Neuroblastoma Support Groups | DANYELZA® (naxitamab-gqgk)

Neuroblastoma support groups

Providing you with information, logistical assistance, and emotional support throughout your neuroblastoma treatment journey

  • The Andrew McDonough B+ Foundation

    bepositive.org

    The Andrew McDonough B+ Foundation honors the life of Andrew McDonough, whose B+ blood type became his family’s and friends’ motto throughout his fight against childhood cancer: to “Be Positive.” The B+ Foundation raises money to provide financial and emotional support to families of children with cancer nationwide and fund critical, cutting-edge childhood cancer research.

  • Band of Parents

    bandofparents.org

    Band of Parents acts as a support network for the newly diagnosed and their families as they go through treatment.

  • CAC2 Kids’ Cancer Research Foundation

    cac2.org

    Coalition Against Childhood Cancer (CAC2) is a collaborative network of international nonprofits, corporations, and individuals that effectively advance a variety of childhood cancer causes.

  • Children’s Neuroblastoma Cancer Foundation (CNCF)

    cncfhope.org

    The premier source for neuroblastoma information and resources, the CNCF is composed of families like yours committed to finding a cure for neuroblastoma through research, education, awareness, and advocacy.

  • The Children’s Oncology Group

    childrensoncologygroup.org

    The Children’s Oncology Group (COG) is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. COG has nearly 100 active clinical trials open at any given time.

  • Clinicaltrials.gov

    clinicaltrials.gov

    A database of privately and publicly funded clinical studies conducted around the world. Individuals can search key terms, such as “neuroblastoma.”

  • Cookies for Kids’ Cancer

    cookiesforkidscancer.org

    Cookies for Kids’ Cancer started a massive bake-a-thon led by the parents of Liam Witt, who was diagnosed with cancer at age 2. With the help of 250 volunteers, the Witts baked and sold 96,000 cookies and raised more than $420,000 for research. Today, Cookies for Kids’ Cancer has raised more than $18 million for leading pediatric cancer research centers across the United States.

  • The EVAN Foundation

    theevanfoundation.org

    Established in memory of Evan Lindberg, The EVAN Foundation spreads hope and drives change in the fight against neuroblastoma.

  • The James Fund/SickKids Foundation

    sickkidsfoundation.com

    SickKids fights to find new cures and provide world-class care to children with cancer.

  • Memorial Sloan Kettering Kids Neuroblastoma

    mskcc.org/pediatrics/cancer-care/types/neuroblastoma

    The neuroblastoma team at MSK Kids offers you leadership, expertise, reassurance, support, and compassion to give your child the best chance of a cure, a good quality of life, and the best chance for a promising future.

  • Momcology

    momcology.org

    Momcology is a national 501(c)(3) nonprofit organization that provides 2-way peer support for families affected by childhood cancer. Through online and in-person programs, Momcology helps caregivers support one another, share information, and begin a long-term healing process after a childhood cancer diagnosis.

  • NANT

    nant.org

    NANT is a clinical trials consortium focused on developing new treatments and biomarkers for relapsed or refractory high-risk neuroblastoma through early phase clinical trials.

  • Solving Kids’ Cancer (SKC)

    solvingkidscancer.org

    Solving Kids’ Cancer focuses on aggressive childhood cancers with low survival rates, by helping accelerate new, next-generation treatments.

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IMPORTANT SAFETY INFORMATION

What is the most important information I should know about DANYELZA?
DANYELZA may cause serious side effects, including:

Serious infusion-related reactions. DANYELZA can cause serious infusion-related reactions that require immediate medical attention. Infusion-related reactions are common with DANYELZA. Tell your healthcare provider right away if you get any signs or symptoms during or after your DANYELZA infusion, including:

  • swelling of your face, eyes, lips, mouth, or tongue
  • itching
  • redness on your face (flushing)
  • skin rash or hives
  • trouble breathing
  • cough or wheezing
  • noisy high-pitched breathing
  • feeling faint or dizziness (low blood pressure)

WHAT IS DANYELZA?

DANYELZA is a prescription medicine used in combination with a medicine called granulocyte-macrophage colony-stimulating factor (GM-CSF) to treat children 1-year of age and older and adults with high-risk neuroblastoma in the bone or bone marrow that:

  • has come back (relapsed) or that did not respond to previous treatment (refractory), and
  • has shown a partial response, minor response, or stable disease to prior therapy.

It is not known if DANYELZA is safe and effective in children younger than 1 year of age.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about DANYELZA?
DANYELZA may cause serious side effects, including:

Serious infusion-related reactions. DANYELZA can cause serious infusion-related reactions that require immediate medical attention. Infusion-related reactions are common with DANYELZA. Tell your healthcare provider right away if you get any signs or symptoms during or after your DANYELZA infusion, including:

  • swelling of your face, eyes, lips, mouth, or tongue
  • itching
  • redness on your face (flushing)
  • skin rash or hives
  • trouble breathing
  • cough or wheezing
  • noisy high-pitched breathing
  • feeling faint or dizziness (low blood pressure)

WHAT IS DANYELZA?

DANYELZA is a prescription medicine used in combination with a medicine called granulocyte-macrophage colony-stimulating factor (GM-CSF) to treat children 1-year of age and older and adults with high-risk neuroblastoma in the bone or bone marrow that:

  • has come back (relapsed) or that did not respond to previous treatment (refractory), and
  • has shown a partial response, minor response, or stable disease to prior therapy.

It is not known if DANYELZA is safe and effective in children younger than 1 year of age.

Nervous system problems. Talk to your healthcare provider right away if you have new symptoms or worsening of nervous system problems, including:

  • Severe pain from nerves (neuropathic pain), including pain in the belly (abdomen), bone, neck, legs, or arms. Pain is common with DANYELZA and can be severe.
  • Inflammation of the spinal cord. Signs or symptoms may include:
    • weakness in your legs or arms
    • bladder and bowel problems
    • pain in back, legs, or stomach (abdomen)
    • numbness
    • tingling
    • burning sensation
  • Reversible Posterior Leukoencephalopathy Syndrome (RPLS – also known as Posterior Reversible Encephalopathy Syndrome - PRES). PRES is a condition that affects the brain. Your healthcare provider will monitor your blood pressure and check for any neurologic symptoms after your DANYELZA infusion. Signs or symptoms of PRES may include:
    • severe headache
    • vision changes
    • changes in mental status, such as confusion, disorientation, or decreased alertness
    • difficulty speaking
    • weakness in your arms or legs
    • seizures
  • Numbness, tingling, or burning sensation in the arms or legs.
  • Nervous system problems of the eye. Signs or symptoms may include:
    • unequal pupil size
    • blurred vision
    • trouble focusing your eyes
    • larger pupil size (dilated)
    • decreased ability to see
    • sensitivity to light
  • Problems urinating or emptying your bladder (prolonged urinary retention).

Do not receive DANYELZA if you have had a severe allergic reaction to naxitamab-gqgk (the active ingredient in DANYELZA). Ask your healthcare provider if you are not sure.

Before receiving DANYELZA, tell your healthcare provider about all your medical conditions, including if you:

  • have high blood pressure
  • have heart disease
  • are pregnant or plan to become pregnant. DANYELZA may harm your unborn baby.
    • Your healthcare provider will do a pregnancy test before you start treatment with DANYELZA.
    • Females who are able to become pregnant should use effective birth control (contraception) during treatment and for 2 months after your last dose of DANYELZA. Talk to your healthcare provider about birth control choices that may be right for you during this time.
    • Tell your healthcare provider right away if you become pregnant or think you might be pregnant during treatment with DANYELZA.
  • are breastfeeding or plan to breastfeed. It is not known if DANYELZA passes into your breast milk. Do not breastfeed during treatment and for 2 months after your last dose of DANYELZA.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What are the possible side effects of DANYELZA?

DANYELZA may cause serious side effects, including:

  • See “What is the most important information I should know about DANYELZA?”
  • Swelling of the heart (myocarditis). Myocarditis has happened in adolescents ages 12-18 within days of receiving DANYELZA. Tell your healthcare provider if you get any signs or symptoms of myocarditis, including:
    • chest pain
    • shortness of breath
    • irregular heartbeat or feel like your heart is racing
  • High blood pressure (hypertension). High blood pressure is common in people who receive DANYELZA. Your blood pressure will be monitored during your DANYELZA infusion, and at least each day on Days 1 to 8 of each DANYELZA treatment cycle. Tell your healthcare provider right away if you get any signs or symptoms of high blood pressure, including:
    • headaches
    • seizures
    • nausea or vomiting
    • chest pain
    • dizziness
    • visual changes
    • shortness of breath
    • feeling that your heart is pounding or racing (palpitations)
    • nose bleeds
  • Decreased blood pressure (orthostatic hypotension) that can be severe and require hospitalization. You may feel dizzy, lightheaded, or pass out (faint) when you rise too quickly from a sitting or lying position. Your healthcare provider will monitor your blood pressure before you start and during treatment with DANYELZA.

The most common side effects of DANYELZA include:

  • fast heart rate
  • vomiting
  • cough
  • nausea
  • decreased white blood cell, red blood cell, and platelet counts
  • diarrhea
  • decreased appetite
  • tiredness
  • skin rashes
  • decreased level of potassium, sodium, and phosphate in the blood
  • hives
  • fever
  • headache
  • injection site reaction
  • swelling of the body or only in one part of the body
  • anxiety
  • irritability
  • increased liver function blood tests
  • decreased blood sugar level
  • decreased calcium levels in the blood
  • decreased protein levels (albumin) in the blood

These are not all of the possible side effects of DANYELZA. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Please click for full Prescribing Information and Patient Information for DANYELZA including Boxed Warning on serious infusion-related reactions and nervous system problems, and talk to your doctor.