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What can I expect with CAR T?

CAR T-cell therapy (CAR T) has some unique considerations that may be different from other treatments you’re familiar with. Knowing what to expect may help you better prepare for CAR T, find support you may need, and reduce delays and stress.

Video: Preparing for CAR T
Image of video titled Preparing for CAR T: Terry and Cheryl’s Story.
Video: Preparing for CAR T
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What are some important things to know about CAR T? What are the possible side effects? How will side effects be monitored?
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What are some important things to know about CAR T?

CAR T is not a treatment that can be received anywhere at any time. It's important to know that:

CAR T is only available at specialized medical centers

In the US, CAR T isn't offered at every cancer clinic—it's only available at specialized medical centers that are certified to provide CAR T. These centers have treatment teams who are specially trained to support you through each step of CAR T, from initial consultation to side effects management.

If you don't live close to a CAR T medical center, you may need to travel, find lodging, and consider other costs

You can expect to make more than one trip to your CAR T medical center, and may need to stay at the center or nearby. This may mean extra planning and expenses to consider, such as transportation, hotel stays, and care for your home, loved ones, or pets. However, support may be available.

There will be waiting and time required for all steps of the CAR T process

Each step of CAR T can take time to organize and prepare for. For example:

Leading up to CAR T, consultations and appointments will need to be scheduled in advance, sometimes days or even weeks apart. It will also take time for your CAR T cells to be made and shipped to your CAR T medical center. Delays can happen, but your CAR T treatment team will keep you updated.

After your CAR T infusion, you will need to stay at or near the medical center for at least 4 weeks.

For several weeks after your CAR T infusion, you'll be closely monitored for possible side effects and will need a dedicated caregiver

Patients can experience side effects which can become life-threatening. You will need to stay at or near the CAR T medical center for at least 4 weeks after infusion, where you’ll be closely monitored by your CAR T treatment team.

Some symptoms can be hard for patients to recognize, so your caregiver will need to be with you to watch out for side effects.

Your caregiver will continue to be an important part of your care once you return home. For example, they may need to help with transportation as you should not drive for 8 weeks after treatment. Visit the For caregivers page to learn more.

Illustration of three healthcare providers with text stating: You’re not alone! We’re here to help.

All of this might sound like a lot, but remember that:

  • your CAR T treatment team will be there every step of the way
  • people in different circumstances have been able to receive CAR T
  • you can visit the support page to learn about help that may be available if needed
  • the entire treatment process generally only happens once

What are the possible side effects?

In addition to helping your immune system fight cancer, CAR T can cause your immune system to become overactive or affect the rest of your body in unwanted ways.

Cytokine release syndrome and neurotoxicity are two side effects that many patients have experienced and can become life-threatening. Like any medicine, each person's experience and potential side effects will be different.

Your CAR T treatment team is trained to monitor and manage any side effects.

What are the symptoms of cytokine release syndrome and neurotoxicity?

Some examples of the symptoms you may feel are below.

With cytokine release syndrome you may feel:

  • feverish (feeling hot or chills)
  • muscle aches, pain
  • tired
  • a loss of appetite

With neurotoxicity you may experience:

  • changes to your mental state
  • confusion
  • difficulty with movement or language
  • seizures

There are other CAR T side effects. If you and your caregiver notice any symptoms, make sure to tell your CAR T treatment team so they can manage them.

What questions might I ask my CAR T treatment team?

  • What are common side effects and when might they happen?
  • What other side effects could I expect and when might they happen?
  • How can my caregiver and I watch out for side effects?

How will side effects will be monitored?

For at least four weeks after your CAR T infusion, you'll stay at or near the CAR T medical center so that your CAR T treatment team can monitor and manage any side effects.

You and your caregiver will be an important part of watching for side effects. Your CAR T treatment team will teach you about what to watch out for. It's important to share how you are feeling, and for your caregiver to watch out for any side effects that you may not recognize yourself.

When your CAR T treatment team feels you are ready, you will no longer be required to be at or near the CAR T medical center. They will provide instructions for what to do if side effects come up.

Illustration of doctor explaining side effects to patient and caregiver.
How will my CAR T treatment team monitor for side effects?

At the CAR T medical center, your CAR T treatment team may ask you to do some tasks to see if there have been any changes in your mental and physical abilities. For example, they may ask you to:

  • write something, like a standard sentence
  • say something, like naming the date and location you are in, pointing to and naming objects in the room, counting backwards from 100 by increments of 10
  • follow a simple instruction, like holding up two fingers
Illustration of patient doing tasks as a part of close monitoring after CAR T.

Your CAR T treatment team will also watch for any changes in how your body and organs are working. For example, they will check:

  • your temperature to see if you have a fever or an elevated temperature (over 100.4°F or 38ºC)
  • your blood pressure to see if you have low blood pressure (hypotension)
  • your oxygen levels to see if you have low oxygen levels (hypoxia)
  • your blood test results to see if there is any change in how your internal organs are working

Your CAR T treatment team may also run other tests that aren't on this list.

Illustration of patient being monitored by nurse as a part of close monitoring after CAR T.
Where can I learn more about side effects and how they're managed?

Let's chat about CAR T—One-on-One

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Connect with real patients and caregivers who can share their experience with CAR T.

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Learn more and sign up