain or swellingLoss of appetiteItchy skinSoft tissue swelling or massesLiver enlargementGeneral feeling of being unwell
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
Treatments
1 availableXalkori
XALKORI is indicated for the treatment of pediatric patients 1 year of age and older and young adults with relapsed or refractory, systemic anaplastic large cell lymphoma (ALCL) that is ALK-positive
Clinical Trials
View all trials with filters →No actively recruiting trials found for ALK-positive anaplastic large cell lymphoma at this time.
New trials open frequently. Follow this disease to get notified.
Rare Disease Specialist
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Financial Resources
1 resourcesTravel Grants
No travel grants are currently matched to ALK-positive anaplastic large cell lymphoma.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What stage is the lymphoma, and has it spread beyond the lymph nodes?,What chemotherapy regimen do you recommend, and what are the expected side effects?,What is the expected chance of cure with the recommended treatment plan?,What are the signs of relapse I should watch for after treatment ends?,Are there clinical trials available that might be appropriate for my situation?,What long-term side effects should I be aware of, and how will they be monitored?,Should I consider fertility preservation before starting treatment?
Common questions about ALK-positive anaplastic large cell lymphoma
What is ALK-positive anaplastic large cell lymphoma?
ALK-positive anaplastic large cell lymphoma (ALK+ ALCL) is a type of non-Hodgkin lymphoma, which is a cancer of the immune system. Specifically, it affects a type of white blood cell called T-cells. The name comes from a protein called ALK (anaplastic lymphoma kinase) that is abnormally active in the cancer cells due to a genetic change that happens during a person's lifetime — it is not inherited from parents. This disease most commonly affects children, teenagers, and young adults, though it can occur at any age. ALK+ ALCL typically causes swollen lymph nodes, often in the neck, armpits, or
How is ALK-positive anaplastic large cell lymphoma inherited?
ALK-positive anaplastic large cell lymphoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat ALK-positive anaplastic large cell lymphoma?
25 specialists and care centers treating ALK-positive anaplastic large cell lymphoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for ALK-positive anaplastic large cell lymphoma?
1 patient support program are currently tracked on UniteRare for ALK-positive anaplastic large cell lymphoma. See the treatments and support programs sections for copay assistance, eligibility, and contact details.