CAR T Cell Therapy
CAR T cell therapy, or chimeric antigen receptor T cell therapy, is one way to use the body’s natural defenses to fight cancer. It is called CAR T cell therapy because a lab-made protein, called chimeric antigen receptor (CAR), is added to the patient’s own T cells, which are a type of white blood cell. The CAR protein helps T cells target cancer cells to be killed and helps train your immune system to attack the cancer. Your immune system is your body’s natural defense against disease. T cells are your immune system’s “fighters.” Their job is to seek out and attack viruses, bacteria, and abnormal cells like cancer.
CAR T Cell Therapy Navigation
If you or a loved one is considering or actively being treated with CAR T cell therapy, please call 844-792-6517 and get support and resource information. Share our postcard with others so they too can get support and information today.
CAR T cell therapy, or CAR T, is a type of cancer treatment called immunotherapy. Immunotherapy helps your immune system see and kill cancer cells. The U.S. Food and Drug Administration (FDA) approved the first CAR T therapy in 2017. CAR T is an approved treatment option for patients who have multiple myeloma and certain types of leukemia and lymphoma.
This program focuses on common challenges and worries, acknowledging the known and unknown, and tips for managing the stress of uncertainty.
This program offers information on CAR T-associated side effects and tips for coping as you support your loved one with the planning and therapy process.
Who Can Get CAR T?
The FDA has approved 5 CAR T cell therapy treatments. These treatments are typically for patients where the cancer is refractory (the cancer has not responded to previous treatment) or relapsed (the cancer has returned) after having 1 or more prior treatments. More treatments and uses of approved treatments are in clinical trials.
Our guide for CAR T patients and caregivers provides support through each stage of the CAR T process, from referral to post-treatment care.
How Does CAR T Work?
CAR T cell therapy removes some of a patient’s T cells and alters them to make them better able to fight cancer. The altered T cells are then returned to the patient’s body to go to work. CAR T cells harness the power of a patient’s immune system against the cancer. With the new CAR protein, these T cells have been described as bionic.
Here’s how the CAR T cell therapy process works:
- Blood is removed from the patient to get the T cells – T cells are collected from your bloodstream in a procedure called apheresis. The T cells may be frozen and kept in a special temperature-controlled storage unit until you are ready to receive treatment.
- CAR T cells are made in the lab – CAR proteins, which act like cancer-cell tracking devices, are then added to your T cells. Now your T cells are CAR T cells.
- Millions of CAR T cells are grown – The new CAR T cells continue to grow in the lab until there is enough for your treatment.
- CAR T cells are infused into the patient – Once the CAR T cells are ready, they are infused back into your bloodstream. You may get a brief course of chemotherapy (referred to as conditioning chemotherapy) before getting the CAR T infusion. This is done to destroy regular T cells and give the CAR T cells more room to operate.
- CAR T cells bind to cancer cells and kill them – Once the CAR T cells are in your bloodstream, they attack the cancer cells.
CAR T is designed to be a one-time treatment. CAR T cells can remain in the body and continue to be active for a long period of time. After you get the new CAR T cells, you will need a caregiver to be with you 24 hours a day, 7 days a week, for 4-8 weeks, to support and watch for side effects.
Where Is CAR T Given?
At first, CAR T treatments were only available at a few cancer centers. Now more than 150 cancer centers in the United States offer CAR T cell therapy. Your oncologist may work at a cancer center that has a CAR T program. If not, they may refer you to a program at another cancer center. This center may be near you or in another city or state. To get CAR T, you may need to be away from home for several months at a time.
CAR T Patient Journey
1. Referral to CAR T
Your primary oncologist refers you to a CAR T program to discuss an FDA-approved CAR T therapy or a clinical trial. If you seek a second opinion at a cancer center, you may learn of CAR T that way.
2. First Appointment
Your first appointment allows you to learn more about the cancer center’s CAR T program. This appointment will also help the cancer center decide if CAR T is right for you. The treatment team will do some screening tests to make sure you are eligible and healthy enough to go through the treatment.
3. Screening Tests
During your first appointment with the CAR T team, you will have screening tests to see if this is a good treatment option for you. Additional screening tests may be broken into multiple appointments during your first visit. Timing of your first appointment and screening tests may vary based on the center’s availability and the health care provider’s schedule.
4. Treatments to Qualify for CAR T
You may need treatment to become healthy enough to participate in CAR T therapy. These kinds of therapies may cause month-long waits before you start the CAR T therapy process. Even if you are healthy enough at this point in the process to start CAR T, you may need bridging treatment to stay healthy long enough to get to the “infusion” step of CAR T therapy.
During apheresis you will be hooked up to a machine where your T cells will be separated from your other blood cells. After apheresis, your T cells will be sent to the lab where the CARantigen will be added. The apheresis procedure will take a few hours.
6. Bridging Therapy
Bridging therapy is cancer treatment given at any step before CAR T infusion to keep you healthy enough to get to infusion. You may need to get bridging therapy multiple times throughout your journey, or you may not need bridging therapy at all. Each round of bridging therapy can last 1 or more months, but in some cases, it may only span 1-2 weeks.
7. Conditioning Chemo
Before CAR T infusion, you will have conditioning chemotherapy (also known as lymphodepleting chemotherapy) to make room for your new CAR T cells. Conditioning chemotherapy is most often 3 days of chemo and 2 days of rest. However, the timeframe may vary if you are in a clinical trial.
8. CAR T Cell Infusion
At infusion, the new CAR T cells will be infused into your bloodstream. The CAR T cells will begin to attack the cancer cells in your body. Depending on your CAR T treatment, you may need to go to the hospital to receive the infusion. If it can be done in an outpatient clinic, the infusion appointment may take 20-30 minutes based on your health care team and facility.
9. First 4-8 Weeks After Infusion
CAR T infusion can cause side effects. You may have to stay in the hospital for up to 1 week following the infusion. You will also need to be monitored closely by your caregiver and stay near the treatment center for at least 4 weeks after infusion.
10. Weeks 9-52 After Infusion
You will need to follow up with the CAR T treatment team, your primary oncologist, or other specialists that understand your specialized needs after the treatment is complete. Most often, you will have monthly appointments for the first year after infusion. Then, you may have annual appointments for up to 15 years after infusion.
Side Effects of CAR T
The CAR T infusion can cause side effects. For at least 4 weeks after the infusion, you will need to be within 30-60 minutes of the CAR T center. You will also need to be monitored closely and should have your caregiver with you 24/7. You will continue to need caregiver support up to 8 weeks after the CAR T infusion. After 8 weeks, your doctor will usually let you know that you can restart some of your regular daily activities like driving and using heavy machinery or going back to work.
Some patients get severe side effects, while others get mild or no side effects. If you get severe side effects, it does not necessarily mean the treatment is working. If you get mild side effects, it does not necessarily mean the treatment is not working. Whether you have side effects or not does not predict whether CAR T is really working for you.
Patients who start CAR T cell therapy will be told about all of the side effects they might have. It is very important that patients tell their doctors about any side effects they experience. Most side effects can be managed if they are treated early.
Cytokine Release Syndrome
Your new CAR T cells will start working in your immune system right away. This can cause your immune system to go into overdrive and release molecules called cytokines. If your immune system releases a lot of cytokines, you may develop flu-like symptoms, such as:
- Muscle aches and pains
- Low blood pressure
- Shortness of breath
- Increased heart rate
- Less urine than normal
- Body chills
- Night sweats
- Abnormal liver function
- Blood clots
Cytokines can also affect your brain and nervous system, which can cause another side effect known as neurological toxicities or neurotoxicities. You may not know or remember that you are having the symptoms of this side effect, but they can be very scary for your caregiver. Symptoms of neurotoxicity include:
- Difficulty walking
- Facial droop
- Seeing things that aren’t there (hallucinations)
- Problems finding the right words
Tumor Lysis Syndrome
Tumor lysis syndrome (TLS) is a condition that happens when cancer cells breakdown quickly, releasing chemicals into the blood. If your kidneys cannot remove these chemicals fast enough, you can develop this condition.
Another common side effect is prolonged low blood counts (cytopenias). This is common in the first few weeks because of conditioning (lymphodepleting) chemotherapy. However, you may have this for a longer period, which would become more obvious in the first 4-8 weeks after infusion. Developing cytopenia increases your risk of infection.
B Cell Aplasia
In most cases, the CAR T drug also attacks normal, healthy B cells, which causes B cell aplasia (low number of B cells). This makes it harder for your body to fight germs and can increase your risk of infection. To treat this side effect, you may need intravenous immunoglobulin infusions, also known as IVIG. This is only expected to occur in cancers that form in B cells, like myeloma and certain types of lymphomas.
CAR T Caregivers
All CAR T patients need to have a caregiver, or a trusted team of rotating caregivers, who can be with them 24/7, for at least 4 weeks. This person could be a family member or a friend. For some, this might be more than 1 person. If you don’t have 1 caregiver who can stay with you 24/7 for 4 weeks, you may have multiple caregivers who each stay with you for parts of the 4 weeks. If you do not have any caregivers who can stay with you, talk to the social worker at the CAR T center about what other options you have. You may be able to find and hire a health care aide to stay with you. After the 4 weeks following the CAR T infusion, you may still need caregiver support, as you will be unable to drive until 8 weeks after your CAR T infusion.
The CAR T treatment team will meet with your caregiver to talk about their role and responsibilities. Most often, centers require that your caregiver is:
- 18 years old or older
- Someone who can commit to be with you 24 hours a day, 7 days a week
- Able to understand what is required of them
- Someone who is responsible and who you can count on
- In good health
- Available for 4-8 weeks
- Able to line up a backup person they can call if something happens to them
The treatment team will want to be sure that your caregiver has certain skills and abilities so they can observe any side effects that you may have and best help you during this process.
To best support you, your caregiver is going to need their own community of support. Your caregiver should seek and identify friends or family members they can turn to. They can also join a caregiver support group.
Right now, CAR T cell therapy is a very complex and expensive cancer treatment. It is available in over 150 cancer centers. If you do not live near one of these centers, you should ask whether there is a patient assistance program available to pay for travel costs. Ask if your insurance will cover the drug and hospital costs. Ask if you qualify to get this therapy as part of a clinical trial where the drug cost is covered. You may have to travel long distances to get this therapy. Ask if you can get assistance to cover travel, lodging, and food costs for you and a caregiver. For more help on coping with cancer costs, call 844-792-6517 or visit our webpage about managing cancer costs.
CAR T Clinical Trials
Clinical trials are research studies with patients. They are a chance for you to play an active role in health care and research, while also helping future patients. The goal of cancer clinical trials is to improve treatments and the quality of life for people with cancer. Your doctor may refer you to a CAR T clinical trial, or you may be interested in finding one on your own. Getting into clinical trials can be complicated and complex.
Clinical trials for CAR T can test for different things.
- Some clinical trials are testing if an already approved CAR T therapy works in other types of cancers.
- Others are testing a new type of CAR T therapy.
- Depending on the type of cancer you have, clinical trials may be the only way for you to receive CAR T therapy.
- There are also clinical trials that study the management of side effects.
Dozens of CAR T clinical trials are now enrolling patients in the United States. Even if you are not eligible for an approved CAR T treatment, you may be eligible for a clinical trial. Find a full list of these trials.
Guía para cuidadores y pacientes de terapia CAR T
Guía paso a paso para los pacientes adultos de terapia de células T con receptor de antígeno quimérico (CAR T) y sus cuidadores, desde la referencia al tratamiento hasta el proceso de seguimiento. La información en esta guía puede ayudarle a usted y a su cuidador a planificar y preparar todos los pasos a seguir durante el proceso de la terapia CAR T.