CAR T-Cell Therapy, Step by Step: What to Expect

CAR T-cell therapy is a treatment made from your own immune cells. It can feel like a lot to take in, so here's what happens at each step, in plain words.

What is CAR T?

CAR T-cell therapy changes the genes in a person's T cells to help them attack cancer.2 The T cells are engineered to make special proteins on their surface called chimeric antigen receptors, or CARs.1 Because it uses your own T cells, one expert quoted by the National Cancer Institute calls it a "living drug." After the infusion, the cells are meant to keep expanding in your body and kill cancer cells.1

The FDA has approved CAR T-cell therapies for some kinds of lymphomas and leukemias, as well as multiple myeloma. It's usually used after other treatments have been tried.2

Step 1: Collecting your T cells

This step is called apheresis. Your blood flows out and through a machine that keeps the white blood cells and returns the rest of your blood to your body.3 It usually takes about 3 to 6 hours.3

  • You may feel dizzy or cold, or notice numbness or tingling.3
  • Numbness or tingling in your fingertips or around your mouth is a sign of low calcium, so tell your nurse.4
  • If more cells are needed, collection can be repeated.3

Steps 2 and 3: Building and growing your cells

In a lab, your T cells are changed to carry CARs.2 Then they're grown until there are hundreds of millions of them.1 From blood collection to infusion, this takes about 3 to 5 weeks.1

Step 4: Conditioning chemo

A few days before your infusion, you'll likely get a short, fairly mild course of chemo. It lowers the number of other immune cells in your body.2 For YESCARTA, one CAR T product, this is 3 days of chemo given on the fifth, fourth and third days before infusion.5

Step 5: Infusion day

Your CAR T cells go back into your body through an IV.2 For YESCARTA, you get acetaminophen and an antihistamine about an hour before, and the whole bag is given within 30 minutes.5

Step 6: Monitoring and recovery

  • With YESCARTA, your team checks you at least daily for the first 7 days after infusion.5
  • Plan to stay near a healthcare facility for at least 2 weeks after infusion.5,6
  • Avoid driving for at least 2 weeks.5 Your team may give you different instructions, so follow theirs.
  • New cancers, including T-cell cancers, have happened after treatment, so you'll be watched for them for life.5

Side effects to know

Cytokine release syndrome (CRS). The new T cells can release large amounts of cytokines, which can cause dangerously high fevers and sudden drops in blood pressure.1 Signs include high fever and chills, trouble breathing, dizziness, a fast heartbeat and tiredness.2

Neurologic effects (ICANS). Signs can include confusion, headaches, seizures, tremors, and trouble speaking or understanding.2

Infections and low blood counts. CAR T can weaken your immune system, raising the risk of serious infections, and it can lower your blood cell counts.2

Know your fever number. Memorial Sloan Kettering, for example, tells patients to call their healthcare provider for a fever of 100.4°F (38°C) or higher after their T cell collection.4 Ask your own team exactly when to call, day or night.

Want a plan you can hold in your hands? Your CAR T Journey is a printable 15-page PDF with a six-step timeline, a “when to call” page to keep handy, and space for your care team’s numbers and your questions. Instant download, $3.99.

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Sources

  1. CAR T Cells: Engineering Patients' Immune Cells to Treat Their Cancers, National Cancer Institute
  2. CAR T-cell Therapy and Its Side Effects, American Cancer Society
  3. Collecting Cells for CAR T-cell Therapy, St. Jude Children's Research Hospital, Together
  4. About Your T Cell Collection, Memorial Sloan Kettering Cancer Center
  5. YESCARTA (axicabtagene ciloleucel) Prescribing Information, U.S. Food and Drug Administration
  6. FDA Eliminates Risk Evaluation and Mitigation Strategies (REMS) for Autologous CAR T Cell Immunotherapies, U.S. Food and Drug Administration

For education only, not medical advice. Every treatment center and CAR T product is a little different, so always follow your care team's instructions.