What is my role as a caregiver?

Caregivers play a major role in supporting the patient, and this is especially true for CAR T treatment. CAR T patients need a full-time caregiver to:

  • stay near the certified treatment center? and help support them for at least 4 weeks
  • watch out for symptoms of side effects throughout recovery—some side effects may be hard for the patient to notice themselves (see the Managing side effects page and Important Facts about TECARTUS to learn more)
  • help them with daily activities
  • help them with recovery (e.g., eating well and keeping surroundings clean)
  • help with transportation—the patient should not drive for at least 8 weeks after infusion

For more information about the caregiver role throughout the CAR T treatment process, visit the treatment process guide or talk to your treatment team about any questions you may have.


Where can caregivers find support?

Being a caregiver can be physically and emotionally demanding. It’s common to overlook your own needs, but this can lead to burnout. Remember to take care of yourself, too.

The lists below are a starting point for learning about different organizations that support caregivers. You can ask your treatment team about other support that might be available.

Resources may include referrals to independent third-party nonprofit patient assistance programs. These programs are not operated or controlled by Kite, and Kite does not endorse any program or third-party organization. Nonprofit patient assistance program eligibility requirements may vary and are established solely by each independent organization. Kite makes no guarantee with respect to reimbursement or copay assistance for any item or service.

A caregiver practicing self-care.

“It was important for me to have an outlet to talk to other people and keep my mind busy. I also tried to walk as much as I could to help with stress.”

PattiTECARTUS Caregiver

This testimonial is representative of the caregiver’s own experience. Individual treatment results and experience may vary.

Patti TECARTUS® (brexucabtagene autoleucel) caregiver ambassador in a car.

This testimonial is representative of the caregiver’s own experience. Individual treatment results and experience may vary.


Share your story

Treatment stories may help educate and inspire others. If you have cared for someone who completed treatment and want to share your story with us, learn more at mykitecartstory.com.


Have questions? Call us

Your treatment team is the best resource for support throughout treatment.

If you have questions at any step of the CAR T process, our dedicated team at Kite can also help. You can call them at:

Certified treatment centers

In order to provide TECARTUS, cancer treatment centers must first be certified. Certified treatment centers have specifically-trained medical staff, strict treatment protocols, and safety measures in place for CAR T-cell therapy. These centers are often first to use best care practices learned through research.

Certified treatment centers are sometimes known as authorized treatment centers.


If you have questions at any step of the CAR T process, our dedicated team at Kite can help.


Learning resources

Explore these links to find helpful information about cancer, CAR T, caregiving, and how to take care of yourself as a caregiver.

American Cancer Society

what to expect and tips

Be the Match

support and resources for caregivers

Cancer Support Community

tips, guides, and other resources

CancerCare

information and resources from CancerCare
a compilation of additional resources

Caregiver Action Network

education, peer support, and resources

Help for Cancer Caregivers

build a resource guide tailored to your needs

Leukemia & Lymphoma Society

information and resources

National Cancer Institute

a selection of topics applicable to caregivers

Patient Empowerment Network

videos, articles, blogs and podcasts

Approved Uses

TECARTUS is a treatment for adults with mantle cell lymphoma or acute lymphoblastic leukemia ...

Important Safety Information

What is the most important information I should know about TECARTUS? TECARTUS may cause side effects that are life-threatening and can lead to death ...

Approved Uses and Important Safety Information

Approved Uses

TECARTUS is a treatment for adults with mantle cell lymphoma or acute lymphoblastic leukemia. It is used following disease progression while on or after other treatment. TECARTUS is different than other cancer medicines because it is made from your own white blood cells, which have been modified to recognize and attack your lymphoma cells.

Important Safety Information

What is the most important information I should know about TECARTUS?

TECARTUS may cause side effects that are life-threatening and can lead to death. Call or see your healthcare provider or get emergency help right away if you get any of the following:

  • Fever (100.4°F/38°C or higher)
  • Difficulty breathing
  • Chills or shaking chills
  • Confusion
  • Dizziness or lightheadedness
  • Severe nausea, vomiting, or diarrhea
  • Fast or irregular heartbeat
  • Severe fatigue or weakness

It is important to tell your healthcare provider that you received TECARTUS and to show them your TECARTUS Patient Wallet Card. Your healthcare provider may give you other medicines to treat your side effects.

Before getting TECARTUS, tell your healthcare provider about all your medical problems, including if you have or have had:

  • Neurologic problems (such as seizures, stroke, or memory loss)
  • Lung or breathing problems
  • Heart problems
  • Liver problems
  • Kidney problems
  • A recent or active infection

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

How will I receive TECARTUS?

  • Since TECARTUS is made from your own white blood cells, your blood will be collected by a process called “leukapheresis” (loo-kah-fur-ee-sis), which will concentrate your white blood cells.
  • Your blood cells will be sent to a manufacturing center to make your TECARTUS.
  • Before you get TECARTUS, you will get 3 days of chemotherapy to prepare your body.
  • When your TECARTUS is ready, your healthcare provider will give it to you through a catheter placed into your vein (intravenous infusion). The infusion usually takes less than 30 minutes.
  • You will be monitored where you received your treatment daily for at least 7 days for patients with MCL and at least 14 days for patients with ALL after the infusion.
  • You should plan to stay close to the location where you received your treatment for at least 4 weeks after getting TECARTUS. Your healthcare provider will help you with any side effects that may occur.
  • You may be hospitalized for side effects. Your healthcare provider will discharge you if your side effects are under control and it is safe for you to leave the hospital.
  • Your healthcare provider will want to do blood tests to follow your progress. It is important that you do have your blood tested. If you miss an appointment, call your healthcare provider as soon as possible to reschedule.

What should I avoid after receiving TECARTUS?

  • Do not drive, operate heavy machinery, or do other dangerous things for 8 weeks after you get TECARTUS because the treatment can cause sleepiness, confusion, weakness, and temporary memory and coordination problems.
  • Do not donate blood, organs, tissues, or cells for transplantation.

What are the possible or reasonably likely side effects of TECARTUS?

The most common side effects of TECARTUS include:

  • Fever (100.4°F/38°C or higher)
  • Low white blood cells (can occur with a fever)
  • Low red blood cells
  • Low blood pressure (dizziness or lightheadedness, headache, feeling tired, short of breath)
  • Fast heartbeat
  • Confusion
  • Difficulty speaking or slurred speech
  • Nausea
  • Diarrhea

These are not all the possible side effects of TECARTUS. Call your healthcare provider about any side effects that concern you. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please see the Important Facts about TECARTUS, including IMPORTANT WARNINGS.

Support groups and online communities

Many organizations provide caregiver-specific support groups, forums, and communities. You can talk to other caregivers about what's on your mind or hear about their experiences.

CancerCare

led by professional oncology social workers

Cancer Support Community

online community of patients, survivors, and caregivers

Caregiver Action Network

peer support forums

Family Caregiver Alliance

a selection of in-person and online support groups

Leukemia & Lymphoma Society

online gathering place for patients, caregivers and healthcare professionals
selection of forums moderated by an oncology social worker

Lymphoma Research Foundation

a one-to-one peer support program