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Pediatric CAR T-Cell Therapy Frequently Asked Questions

  • At Dana-Farber/Boston Children's Cancer and Blood Disorders Center, we use CAR T-cell therapy to treat some of the most complex childhood acute lymphoblastic leukemia (ALL) and childhood non-Hodgkin lymphoma cases.

    We know that you may have many questions about CAR T-cell therapy and whether it is a treatment option that may work for your child. Our specialized team of CAR T-cell therapy doctors and caregivers are here to inform you and guide you through the process.

    Here are some frequently asked questions about CAR T-cell therapy for childhood leukemia and lymphoma, including information about KYMRIAH®:

    What is KYMRIAH CAR T-cell therapy?

    KYMRIAH CAR T-cell therapy (also known as tisagenlecleucel) is a prescription cancer treatment for patients with acute lymphoblastic leukemia (ALL) and non-Hodgkin lymphoma. It involves treating patients with cells made from their own immune system's white blood cells. These T cells help protect the body from disease.

    The pharmaceutical company Novartis developed KYMRIAH. The FDA approved it in August 2017.

    Who can get KYMRIAH CAR T-cell therapy?

    Right now, we use KYMRIAH CAR T-cell therapy to treat some pediatric patients with relapsed or refractory ALL and B-cell non-Hodgkin lymphoma. You and your care team will decide if KYMRIAH CAR T-cell therapy is right for your child.

    Does my child need to have relapsed or refractory ALL or non-Hodgkin lymphoma to get KYMRIAH CAR T-cell therapy?

    Yes. There are other treatments that we use if your child has not relapsed. We try those treatments first before using CAR T-cell treatment.

    Does KYMRIAH CAR T-cell therapy treat other kinds of cancer?

    No. KYMRIAH CAR T-cell therapy does not treat other kinds of pediatric cancer at this time.

    Is KYMRIAH CAR T-cell therapy a cure for ALL or non-Hodgkin lymphoma?

    This therapy aims to cure ALL and non-Hodgkin lymphoma; however, your care team will discuss your child's specific case in more detail with you.

    How do I know if my health insurance covers KYMRIAH CAR T-cell therapy?

    Because this therapy is relatively new, it's unclear how much insurance providers may cover for this therapy. We encourage you to talk with your insurance company. Our staff can help guide you through the insurance approval process.

    How does KYMRIAH CAR T-cell therapy work?

    KYMRIAH CAR T-cell therapy uses cells made from the patient's immune system (the body's natural defense against illness). It takes many steps to make this treatment and to make sure it's safe for your child. It takes about three weeks to collect the cells for treatment.

    What are the risks/side effects of KYMRIAH CAR T-cell therapy?

    There are a few possible risks/side effects, including:

    • Cytokine-release syndrome (CRS) is one of the most common side effects. T cells make cytokines as part of their work to fight diseases. These are chemicals that help fuel the body's immune response. CRS happens when the body produces many cytokines too fast and puts them into the bloodstream, leading to high fevers and sudden drops in blood pressure.
    • B-cell aplasia is a possible side effect. B cells make antibodies that destroy disease cells. B-cell aplasia happens when CAR T-cell treatment destroys a large number of B cells. Many patients get immunoglobulin therapy (extra antibodies) to help prevent disease when they don't have enough B cells.
    • Cerebral edema (swelling in the brain) is a rare side effect that can sometimes be life-threatening. If it occurs, it usually is in patients with more advanced leukemia.

    How will my child feel after KYMRIAH CAR T-cell therapy?

    The treatment may cause short-term problems with memory and coordination. It can also cause sleepiness, confusion, weakness, dizziness, and seizures.

    What does it mean to be a certified treatment center? Can any hospital give KYMRIAH CAR T-cell therapy?

    No, only hospitals that meet quality and technical standards set by Novartis can offer this treatment. Novartis approved Dana-Farber/Boston Children's as a certified treatment center for KYMRIAH CAR T-cell therapy.

    Can I get KYMRIAH CAR T-cell therapy as an outpatient treatment?

    We feel that KYMRIAH CAR T-cell therapy should be an inpatient treatment. Due to the possible risks, we think it is safer to treat patients here in the hospital and to watch them closely for how they are reacting.

    Who will be part of my child's KYMRIAH CAR T-cell therapy treatment team?

    You will have a specialized care team to guide you through the process. Members of the team may include:

    • Bone marrow transplant specialists
    • Boston Children's Blood Lab (Apheresis team)
    • Cell manufacturing core facility (CMCF) group
    • Gene therapy specialists
    • Leukemia specialists
    • Nurse coordinators
    • Psychosocial support team
    • Staff nurses and clinical assistants

    Learn more about our expert CAR T-cell therapy team.

    How long will we need to be in the Boston area?

    You will need to stay within two hours of Dana-Farber/Boston Children's for at least four weeks from the time of the CAR T-cell infusion. However, if your primary hospital sent your child, we will transfer your child's care to your home hospital.

    What resources are available to support my family?

    Both Dana-Farber Cancer Institute and Boston Children's Hospital offer resources to support patients and families throughout the CAR T-cell therapy process. These resources include:

    Dana-Farber Cancer Institute's Pediatric Resource Program

    To speak with a resource specialist, please ask any member of your care team for a referral or directly call one of our resource specialists.

    Learn more about the Pediatric Resource Program.

    Boston Children's Hospital's Hale Family Center for Families

    For more information, call 617-355-6279 or email center.families@childrens.harvard.edu.

    Learn more about the Hale Family Center for Families.