Overview
ALK-negative anaplastic large cell lymphoma (ALK-negative ALCL) is a rare 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 'ALK-negative' means that the cancer cells do not have a specific protein change called ALK (anaplastic lymphoma kinase), which helps doctors tell it apart from ALK-positive ALCL, a related but different disease with a generally better outlook. This lymphoma typically shows up as rapidly growing lumps in the lymph nodes, but it can also affect the skin, bones, soft tissues, lungs, and liver. Common symptoms include swollen lymph nodes, fevers, drenching night sweats, unexplained weight loss, and fatigue. Some patients notice skin lumps or rashes. The disease tends to be more aggressive than ALK-positive ALCL and usually occurs in adults, particularly those over 40 years old. Treatment typically involves combination chemotherapy, often using a regimen called CHOP or CHOEP. In recent years, the antibody-drug conjugate brentuximab vedotin (Adcetris) has become an important part of treatment, either combined with chemotherapy upfront or used for relapsed disease. Stem cell transplant may be considered for patients whose disease comes back. While many patients respond well to initial treatment, ALK-negative ALCL has a higher chance of relapse compared to the ALK-positive form, making ongoing monitoring essential.
Also known as:
Key symptoms:
Swollen lymph nodes that grow quicklyUnexplained feversDrenching night sweatsUnexplained weight lossExtreme tiredness and fatigueSkin lumps or rashesBone painSwelling in the abdomenLoss of appetiteItchy skinShortness of breath if lungs are involvedLiver enlargement
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
10 eventsFondazione Italiana Linfomi - ETS
Fudan University — PHASE3
Jonathan Brammer — PHASE2
Baylor College of Medicine — PHASE1
Memorial Sloan Kettering Cancer Center — PHASE1
New York Medical College — PHASE2
Eastern Cooperative Oncology Group — PHASE3
Yale University — PHASE2
CRISPR Therapeutics — PHASE1, PHASE2
Mayo Clinic — PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
2 availableAdcetris
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 P…
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 (NOS), in combination with cyclophosphamide, doxorubicin, and prednisone
Xalkori
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
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-negative anaplastic large cell lymphoma.
Community
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Start the conversation →Latest news about ALK-negative anaplastic large cell lymphoma
Disease timeline:
New recruiting trial: A Study of Alectinib and Duvelisib in People With Anaplastic Lymphoma Kinase-Positive Anaplastic Large Cell Lymphoma (ALK+ALCL)
A new clinical trial is recruiting patients for ALK-negative anaplastic large cell lymphoma
New recruiting trial: Brigatinib in Pediatric and Young Adult Patients With ALK+ ALCL, IMT or Other Solid Tumors
A new clinical trial is recruiting patients for ALK-negative anaplastic large cell lymphoma
New recruiting trial: Golidocitinib Versus Placebo as Maintenance Therapy for Peripheral T-Cell Lymphoma
A new clinical trial is recruiting patients for ALK-negative anaplastic large cell lymphoma
New recruiting trial: A Study of Repotrectinib in Pediatric and Young Adult Subjects Harboring ALK, ROS1, OR NTRK1-3 Alterations
A new clinical trial is recruiting patients for ALK-negative anaplastic large cell lymphoma
New recruiting trial: Constitutive IL7R (C7R) Modified Banked Allogeneic CD30.CAR EBVSTS for CD30-Positive Lymphomas
A new clinical trial is recruiting patients for ALK-negative anaplastic large cell lymphoma
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 my lymphoma, and has it spread beyond the lymph nodes?,Does my tumor have any specific genetic features like DUSP22 or TP63 rearrangements that affect my prognosis?,What treatment plan do you recommend, and will it include brentuximab vedotin?,What are the main side effects I should expect, and how will they be managed?,Am I a candidate for a stem cell transplant, either now or if the disease comes back?,Are there any clinical trials available that might be appropriate for me?,How often will I need scans and follow-up visits after treatment is completed?
Common questions about ALK-negative anaplastic large cell lymphoma
What is ALK-negative anaplastic large cell lymphoma?
ALK-negative anaplastic large cell lymphoma (ALK-negative ALCL) is a rare 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 'ALK-negative' means that the cancer cells do not have a specific protein change called ALK (anaplastic lymphoma kinase), which helps doctors tell it apart from ALK-positive ALCL, a related but different disease with a generally better outlook. This lymphoma typically shows up as rapidly growing lumps in the lymph nodes, but it can also affect the skin, bones, soft tissues, l
How is ALK-negative anaplastic large cell lymphoma inherited?
ALK-negative anaplastic large cell lymphoma follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does ALK-negative anaplastic large cell lymphoma typically begin?
Typical onset of ALK-negative anaplastic large cell lymphoma is adult. Age of onset can vary across affected individuals.
Are there clinical trials for ALK-negative anaplastic large cell lymphoma?
Yes — 15 recruiting clinical trials are currently listed for ALK-negative anaplastic large cell lymphoma on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat ALK-negative anaplastic large cell lymphoma?
25 specialists and care centers treating ALK-negative anaplastic large cell lymphoma are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.