Skip to Main Content

Welcome to

Together is a new resource for anyone affected by pediatric cancer - patients and their parents, family members, and friends.

Learn More
Blog

Tisagenlecleucel

Immunotherapy CAR T-Cell

Brand names:

Kymriah®

Often used for:

Acute lymphoblastic leukemia, Certain types of lymphoma

clipboard icon

What is tisagenlecleucel?

Tisagenlecleucel (KYMRIAH) is a type of medicine called CAR T-Cell immunotherapy. This therapy works by engineering T cells to have special a receptor called a chimeric antigen receptor (CAR). This receptor helps T cells to recognize and attack cancer cells.

A serious condition called cytokine release syndrome (CRS) can occur after receiving this therapy. This usually occurs within the first 1-2 weeks of therapy. Patients will be monitored for CRS during the infusion and for at least 4 weeks after treatment. A medicine called tocilizumab may be given if CRS develops after receiving CART cell therapy.

Patients will have regular blood draws to check blood counts and immunoglobulin levels.

iv bag icon

Given as a liquid into a vein by IV

 
exclamation mark in a circle icon

Possible side effects

Cytokine release syndrome - symptoms can include:

  • Fever
  • Chills
  • Low blood pressure
  • Kidney problems
  • Liver problems
  • Shortness of breath
  • Low oxygen levels in the blood
  • Joint pain
  • Muscle pain

Neurologic effects - symptoms can include:

  • Headache
  • Seizures
  • Confusion
  • Tremors
  • Hallucinations
  • Altered mental status
  • Slurred speech
  • Dizziness
  • Low blood counts (may cause increased risk of infection, bleeding, anemia and/or fatigue)
  • Loss of appetite and weight loss
  • Nausea or vomiting
  • Constipation
  • Diarrhea
  • Fatigue or weakness
  • Skin rash
  • Abdominal pain
  • Back pain
  • Low potassium levels in the blood
  • Swelling of face or legs

Not all patients who take tisagenlecleucel will experience these side effects. Common side effects are in bold, but there may be others. Please report all suspected side effects to your doctor or pharmacist.

late effects icon

Possible long-term or late effects

Some patients may experience long-term or late effects of treatment that may continue or develop months or years after treatment ends. Possible late effects due to tisagenlecleucel include:

  • Chronic infections
  • Second cancers
family icon

Tips for families

Be sure to discuss these and other recommendations with your doctor or pharmacist.

  • You will be given a Patient Wallet Card with information on the side effects of CAR T-cell therapy. Keep this card with you at all times.
  • You must stay within 2 hours of the hospital for at least 4 weeks after receiving the infusion unless otherwise indicated by your doctor.
  • Tisagenlecleucel may cause drowsiness, dizziness, confusion, and seizures. Patients should not drive or do anything that could be dangerous for at least 8 weeks after receiving the infusion.
  • In the case of severe cytokine release syndrome, patients may be treated with tocilizumab and/or corticosteroids.
  • Patients may be given diphenhydramine (Benadryl®), acetaminophen (Tylenol®), or other medicines to help prevent reactions during a tisagenlecleucel infusion.
  • Patients should not get certain types of vaccines (known as ‘live’ vaccines) for a period of time before or after receiving this medicine.
  • Sexually active patients should take steps to prevent pregnancy during treatment.
  • Patients should tell their doctor if they are pregnant or breastfeeding.