CAR T-cell therapy: A step-by-step guide for patients and families

Table of contents:  

• What is CAR-T?  
• Step 1: Collecting your T cells 
• Step 2: Your T cells go to the lab 
• Step 3: Preparing your body for CAR-T 
• Step 4: Receiving the CAR-T infusion 
• Step 5: The days and weeks after infusion 
• The role of caregivers during CAR-T 
• What happens after recovery? 
• Questions to ask your healthcare team 
• Blood Cancer United resources for CAR-T

Learning that CAR T-cell therapy may be an option for you can lead to plenty of questions.  

What exactly is CAR-T? How does it work? What happens during treatment? What should you expect afterward?  

While every person’s experience is unique, understanding the process can help you feel more prepared and confident as you go through treatment. This guide walks through each stage of CAR T-cell therapy, from collecting your cells to recovery and beyond. 

What is CAR T-cell therapy?

Chimeric antigen receptor (CAR) T-cell therapy is a type of immunotherapy that uses your own immune system to help find and destroy cancer cells. Unlike chemotherapy, which attacks rapidly growing cells throughout the body, CAR-T works by modifying your own T cells, a type of immune cell, so they can better recognize and target certain blood cancer cells.  

CAR-T is approved for some types of blood cancer and may be an option for certain patients whose disease has returned after treatment or has not responded as expected to other therapies. Whether CAR-T is right for you depends on many factors, including your diagnosis, treatment history, overall health, and recommendations from your healthcare team.  

One of the most important things to know is that CAR-T is not a one-day treatment. It is a multi-step process that takes place over several weeks and requires careful planning, monitoring, and support.  

Step 1: Collecting your T cells

The first step in CAR T-cell therapy is collecting your T cells. These will later be transformed into CAR-T cells.  

This process is called apheresis.  

Is it surgery?  

No. Apheresis is not surgery and does not require an operating room. Many patients compare it to donating blood or platelets, although it takes longer.

During the procedure, blood is removed through an IV catheter or central line. A machine separates the T cells, and the remaining blood is returned to your body.  

How long does it take?  

The collection process typically takes several hours. Most people spend part of the day at the treatment center and return home afterward.  

What should I expect?  

While everyone’s experience is different, you may experience:  

• Fatigue during or after the procedure
• Feeling cold while hooked up to the machine
• Mild tingling sensations caused by temporary changes in calcium levels
• A long day of sitting and waiting

It could be helpful to bring a book, tablet, music, snacks, or a friend with you to pass the time.

Once your T cells have been collected, they are sent to a specialized laboratory. 

Step 2: Your T cells go to the lab  

This part of CAR-T can feel the most mysterious.  

In the laboratory, scientists make a small change to your T cells so they can recognize specific proteins found on cancer cells. The modified cells are allowed to grow and multiply in the lab until there are millions of them. Once enough cells have been created, they are frozen and shipped back to your treatment center.  

The manufacturing process generally takes several weeks.  

What happens to me during this time?  

Some patients may simply be monitored while waiting for their CAR-T cells to be ready. Others may receive additional treatment, sometimes called “bridging therapy,” to help keep their disease under control.  

Your healthcare team will create a plan based on your individual situation.  

This waiting period can be one of the hardest parts of CAR T-cell therapy. Many patients describe feeling hopeful one moment and uncertain the next while they wait for their cells to return. 

Step 3: Preparing your body for CAR-T

Before receiving your CAR-T cells, you’ll likely receive a short course of chemotherapy known as lymphodepleting chemotherapy.  

While this is a form of chemotherapy, the goal is not necessarily to treat the cancer directly.  

Instead, this treatment helps make room in your immune system for the incoming CAR-T cells so they can expand and work effectively once infused.  

This preparation phase usually takes place over several days.  

Your healthcare team will explain:  

• Which medications you’ll receive
• Possible side effects
• What symptoms to report
• When you should arrive for your infusion appointment 

Step 4: Receiving the CAR-T infusion  

Infusion day is the moment patients have been waiting for.

The good news: the actual infusion is usually much shorter and simpler than you may expect.  

What is infusion day like?  

Your CAR-T cells are thawed and infused into your bloodstream through an IV or existing central line. The infusion itself often takes less than 30 minutes.  

During and after the infusion:  

• Your care team will monitor you closely
• Your vital signs will be checked regularly
• You’ll be observed for signs of side effects
• Caregivers may receive instructions about symptoms to watch for at home

Many patients are surprised that the infusion itself is often the shortest part of the process after weeks of preparation and waiting.

Why does monitoring begin immediately?

Once the CAR-T cells enter your body, they begin multiplying and searching for cancer cells.  

As they become active, side effects can occur. This is why healthcare teams closely monitor patients immediately after treatment and throughout the recovery period. 

Step 5: The days and weeks after infusion

Recovery looks different for everyone.  

Some patients experience only mild side effects, while others require additional monitoring or hospitalization.  

What side effects are doctors watching for?  

Two of the most closely monitored side effects are:  

Cytokine release syndrome (CRS)  

This happens when activated immune cells release large amounts of inflammatory chemicals called cytokines. Symptoms may include:  

• Fever
• Chills
• Fatigue  
• Low blood pressure
• Rapid heart rate
• Difficulty breathing

Immune effector cell-associated neurotoxicity syndrome (ICANS)

This can affect the nervous system and may cause symptoms such as confusion, difficulty finding words, changes in handwriting, memory problems, and other neurological symptoms.

See more possible side effects here.

Reading about potential side effects can feel overwhelming. But treatment centers that provide CAR-T therapy know what to look for and respond quickly if they occur.

Why do I need to stay nearby?

Many treatment centers require patients to stay close to the hospital for several weeks after infusion.

This allows your healthcare team to respond quickly if side effects develop. 

The important role caregivers play

Because CAR-T requires close monitoring before, during, and after treatment, caregivers are often a critical part of the process. Their support can help patients safely manage appointments, recovery, and potential side effects.

A caregiver may help by:

• Driving to appointments
• Tracking medications
• Monitoring symptoms
• Taking notes during medical visits
• Providing emotional support
• Communicating changes to the healthcare team

In fact, many treatment centers require patients to identify a caregiver before treatment begins.

If you're a caregiver, it's important to take care of yourself, too. Accept help when it's available and make time for your own physical and emotional well-being. 

What happens after recovery?  

You'll continue having follow-up appointments, blood tests, and scans so your healthcare team can evaluate how you're responding to treatment.

Some people achieve long-term remission after CAR T-cell therapy. Researchers continue to study ways to improve outcomes and expand the use of CAR-T for more types of blood cancer.

Even after treatment ends, your healthcare team will monitor your recovery and help guide your next steps. 

Questions to ask your healthcare team

If you're considering CAR-T, these questions can help guide conversations with your care team:

• Why do you believe CAR T-cell therapy is a good option for me?
• What benefits do you hope this treatment will provide?
• What are the risks and possible side effects?
• How long will the process take?
• Will I need a caregiver?
• How long will I need to stay near the treatment center?
• What should I expect during recovery?
• What symptoms require an immediate call to the medical team?
• Are there CAR-T clinical trials I should consider?
• What financial resources and support services are available?

Writing your questions down before appointments can help ensure you get the information you need to make informed decisions. 

Blood Cancer United is here to help

You don't have to navigate CAR-T therapy alone. Whether you're weighing your options, preparing for CAR-T, or adjusting to life afterward, Blood Cancer United is here to help.

We offer free resources and support for patients and families throughout treatment and recovery, including:

• Information Specialists who can answer questions about blood cancer, treatment options, side effects, clinical trials, and our many support services and resources
• Free educational materials, including the chimeric antigen receptor (CAR) T-cell therapy fact sheet
• Peer support and community connections
• Caregiver resources
• Financial assistance programs for eligible patients
• Question guides to help you prepare for conversations with your healthcare team

Whether you're exploring CAR-T for the first time or preparing for treatment, support is available every step of the way.