CAR T Cell Therapy: A Guide for Adult Patients & Caregivers

This guide is designed to help you and your loved ones understand what to expect throughout your chimeric antigen receptor (CAR) T cell therapy. It’s not meant to replace conversations with your CAR T team. Your CAR T team will teach you about your therapy and what to expect. You can use this guide to help you remember and refer to it throughout the therapy process.

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Welcome and Overview

In this guide, we’ll explain some of the challenges you might have over the course of your CAR T cell therapy and recovery. But, this doesn’t mean you’ll have all of them. It’s important not to compare yourself to other people you know or have heard of who had CAR T cell therapy. Everyone is unique.

CAR T cell infusions can be done safely whether you’re staying in the hospital (inpatient) or not staying in the hospital (outpatient). This guide has information about both inpatient and outpatient infusions. Your doctor will talk with you about whether an outpatient infusion is an option for you.

CAR T cell therapy is a long process. Getting ready for your infusion is just the first part of your journey. If you have an inpatient infusion, you’ll be in the hospital 24 hours a day before, during, and for some time right after your infusion. If you have an outpatient infusion, you and your caregiver(s) will stay at an apartment near the hospital approved by your doctor or at a furnished apartment at MSK’s 75th Street Patient Residence. These things will be discussed in more detail in this guide.

You’ll have a large healthcare team working together to care for you as you go through each phase of your CAR T cell therapy. It’s normal to have many emotional changes during your CAR T cell therapy process. Your CAR T team includes many providers, including social workers, chaplains, psychiatrists, and members of MSK’s Integrative Medicine Service. All these healthcare providers are available to support and help you and your caregiver(s) cope with what you may feel.

The importance of communication

It’s very important to communicate with your CAR T team and your caregiver about how you’re feeling. This includes how you’re feeling both physically and emotionally. If anything is bothering you, even if it seems small, tell a member of your CAR T team. It’s very important not to let things build up. If you do, small issues can become more of a problem. The more information you share with your CAR T team, the more they can help you.

Below are some of the ways you can communicate with your CAR T team.

Over the phone

Between 9:00 am and 5:00 pm, call your doctor’s office. After 5:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.

If you’re having an outpatient CAR T cell infusion

If it’s between 9:00 am and 7:00 pm, call the Cellular Immunotherapy Unit at 646-608-3150. After 7:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.

In person

If you’re in the hospital, talk with any member of your inpatient healthcare team or ask to speak with the Charge Nurse, Clinical Nurse Specialist, or Nurse Leader. While you’re inpatient, it’s important to talk with your inpatient team, not call the outpatient office. You should also choose 1 caregiver to call the nursing station for updates. That person can share the information with the rest of your friends and family. You’ll be given the nursing station phone number when you’re admitted to the hospital.

Via MyMSK

MyMSK is MSK’s patient portal. You can use it to check your appointment schedule, request a prescription refill, contact a healthcare provider, and find educational information. Never use MyMSK to communicate any symptoms to your healthcare team.

Instructions about how to enroll in MyMSK are printed on the bottom of your appointment print out. You can also read the resource Communicating with Your Healthcare Team Using MyMSK.

How to use this guide

There’s a lot of information in this guide. Read the entire guide at least once, including the additional resources included in the back. You may find it easier to read a few sections at a time rather than trying to read the whole guide at once. We encourage you to refer to this guide as your treatment progresses.

It’s a good idea to highlight or write notes on anything you don’t understand or have a question about. There’s no such thing as a silly question, so please ask about anything that’s on your mind.

We’ve done our best to limit the number of medical terms in this guide. If you don’t understand one of the medical terms in this guide, ask your healthcare provider. You can also search the National Cancer Institute (NCI) Dictionary of Cancer Terms.

Antigen and T cell basics

About antigens

Figure 1. Antigens on a virus and bacterium

Figure 1. Antigens on a virus and bacterium

Antigens are substances that activate (turn on) your immune system. Your immune system helps your body fight infections and other diseases.

Antigens are found on the surface of some things made inside your body, such as cells. They’re also found on the surface of some things from outside your body, such as bacteria and viruses (see Figure 1).

About T cells

T cells help your immune system tell which antigens don’t belong in your body. T cells are a type of white blood cell (lymphocyte).

T cells have receptors that attach to certain antigens. Once a T cell attaches to an antigen, it sends messages to other cells in your immune system. These cells help kill the thing with the antigen and get it out of your body.

About chimeric antigen receptor (CAR) T cells

CAR T cells are T cells that have been genetically modified in a lab so they attach to antigens on cancer cells (see Figure 2). Once a CAR T cell attaches to the cancer cell, your immune system sends other types of immune cells to kill the cancer cell and get it out of your body.

Figure 2. CAR T cell attaching to cancer cell

Figure 2. CAR T cell attaching to cancer cell

Understanding your autologous CAR T cell therapy

Autologous means “from yourself.” With autologous CAR T cell therapy, some of your T cells will be collected (harvested) from your blood. They’ll be sent to a lab to have a new gene added to them. This is called genetic modification. The new gene will help them find and kill cancer cells. Once the T cells have this new gene, they’re called CAR T cells.

Once the CAR T cells are ready, you’ll get low doses of chemotherapy. This will help get your body ready so the CAR T cells can work as well as possible. It’s not done to kill cancer cells. Once your body is ready, the CAR T cells will be infused (put) into your bloodstream.

For more information about what to expect, read the section “Phases of CAR T Cell Therapy.”

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Getting Ready for Your CAR T Cell Therapy

Your initial consultation visit

During your initial consultation visit, you’ll meet with your doctor and other members of your CAR T team. Your doctor will review your medical and surgical history, do a physical exam, and talk with you about what they think is the best treatment plan for you. They might also discuss this plan with other CAR T doctors to make sure everyone agrees on the best plan for you.

Blood donor room appointment

You’ll have an appointment in the Blood Donor Room to see if your veins are big enough for your T cells to be collected from a vein in your arm. If your veins aren’t big enough, a type of intravenous (IV) catheter called a leukapheresis (LOO-kuh-feh-REE-sis) catheter will be used for your T cell collection.

The donor room nurse will tell your healthcare team if you need a leukapheresis catheter. If you do, your healthcare team will give you more information. You can also read the section “Phase 1: T Cell Collection” for more information.

Getting ready for your CAR T cell therapy

After your initial consultation visit, you’ll start making practical, physical, and emotional preparations for your CAR T cell infusion. Here’s a list of things that will happen and things you might need to do to get ready:

  • Learn about your CAR T cell therapy. The information your CAR T team will go over with you is meant to help you learn, not scare you. Make a note of anything you don’t understand about your CAR T cell therapy, anything in this guide that isn’t clear, and any other questions you have.
  • Choose a caregiver. Identify a family member or friend to act as your caregiver. Make sure this person understands what the role involves. Give your caregiver a copy of this guide and ask them to read it at least once. Read the section “Your Caregiver” for more information.
  • Fill out a Health Care Proxy form. A health care proxy is a legal document that identifies the person who will speak for you if you can’t communicate for yourself. This person is known as your health care agent. This person can be different from your caregiver. For more information, talk with your social worker or any other member of your CAR T team. You can also read the resource Advance Care Planning.
  • Meet with a social worker. Your social worker will explain the psychological, emotional, and financial support services offered at MSK.
  • Arrange for disability or a leave of absence from work. If you’re working, decide if you want to go on disability or take a leave of absence. You should plan to be away from work for about 6 months, but the exact length of time is different for everyone.
  • Arrange for childcare and pet care, if needed. If you have concerns about talking with your children about your CAR T cell therapy, your social worker can help guide you.
  • Have your pretreatment evaluation. You’ll have a series of medical tests. Your clinical nurse coordinator will talk with you about which tests are needed. Your doctor’s office coordinator will work with you to try to schedule these tests at a time that works well for you.
  • Meet with a clinical dietitian nutritionist, if needed. If you have specific nutritional needs, you’ll meet with a clinical dietitian nutritionist to talk about your diet and safe food handling. If you want to meet with a clinical dietitian nutritionist, ask your nurse for a referral.
  • Meet with a pharmacist. The pharmacist will go over all the medications you’ll take before and after your CAR T cell therapy.

Coping with being away from your children

Whether you’re having an inpatient or outpatient CAR T cell infusion, you will probably spend more time away from your children than usual. Being away from your children will be hard for you and your family. We strongly recommend that you talk with your social worker about your concerns and come up with a plan to keep strong ties to your children during your treatment.

Below are some things that others have done to stay in contact with their children during their treatment:

  • Talk with your children regularly using programs or apps like Skype, Google Hangouts, or FaceTime. Set up a time that you talk to them each day, such as when they get home from school and before they go to bed. Get into a routine of using the computer to see and talk to them.
  • Paint or make other crafts to send home. Ask a member of your healthcare team to arrange for volunteers from the Patient Recreation Center to bring you supplies.
  • Use your cell phone or a tape recorder to record yourself reading your children’s favorite stories. Upload these recordings to the web, give them to your caregiver, or e-mail them to your children. They can read along with these stories while listening to your voice.
  • Keep copies of your children’s favorite stories with you in your hospital room. At night, you can use Skype to read along with them before they go to sleep.
  • Decorate your hospital room with your children’s artwork and pictures of your family.
  • Give your children a special coloring book or journal for times when they miss you or when feelings are difficult. Your caregiver can bring their work to you. You can talk with your children about them over Skype or on the phone.

We know that nothing will replace physical contact between you and your children, but we strongly encourage you to use all the technology that’s available to maintain a strong bond with them while you’re away.

For more help maintaining your relationship with your children, contact your social worker.

Your CAR T team

A team of healthcare providers will care for you throughout your CAR T cell therapy. You’ll meet many of them as you go through your CAR T cell therapy. You might not meet some members, such as your doctor’s office assistant, laboratory staff, or the CAR T cell service coordinator, but know that they’re all working to help you. Below is a list of your CAR T team members and their roles.

  • An attending doctor will be in charge of your care throughout your treatment. Even though 1 specific doctor will be your primary outpatient doctor, different doctors might care you for while you’re in the hospital.
  • A fellow is a doctor who has finished general training and is getting more training in cancer care.
  • An advanced practice provider (APP) is a healthcare provider who works with your doctor to provide care. They can give medical treatments and prescribe medications. They may also sometimes see you instead of your doctor. APPs include nurse practitioners (NPs), physician assistants (PAs), and certified registered nurse anesthetists (CRNAs).
  • A clinical nurse coordinator is a nurse who will communicate and work with you, your caregiver, and your team of doctors to organize and schedule the testing, procedures, and consultations with other professionals needed before your infusion. Your clinical nurse coordinator will teach you about your specific treatment plan.
  • Nurses will work with you when you’re seen at outpatient visits and while you’re in the hospital. They’re registered nurses (RNs) who are trained in the care of people having stem cell transplants and CAR T cell therapy. Each outpatient nurse works with attending doctors and will meet you at the time of your initial consultation visit. Your outpatient nurse will see you at many of your outpatient visits after discharge and will follow you along your CAR T cell journey. During your treatment, either inpatient or outpatient, you’ll have a team of primary nurses that will care for you. The nurses work 12-hour shifts and try to maintain consistency with who will be working with you. Both the inpatient and outpatient nurses work closely with your healthcare team to manage any symptoms and can help you with any questions or concerns you may have.
  • A nursing assistant or patient care technician works with your nursing team to give basic care and support.
  • A hospitalist is a doctor who sees people only while they’re in the hospital. At MSK, there’s a hospitalist on duty all night.
  • A clinical pharmacist who specializes in the care of people having stem cell transplants and CAR T cell therapy will review your medications with you and your caregiver, teach you how to take them properly, and tell you about any side effects they might cause.
  • A social worker will help you, your family, and your friends manage the stress that comes with going through CAR T cell therapy. Social workers understand the issues faced by people having treatment. They’re available to listen, offer counseling, and refer you or your loved ones to other resources and services, if they’re needed.
  • A CAR T cell service coordinator will work with you and your insurance company to figure out what your treatment benefits are. This person is familiar with the insurance issues faced by people having CAR T cell therapy. Each insurance company has its own policies and requirements. When your insurance company needs authorization, your CAR T cell service coordinator will help with that process.
  • An office coordinator provides administrative support to your attending doctors and their nurses. You might speak with them when you submit information, are scheduling an appointment, or have questions for your CAR T team. Office coordinators are sometimes called physician office assistants (POAs).
  • A care coordinator works in an outpatient area and monitors the flow of patients in and out of the clinic. They make sure that you have all the tests, scans, and treatments your medical team orders either completed or scheduled. Care coordinators also manage your medical records and coordinate your future appointments. Care coordinators are sometimes called session assistants (SAs).
  • A clinical research coordinator works with your healthcare team. They will talk with you and explain some of the research studies at MSK that you might be able to participate in. The studies mostly involve collecting samples or data. Clinical research coordinators are sometimes called research study assistants (RSAs).
  • A patient representative is a liaison between you, your family, and the hospital staff. They’re here to protect your rights and help explain hospital policies and procedures. Patient representatives can help you with any concerns about your care and help you communicate with members of your CAR T team.
  • A clinical dietitian nutritionist is a food and nutrition expert who will assess your nutritional status, talk with you and your caregiver about your diet, and give you advice about changing your diet to help manage your symptoms and side effects.
  • A physical therapist (PT), occupational therapist (OT), or both will see you while you’re in the hospital. The PT will work with you to help you keep up your strength and stamina during your recovery. The OT will work with you to help you keep doing your daily activities.
  • A room service associate will explain how the room service works, including the hours it’s available and how to use it. They will make sure you get the right menus and deliver your meals.
  • A case manager will see you while you’re in the hospital, give updates to your insurance company, and help you arrange home care as needed.

Your caregiver

Everyone having CAR T cell therapy will benefit from having support from a caregiver before, during, and after their infusion. Caregivers are usually a family member or a close friend. They need to be available to help with basic day-to-day medical and practical issues and provide emotional support.

For outpatient CAR T cell infusions

To have an outpatient CAR T cell infusion, you must have a clear caregiver plan. There are no exceptions. Your CAR T team will talk with you about this. Your caregiver must be available 24 hours a day, 7 days a week during your treatment. Your CAR T team will give your caregiver specific instructions about what they need to do. Some of these responsibilities will include the tasks below.

Medical support
  • Gathering information from your CAR T team.
  • Making sure you take your medications and keeping a written record of when you take them.
  • Taking your temperature every 4 hours while you’re awake and away from the Cellular Immunotherapy Unit.
  • Keeping a written record of your temperatures.
  • Keeping a written record of how much you drink every day.
  • Knowing how to take care of your central venous catheter (CVC).
  • Noticing any changes in your condition.
  • Telling your CAR T team about any new symptoms you have or changes in your condition.
  • Calling for medical help in an emergency.
Practical support
  • Taking you to and from your daily visits at the hospital.
  • Dealing with financial and insurance issues.
  • Handling food safely to prevent foodborne illness (food poisoning).
  • Keeping the place you’re staying clean.
  • Keeping family members and friends up to date about your condition.
  • Managing the number of visitors you have and keeping you away from anyone who’s sick.
Emotional support
  • Paying attention to your moods and feelings.
  • Communicating with you and listening to you.
  • Understanding your needs and your decisions.
  • Feeling comfortable contacting your healthcare team if they’re worried about your emotional state.

For an outpatient CAR T cell infusion, being a caregiver is a full-time, 24-hour, 7-day a week responsibility. It’s tiring, demanding, and stressful, especially if your condition, schedule, or treatment changes. Your CAR T team will do everything they can to help your caregiver care for you. They can also refer your caregiver to other support services to help them manage their role.

During your CAR T cell therapy, your caregiver must take you to and from your daily visits to the Cellular Immunotherapy Unit. They may not be able to work and will need to stay with you for most of the day and night. While you’re in the Cellular Immunotherapy Unit for daily visits, your caregiver can take some personal time. We strongly recommend that they do this.

For inpatient CAR T cell infusions

If you’ll be admitted to the hospital for your CAR T cell infusion, it’s important to have a caregiver plan for when you’re discharged from the hospital. Although the time frame for 24/7 caregiver support may vary, it’s generally recommended that you have a full-time caregiver for the first 2 weeks after discharge. Some of your caregiver’s responsibilities will include the tasks below. Your healthcare team will give you more information.

Medical support
  • Making sure you take your medications.
  • Making sure you’re drinking enough and getting enough nutrition.
  • Noticing any changes in your condition.
  • Calling for medical help in an emergency.
Practical support
  • Taking you to and from your daily visits at the hospital.
  • Dealing with financial and insurance issues.
  • Handling food safely to prevent foodborne illness (food poisoning).
  • Keeping the place you’re staying clean.
  • Keeping family members and friends up to date about your condition.
  • Managing the number of visitors you have and keeping you away from anyone who’s sick.
Emotional support
  • Paying attention to your moods and feelings.
  • Communicating with you and listening to you.
  • Understanding your needs and your decisions.
  • Feeling comfortable contacting your healthcare team if they’re worried about your emotional state.

Choosing the right caregiver

It’s important for your caregiver to keep a positive attitude, stay calm, and be flexible while providing you with the support and encouragement you need. It’s important for you to understand that the caregiver role is challenging and that your caregiver might at times feel overwhelmed by the responsibilities.

Take time now to think about who you want to be your caregiver. It should be someone you trust and who can take the time to care for you. Your caregiver should be someone who can give you the practical and emotional support you need. If you don’t have just 1 person to serve as your caregiver, it’s okay to have more than 1 person share the role. But, it’s best to limit the number of caregivers to 1 or 2 people.

‌  If your caregiver gets sick or shows any signs of a cold or flu (such as a cough, fever, or sore throat) 1 week before or any time during your CAR T cell therapy, tell your CAR T team right away.
 

Resources for caregivers

Caregivers can have physical, emotional, spiritual, and financial distress. Resources and support are available to help manage the many responsibilities that come with caring for a person having CAR T cell therapy. For support resources and information, contact your social worker. You may also find the resource Caregivers' Guide for Bone Marrow/Stem Cell Transplant helpful.

At MSK, our Caregivers Clinic provides support specifically for caregivers who are having a hard time coping with the demands of being a caregiver. For more information, call Dr. Allison Applebaum at 646-888-0200 or go to www.mskcc.org/cancer-care/doctor/allison-applebaum.

Your pretreatment evaluation

Before you become a CAR T cell therapy candidate, your overall physical condition will be evaluated. This will help us make sure you’re ready for treatment. It will also help your CAR T team notice any changes later.

You’ll need to make several trips to MSK to have tests done. We often call this the “work-up” or “restaging” period. During the work-up, you’ll need to have some, but not always all, of the following tests:

  • Chest x-ray. This is done to make sure your lungs are clear and there’s no sign of infection or other problems.
  • Blood tests. These are done to check several things, including your kidney function, liver function, blood counts, and if you’ve been exposed to certain viruses.
  • Urine test. This is done to see if there’s anything abnormal in your urine (pee).
  • Electrocardiogram (EKG) and echocardiogram (ECHO). These are done to give your CAR T team information about your heart.
  • Pulmonary function tests (PFTs). These are breathing tests that measure how well your lungs work.
  • Computed tomography (CT) scan. This is a radiology test that gives more detailed images of soft tissue and bone than a standard x-ray. Sometimes, CT scans use contrast dye that you drink or have injected into your veins. It’s very important to tell your doctor if you know you have an allergy to contrast dye, seafood, or iodine. If you have a mild allergy, you can still have contrast dye, but you’ll need medications before getting the dye to prevent a reaction.
  • Positron emission tomography (PET) scan. This is a radiology test that’s used to look at certain types of cancer, as well as your organs and how they work in your body.
  • Brain magnetic resonance imaging (MRI) scan. This is done to look at your brain and how your brain works.
  • Skeletal survey. This is done to look for bone damage caused by cancer. It’s usually only done for people who have multiple myeloma. It involves taking x-rays of the major bones in your body. It can take a few hours.
  • Bone marrow aspiration and biopsy. A bone marrow aspirate is a small sample of bone marrow, usually taken from the back of your hip. Your hip will be numbed, a needle will be put into the bone marrow, and a small amount of bone marrow will be taken out. A bone marrow biopsy might be done at the same time. This biopsy involves collecting a tiny piece of bone for examination. This is done to check how well your bone marrow is making cells and to look for any sign of cancer in the marrow.

Your doctor or nurse will explain any other tests you might need.

These tests are usually done in the 30 days before your CAR T cell infusion (Day -30 onwards), but sometimes the pretreatment evaluation can take longer. Your CAR T team will work with you and your caregiver to schedule the tests. The results of the tests will be used to plan your treatment and make sure it’s safe to start your treatment.

Your preadmission appointment

Once your pretreatment evaluation is finished and you have the date of your CAR T cell infusion, you’ll have your preadmission appointment. This appointment is usually 1 to 2 weeks before your scheduled CAR T cell infusion. At this appointment:

  • Your doctor will review your treatment plan with you.
  • Your doctor will go over the consent forms and you’ll sign consent for your CAR T cell therapy (if you haven’t already).
  • You’ll meet with your clinical nurse coordinator. They’ll give you a calendar outlining your treatment plan and answer your questions.
  • You’ll meet with your clinical pharmacist again to review the medications you’ll take during and after your CAR T cell therapy.
  • You may be asked to sign a consent form for a transfusion (if you haven’t already). This is because you may need blood or platelet transfusions when your blood counts are low after your treatment. For more information about blood transfusions, read the resource Frequently Asked Questions About Blood Transfusions.

‌  Between your preadmission appointment and when you’re admitted to the hospital, it’s very important to call your CAR T cell doctor’s office if you have any of the following:

  • Signs of a cold, such as:
    • A runny nose
    • Congestion
    • A cough
    • A fever of 100.4 °F (38.0 °C) or higher
  • Nausea (feeling like you’re going to throw up)
  • Vomiting (throwing up)
  • Diarrhea (loose or watery bowel movements (poop))
  • A toothache
  • An open wound (such as a wound that’s bleeding or not healing)
  • Any other new problem, even if it seems small

Your doctor will decide if your admission for CAR T cell therapy should be delayed. It could be very dangerous to start your chemotherapy while you have an infection, even if it’s just a cold. This is because your immune system won’t be able to fight the infection.

Having your central venous catheter (CVC) placed

You’ll need a CVC during your CAR T cell therapy. A CVC is a catheter (thin, flexible tube) that’s put into one of your larger veins. Outside your body, the catheter divides into 2 or 3 smaller tubes called lumens.

A CVC lets your CAR T team infuse your CAR T cells, take your blood, and give you fluids, electrolytes, blood transfusions, chemotherapy, and other medications without having to keep sticking you with a needle. Having a CVC will make your treatment much more comfortable.

There are 2 main types of CVCs:

Your doctor or nurse will tell you which type of CVC you’ll have. CVCs are usually removed 2 to 3 weeks after your CAR T cell therapy is finished.

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What to Expect in the Hospital

This section has basic information about what to expect if you’re admitted to the hospital during any part of your treatment. This applies whether you have an inpatient or outpatient CAR T cell infusion.

While you’re in the hospital

There are 2 transplant units in Memorial Hospital. The nurses on each unit are specially trained to care for people having stem cell transplants and CAR T cell therapy. All the same guidelines are followed on both units. You may need to change your room or floor while you’re in the hospital, but we try to avoid this as much as possible.

Your primary nursing team will care for you during your hospital stay. Nurses usually work 12-hour shifts starting at either 7:00 am or 7:00 pm. When nursing shifts change, your nurse will share information about what happened with you and your care during that shift with the nurse taking over.

The hospital environment

  • Follow any instructions that are specific to your floor.
  • Keep your hands clean. For more information, read the resource Hand Hygiene and Preventing Infection.
  • Your room will have Wi-Fi and a TV with cable channels.
  • You’ll be connected to an IV pole with electronic pumps during most of your hospital stay.
  • If you’re at risk for falling, someone will help you get to the bathroom. Your healthcare team will tell you more about how to keep from falling while you’re in the hospital. You can also read the resource Call! Don't Fall!.

Testing and evaluations

  • Before 6:00 am every day, a member of your healthcare team will weigh you and take a sample of your blood. Your blood will be checked to see how your white blood cells, red blood cells, and platelets are recovering. Other blood tests will be done as needed to check your kidney and liver function, check for infections, check the level of chemotherapy or other medications in your blood, and to help evaluate your overall condition.
  • A member of your healthcare team will take your vital signs (your blood pressure, heart rate, breathing, and pain level) every 4 hours, even during the night.
  • A member of your healthcare team will measure your urine throughout the day. It’s important that we know how much urine you’re making.
  • You will have tests to check your neurological (brain) function. For example, your nurse might ask you simple questions.

Visitors

  • Your family and friends are welcome to visit you. One caregiver can stay overnight with you. But, the following people shouldn’t visit you:
    • Anyone who has symptoms of an illness (such as a cough, rash, fever, or diarrhea).
    • Anyone who thinks they might be getting sick.
    • Anyone who could have recently been exposed to someone with an infectious illness.
  • All visitors must always clean their hands before entering your room.
  • Visitors and caregivers must use the visitor’s restroom in the hallway, not the restroom in your room. This is to minimize the spread of bacteria in your room.
  • Fresh-cut flowers and live plants aren’t allowed in your room. Please tell your family and friends not to bring or send them.

Exercise

Even though you’ll feel tired after your chemotherapy and CAR T cell infusion, you should still try to stay active and get out of bed every day. It’s important to be safe, so ask for help when you get up.

We encourage you to walk around the unit. You may need to wear a mask and gloves while you’re walking around. Your nurse will tell you if you also need to wear an isolation gown. Don’t leave the floor for walking or exercise.

A physical therapist will evaluate you early during your hospitalization and prescribe an exercise program that’s right for you.

Communication

Each room has a call bell system that’s monitored 24 hours and a day, 7 days a week. If you need something, use your call bell and say exactly what you need so we can send the right member of your healthcare team member to help you.

Diet

Your CAR T team will plan your diet. You’ll be given a menu and instructions on how to order your meals. Room service will deliver your meals to you.

If you keep kosher, have diabetes, or follow other special diets, tell your clinical dietitian nutritionist so we can prepare your meals properly. Your clinical dietitian nutritionist is also available to help you plan your meals.

Showering

You’ll be expected to shower daily. Your patient care technician will be in your room when you’re showering to help you and make sure you’re safe.

Mouth care

It’s important to take good care of your mouth. This will help to reduce infections and mouth sores. Your nurse will go over this with you. You can also read the resource Mouth Care During Your Cancer Treatment for more information.

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What to Expect in the Cellular Immunotherapy Unit

During an outpatient CAR T cell infusion, you’ll get most or all of your care in the Cellular Immunotherapy Unit. You’ll visit the unit every day and will only be admitted to the hospital if you need more care than can be given to you as an outpatient.

Arrive at the Cellular Immunotherapy Unit at your scheduled time. When you come to the unit, wear comfortable clothing that allows for easy access to your CVC, such as shirts that open at the front, sweatshirts, or large t-shirts. Don’t wear clothing that’s hard to take off or put back on.

  • After you check in and are taken to a room, your CAR T team will check your vital signs and weight and ask you about any symptoms you have. They’ll also examine you and check your blood counts, electrolyte levels, and kidney function.
  • After they examine you, you’ll wait in your room for your test results to be ready. This can take several hours. This is a good time for your caregiver to take a break, take some personal time, or run errands. You’ll be safe in the care of your treatment team. We highly recommend that your caregiver leave the hospital and take this time to relax. You’ll have an entertainment unit with a TV and computer to pass the time. Your meals will be provided for you.
  • Once they get the results from your blood tests (sometimes called “labs”), your CAR T team will make decisions about your care. The rest of your visit that day will depend on your test results. Based on your test results:
    • Your healthcare provider may give you fluids through your IV.
    • Your healthcare provider may give you an infusion of platelets, red blood cells, or other blood components.
    • Your healthcare provider may change some of your medications.
    • Your treatment could be left as is.

You’ll stay in the unit until all the treatments you need are completed, and then your caregiver will take you back to your nearby apartment or the 75th Street Residence. There, your caregiver will continue to monitor your temperature and how much you drink.

For more information about the Cellular Immunotherapy Unit, read the resource About Your Appointments in MSK’s Cellular Immunotherapy Unit.

What to bring

When you come to unit every day, bring the following:

  • A list of all prescription and nonprescription medications you’re taking, along with dosages and how often you take them. This should include patches, creams, vitamins, nutritional supplements, herbal products, and over-the-counter medications.
  • All the prescription medications you were told to take during your CAR T cell therapy.
  • Your Outpatient Cellular Therapy Temperature & Liquid Intake Log. Your caregiver will use this to keep track of your temperature and liquid intake while you’re away from the unit.
  • Books, newspapers, an audio player, a laptop, or tablet computer—whatever you need to pass the time.
  • A notebook to write down information and any questions you or your caregiver have.

What to do in your home or apartment

When you’re not in the Cellular Immunotherapy Unit, your caregiver will be responsible for caring for you.

Carry your Outpatient Cellular Therapy Emergency Card with you

If you’re having an outpatient CAR T cell infusion, you will get an Outpatient Cellular Therapy Emergency Card. Keep this card with you at all times. It has important information about who to call and where to go if you have a medical emergency.

If you need emergency medical care, show this card to the medical professional helping you.

Keep track of how much you drink

Drink 2 liters (64 ounces) of liquids every day. Try to drink small amounts throughout the day. Your caregiver must keep track of all the liquids you drink in the Outpatient Cellular Therapy Temperature & Liquid Intake Log.

Keep track of your temperature

From the time you start getting your chemotherapy, your caregiver must take your temperature every 4 hours while you’re awake. You’ll be given a thermometer.

‌  If your fever is 100.4 °F (38 °C) or higher, your caregiver needs to take you to Urgent Care Center as instructed in your Outpatient Cellular Therapy Emergency Guide. While you’re on your way there, call one of the numbers listed below.

  • If it’s between 8:00 am and 7:00 pm, call the Cellular Immunotherapy Unit at 646-608-3150.
  • If it’s after 7:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.

Watch for bleeding

If you have any bleeding, always tell someone from your CAR T team. If you notice that you’re bleeding and you’re not in the unit, take the following steps right away:

  1. Apply direct pressure on the bleeding site. If you’re bleeding from your nose, also apply ice over the bridge of your nose.
  2. After applying pressure, follow the Outpatient Cellular Therapy Emergency Guide.
    • If it’s between 8:00 am and 7:00 pm, call the Cellular Immunotherapy Unit at 646-608-3150.
    • If it’s after 7:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.

Your care team will give you more instruction depending on the specific type of CAR T cell you get.

‌  Call your doctor right away if you have any of the following while you’re not in clinic:

  • Black bowel movements, blood in your bowel movements, or rectal bleeding
  • Blood in your urine
  • A headache that doesn’t get better, blurred vision, or dizziness
  • Coughing up blood, vomiting blood, or a nosebleed that doesn’t stop after a few minutes with applied pressure or ice

Move around and exercise

Even though you’ll feel tired after your chemotherapy and CAR T cell infusion, you should still try to stay active. A physical therapist will talk with you and prescribe an exercise program that’s right for you.

For more information about why it’s important to stay active and what your healthcare team can do to help, read the resource Staying Active During Stem Cell Transplant.

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Phases of CAR T Cell Therapy

There are 6 phases of CAR T cell therapy.The following table gives a summary of each phase. Keep reading for more information about each of the phases.

Phase Description
Phase 1: T cell collection

Some of your T cells are collected from your blood. The T cells are then sent to a lab to be genetically modified.

T cell collection is done about 4 to 6 weeks before your infusion. It takes about 2 to 4 hours.

Phase 2: T cell modification

While your T cells are being genetically modified into CAR T cells, you will have your pretreatment evaluation and pretreatment testing. You will also use this time to finish planning for your CAR T cell infusion and recovery.

You might also get other treatment during this time to lower your disease level before your CAR T cell treatment begins.

T cell modification takes about 3 to 4 weeks.

Phase 3: Lymphodepleting chemotherapy (also called conditioning)

Once your CAR T cells arrive at MSK, you will get chemotherapy to get your body ready for them.

Lymphodepleting chemotherapy is given about 3 days before your infusion. Your CAR T team will tell you how long it will take.

Phase 4: CAR T cell infusion

Your CAR T cells will be infused into your bloodstream. This might be done in the Cellular Immunotherapy Unit or in the hospital.

CAR T cell infusion takes about 5 to 30 minutes.

Phase 5: Early recovery

You will have appointments daily or every few days. Your CAR T team will see how you’re doing and manage your side effects. You will stay in the hospital or nearby.

Early recovery lasts for about 4 weeks after your infusion.

Phase 6: Long-term recovery

You will have appointments every few weeks or months. Your CAR T team will see how you’re doing and manage your side effects. You will come back to MSK for these appointments.

If you’re coming from another hospital, you may be seen by the doctor who referred (sent) you to MSK in between your visits to MSK.

Long-term recovery lasts for about 100 days or longer after your infusion.

Phase 1: T cell collection

Your T cells will be collected in MSK’s Blood Donor Room. Your collection will take about 2 to 4 hours.

Before your collection

Have a leukapheresis catheter placed, if needed

If a leukapheresis catheter will be used for your T cell collection, it will be placed 1 to 2 days before your collection. Your nurse will give you information about what to expect. You can also read the resource About Your Tunneled Catheter.

The catheter will be put into a large vein in your upper chest. It’s usually removed a few hours after your collection.

Eat high-calcium foods

For 1 to 2 days before your collection, eat dairy products and other foods that are high in calcium. You should also bring a high-calcium snack to eat during your collection. This can help keep the level of calcium in your blood from getting too low during your collection. Your nurse will give you a list of foods that are high in calcium.

During your collection

Your collection will be done while you’re on a bed or in a recliner chair. If you want to, you can watch TV or read during your procedure. A family member or friend may sit with you. You might feel cold during the procedure, so blankets will be available to make you comfortable.

During your T cell collection, some of your blood will be collected from your bloodstream through an IV line or leukapheresis catheter. The blood will flow through a machine that filters out the T cells and other white blood cells. The rest of your blood will be given back to you through another IV line.

During your collection, your donor room nurse will watch for side effects and give you medications if you need them. If you get numbness or tingling in your fingertips or around your mouth, tell your donor room nurse. These are signs that your calcium level is low. Your donor room nurse can give you calcium tablets to help with this.

After your collection

If you had an IV line in your arm(s), your donor room nurse will remove it and apply a bandage to prevent bleeding. They will tell you when you can remove the bandage. If you’re still bleeding when you remove the bandage, apply gentle but firm pressure on the site for 3 to 5 minutes. Call your doctor if the bleeding doesn’t stop.

If a leukapheresis catheter was used for your collection, your donor room nurse will schedule an appointment for it to be removed soon after your collection.

Most people can go back to doing their regular activities right after their collection.

Phase 2: T cell modification

After your T cells are collected, they will be sent to a lab. There, they will have a new gene added to them that allows them to recognize the cancer cells. This is called modification. T cells that have been modified are called CAR T cells.

While your T cells are being modified, you will complete your pretreatment evaluation and preadmission testing. You may also have chemotherapy to control your cancer.

This is also a good time to finish planning for your CAR T cell therapy. It’s especially important to make sure you’ve made plans for where you will stay and who your caregiver will be during your CAR T cell therapy. Read the sections “Getting Ready for Your CAR T Cell Therapy” and “Your Caregiver” for more information.

Your CAR T cells will be ready about 3 to 4 weeks after your collection.

Phase 3: lymphodepleting chemotherapy (conditioning)

Once your CAR T cells arrive at MSK, you’ll get chemotherapy to help get your body ready for the CAR T cell infusion. This is called lymphodepleting chemotherapy. Lymphodepletion is the process of lowering your white blood cell numbers with chemotherapy. It’s done to help get your body ready for the CAR T cells.

Most people get their lymphodepleting chemotherapy in the Cellular Immunotherapy Unit. It’s usually done a few days before the CAR T cell infusion. Your clinical nurse coordinator will give you your schedule and talk with you about what to expect. Your schedule depends on your specific medications and treatment.

Phase 4: CAR T cell infusion

If you’re having an inpatient CAR T cell infusion, you’ll be admitted to the hospital. This usually happens the day before your infusion. Your infusion will be given while you’re in your hospital room.

If you’re having an outpatient CAR T cell infusion, your infusion will be given at the Cellular Immunotherapy Unit.

Before your infusion

The day of your CAR T cell infusion, you’ll have a general check-up and neurologic tests. You’ll also be given medications to help keep you from having a reaction to the infusion. If you don’t have a CVC, a staff member will place an IV line in one of your veins.

Your CAR T team will tell you what time you should expect to get the infusion.

During your infusion

Your nurse or doctor will give you the CAR T cell infusion through your CVC or IV line. The infusion can take as little as 5 minutes or up to 30 minutes, depending on your treatment plan. A staff member will be in the room with you for at least the first 15 minutes of your infusion. They will probably stay with you for the entire infusion.

After your infusion

After the CAR T cell infusion, you’ll be monitored closely for side effects. Cytokine release syndrome (CRS) and neurological changes are common side effects of a CAR T cell infusion.

CRS is a group of symptoms that happen when T cells attack cancer cells. Common symptoms of CRS include:

  • A fever of 100.4 °F (38 °C) or higher
  • Flu-like symptoms, such as:
    • Muscle aches
    • Headaches
    • Chills
  • Feeling unusually tired
  • Nausea or vomiting
  • A faster heart rate than usual
  • Feeling dizzy or lightheaded

Common neurologic changes include:

  • Confusion
  • Trouble finding words
  • Tremors
  • Seizures
  • Sleeping more than usual
  • Feeling very drowsy and responding more slowly than usual

Not everyone gets the same type of CAR T cell therapy, and everyone responds differently to each type of therapy.

These side effects are not permanent. Your care team will watch you carefully for side effects. They will manage any side effects you have. It’s very important for you or your caregiver to tell a member of your healthcare team if you think you’re having any of these side effects.

Phase 5: early recovery

The first 4 weeks after your CAR T cell infusion are considered the early recovery phase.

If you had an inpatient CAR T cell infusion, you will stay in the hospital for 1 to 2 weeks or longer after your infusion. How long you stay in the hospital depends on how your body reacts to the cells. Your CAR T team will care for you and keep watching for side effects. Some side effects require closer monitoring and may result in transferring you to the Intensive Care Unit (ICU). Once you’re ready, you will be discharged from the hospital. You will stay in an apartment near the hospital or at MSK’s 75th Street Patient Residence.

If you had an outpatient CAR T cell infusion, you will have daily appointments for the first 2 weeks after your infusion. Your appointments will be at the Cellular Immunotherapy Unit. During your visits, your CAR T team will check on how you’re doing and help manage any side effects you’re having. You will be admitted to the hospital, if needed.

Starting about 2 weeks after your infusion, you may be able to have appointments less often. This depends on how you’re feeling. Side effects are still common during this time, so it’s important to come to all of your scheduled appointments.

About 4 weeks after your CAR T cell infusion, you’ll start having your appointments in your physician’s regular clinic instead of the Cellular Immunotherapy Unit.

Phase 6: long term recovery

Long term recovery is different for everyone. It depends on your specific situation and how the cancer reacts to your CAR T cell therapy. Your CAR T team will tell you what to expect.

You’ll have appointments with your CAR T team about 30 days, 100 days, and 1 year after your CAR T cell infusion. During these appointments, you will have tests to check how you’re doing. These tests might include:

  • A physical exam
  • Blood tests
  • Imaging scans (such as a PET scan or CT scan)
  • Bone marrow aspiration and biopsy

Your CAR T team will use the results of these tests to plan your care during your recovery.

Your CAR T team will talk with you about going back to seeing your primary doctor during your long term follow-up. If you do start seeing your primary doctor, please be sure to update your CAR T team on how you’re doing.

Some people need to come back to the CAR T team for more care. This may include being seen in the outpatient clinic or being admitted to the hospital.

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Educational Resources

This section contains the educational resources we referred to throughout this guide. You can find them online, or you can ask a member of your CAR T team. You can also search for more educational materials on the Patient and Caregiver Education website.

This guide is designed to help you and your loved ones understand what to expect throughout your chimeric antigen receptor (CAR) T cell therapy. It’s not meant to replace conversations with your CAR T team. Your CAR T team will teach you about your therapy and what to expect. You can use this guide to help you remember and refer to it throughout the therapy process.

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Welcome and Overview

In this guide, we’ll explain some of the challenges you might have over the course of your CAR T cell therapy and recovery. But, this doesn’t mean you’ll have all of them. It’s important not to compare yourself to other people you know or have heard of who had CAR T cell therapy. Everyone is unique.

CAR T cell infusions can be done safely whether you’re staying in the hospital (inpatient) or not staying in the hospital (outpatient). This guide has information about both inpatient and outpatient infusions. Your doctor will talk with you about whether an outpatient infusion is an option for you.

CAR T cell therapy is a long process. Getting ready for your infusion is just the first part of your journey. If you have an inpatient infusion, you’ll be in the hospital 24 hours a day before, during, and for some time right after your infusion. If you have an outpatient infusion, you and your caregiver(s) will stay at an apartment near the hospital approved by your doctor or at a furnished apartment at MSK’s 75th Street Patient Residence. These things will be discussed in more detail in this guide.

You’ll have a large healthcare team working together to care for you as you go through each phase of your CAR T cell therapy. It’s normal to have many emotional changes during your CAR T cell therapy process. Your CAR T team includes many providers, including social workers, chaplains, psychiatrists, and members of MSK’s Integrative Medicine Service. All these healthcare providers are available to support and help you and your caregiver(s) cope with what you may feel.

The importance of communication

It’s very important to communicate with your CAR T team and your caregiver about how you’re feeling. This includes how you’re feeling both physically and emotionally. If anything is bothering you, even if it seems small, tell a member of your CAR T team. It’s very important not to let things build up. If you do, small issues can become more of a problem. The more information you share with your CAR T team, the more they can help you.

Below are some of the ways you can communicate with your CAR T team.

Over the phone

Between 9:00 am and 5:00 pm, call your doctor’s office. After 5:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.

If you’re having an outpatient CAR T cell infusion

If it’s between 9:00 am and 7:00 pm, call the Cellular Immunotherapy Unit at 646-608-3150. After 7:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.

In person

If you’re in the hospital, talk with any member of your inpatient healthcare team or ask to speak with the Charge Nurse, Clinical Nurse Specialist, or Nurse Leader. While you’re inpatient, it’s important to talk with your inpatient team, not call the outpatient office. You should also choose 1 caregiver to call the nursing station for updates. That person can share the information with the rest of your friends and family. You’ll be given the nursing station phone number when you’re admitted to the hospital.

Via MyMSK

MyMSK is MSK’s patient portal. You can use it to check your appointment schedule, request a prescription refill, contact a healthcare provider, and find educational information. Never use MyMSK to communicate any symptoms to your healthcare team.

Instructions about how to enroll in MyMSK are printed on the bottom of your appointment print out. You can also read the resource Communicating with Your Healthcare Team Using MyMSK.

How to use this guide

There’s a lot of information in this guide. Read the entire guide at least once, including the additional resources included in the back. You may find it easier to read a few sections at a time rather than trying to read the whole guide at once. We encourage you to refer to this guide as your treatment progresses.

It’s a good idea to highlight or write notes on anything you don’t understand or have a question about. There’s no such thing as a silly question, so please ask about anything that’s on your mind.

We’ve done our best to limit the number of medical terms in this guide. If you don’t understand one of the medical terms in this guide, ask your healthcare provider. You can also search the National Cancer Institute (NCI) Dictionary of Cancer Terms.

Antigen and T cell basics

About antigens

Figure 1. Antigens on a virus and bacterium

Figure 1. Antigens on a virus and bacterium

Antigens are substances that activate (turn on) your immune system. Your immune system helps your body fight infections and other diseases.

Antigens are found on the surface of some things made inside your body, such as cells. They’re also found on the surface of some things from outside your body, such as bacteria and viruses (see Figure 1).

About T cells

T cells help your immune system tell which antigens don’t belong in your body. T cells are a type of white blood cell (lymphocyte).

T cells have receptors that attach to certain antigens. Once a T cell attaches to an antigen, it sends messages to other cells in your immune system. These cells help kill the thing with the antigen and get it out of your body.

About chimeric antigen receptor (CAR) T cells

CAR T cells are T cells that have been genetically modified in a lab so they attach to antigens on cancer cells (see Figure 2). Once a CAR T cell attaches to the cancer cell, your immune system sends other types of immune cells to kill the cancer cell and get it out of your body.

Figure 2. CAR T cell attaching to cancer cell

Figure 2. CAR T cell attaching to cancer cell

Understanding your autologous CAR T cell therapy

Autologous means “from yourself.” With autologous CAR T cell therapy, some of your T cells will be collected (harvested) from your blood. They’ll be sent to a lab to have a new gene added to them. This is called genetic modification. The new gene will help them find and kill cancer cells. Once the T cells have this new gene, they’re called CAR T cells.

Once the CAR T cells are ready, you’ll get low doses of chemotherapy. This will help get your body ready so the CAR T cells can work as well as possible. It’s not done to kill cancer cells. Once your body is ready, the CAR T cells will be infused (put) into your bloodstream.

For more information about what to expect, read the section “Phases of CAR T Cell Therapy.”

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Getting Ready for Your CAR T Cell Therapy

Your initial consultation visit

During your initial consultation visit, you’ll meet with your doctor and other members of your CAR T team. Your doctor will review your medical and surgical history, do a physical exam, and talk with you about what they think is the best treatment plan for you. They might also discuss this plan with other CAR T doctors to make sure everyone agrees on the best plan for you.

Blood donor room appointment

You’ll have an appointment in the Blood Donor Room to see if your veins are big enough for your T cells to be collected from a vein in your arm. If your veins aren’t big enough, a type of intravenous (IV) catheter called a leukapheresis (LOO-kuh-feh-REE-sis) catheter will be used for your T cell collection.

The donor room nurse will tell your healthcare team if you need a leukapheresis catheter. If you do, your healthcare team will give you more information. You can also read the section “Phase 1: T Cell Collection” for more information.

Getting ready for your CAR T cell therapy

After your initial consultation visit, you’ll start making practical, physical, and emotional preparations for your CAR T cell infusion. Here’s a list of things that will happen and things you might need to do to get ready:

  • Learn about your CAR T cell therapy. The information your CAR T team will go over with you is meant to help you learn, not scare you. Make a note of anything you don’t understand about your CAR T cell therapy, anything in this guide that isn’t clear, and any other questions you have.
  • Choose a caregiver. Identify a family member or friend to act as your caregiver. Make sure this person understands what the role involves. Give your caregiver a copy of this guide and ask them to read it at least once. Read the section “Your Caregiver” for more information.
  • Fill out a Health Care Proxy form. A health care proxy is a legal document that identifies the person who will speak for you if you can’t communicate for yourself. This person is known as your health care agent. This person can be different from your caregiver. For more information, talk with your social worker or any other member of your CAR T team. You can also read the resource Advance Care Planning.
  • Meet with a social worker. Your social worker will explain the psychological, emotional, and financial support services offered at MSK.
  • Arrange for disability or a leave of absence from work. If you’re working, decide if you want to go on disability or take a leave of absence. You should plan to be away from work for about 6 months, but the exact length of time is different for everyone.
  • Arrange for childcare and pet care, if needed. If you have concerns about talking with your children about your CAR T cell therapy, your social worker can help guide you.
  • Have your pretreatment evaluation. You’ll have a series of medical tests. Your clinical nurse coordinator will talk with you about which tests are needed. Your doctor’s office coordinator will work with you to try to schedule these tests at a time that works well for you.
  • Meet with a clinical dietitian nutritionist, if needed. If you have specific nutritional needs, you’ll meet with a clinical dietitian nutritionist to talk about your diet and safe food handling. If you want to meet with a clinical dietitian nutritionist, ask your nurse for a referral.
  • Meet with a pharmacist. The pharmacist will go over all the medications you’ll take before and after your CAR T cell therapy.

Coping with being away from your children

Whether you’re having an inpatient or outpatient CAR T cell infusion, you will probably spend more time away from your children than usual. Being away from your children will be hard for you and your family. We strongly recommend that you talk with your social worker about your concerns and come up with a plan to keep strong ties to your children during your treatment.

Below are some things that others have done to stay in contact with their children during their treatment:

  • Talk with your children regularly using programs or apps like Skype, Google Hangouts, or FaceTime. Set up a time that you talk to them each day, such as when they get home from school and before they go to bed. Get into a routine of using the computer to see and talk to them.
  • Paint or make other crafts to send home. Ask a member of your healthcare team to arrange for volunteers from the Patient Recreation Center to bring you supplies.
  • Use your cell phone or a tape recorder to record yourself reading your children’s favorite stories. Upload these recordings to the web, give them to your caregiver, or e-mail them to your children. They can read along with these stories while listening to your voice.
  • Keep copies of your children’s favorite stories with you in your hospital room. At night, you can use Skype to read along with them before they go to sleep.
  • Decorate your hospital room with your children’s artwork and pictures of your family.
  • Give your children a special coloring book or journal for times when they miss you or when feelings are difficult. Your caregiver can bring their work to you. You can talk with your children about them over Skype or on the phone.

We know that nothing will replace physical contact between you and your children, but we strongly encourage you to use all the technology that’s available to maintain a strong bond with them while you’re away.

For more help maintaining your relationship with your children, contact your social worker.

Your CAR T team

A team of healthcare providers will care for you throughout your CAR T cell therapy. You’ll meet many of them as you go through your CAR T cell therapy. You might not meet some members, such as your doctor’s office assistant, laboratory staff, or the CAR T cell service coordinator, but know that they’re all working to help you. Below is a list of your CAR T team members and their roles.

  • An attending doctor will be in charge of your care throughout your treatment. Even though 1 specific doctor will be your primary outpatient doctor, different doctors might care you for while you’re in the hospital.
  • A fellow is a doctor who has finished general training and is getting more training in cancer care.
  • An advanced practice provider (APP) is a healthcare provider who works with your doctor to provide care. They can give medical treatments and prescribe medications. They may also sometimes see you instead of your doctor. APPs include nurse practitioners (NPs), physician assistants (PAs), and certified registered nurse anesthetists (CRNAs).
  • A clinical nurse coordinator is a nurse who will communicate and work with you, your caregiver, and your team of doctors to organize and schedule the testing, procedures, and consultations with other professionals needed before your infusion. Your clinical nurse coordinator will teach you about your specific treatment plan.
  • Nurses will work with you when you’re seen at outpatient visits and while you’re in the hospital. They’re registered nurses (RNs) who are trained in the care of people having stem cell transplants and CAR T cell therapy. Each outpatient nurse works with attending doctors and will meet you at the time of your initial consultation visit. Your outpatient nurse will see you at many of your outpatient visits after discharge and will follow you along your CAR T cell journey. During your treatment, either inpatient or outpatient, you’ll have a team of primary nurses that will care for you. The nurses work 12-hour shifts and try to maintain consistency with who will be working with you. Both the inpatient and outpatient nurses work closely with your healthcare team to manage any symptoms and can help you with any questions or concerns you may have.
  • A nursing assistant or patient care technician works with your nursing team to give basic care and support.
  • A hospitalist is a doctor who sees people only while they’re in the hospital. At MSK, there’s a hospitalist on duty all night.
  • A clinical pharmacist who specializes in the care of people having stem cell transplants and CAR T cell therapy will review your medications with you and your caregiver, teach you how to take them properly, and tell you about any side effects they might cause.
  • A social worker will help you, your family, and your friends manage the stress that comes with going through CAR T cell therapy. Social workers understand the issues faced by people having treatment. They’re available to listen, offer counseling, and refer you or your loved ones to other resources and services, if they’re needed.
  • A CAR T cell service coordinator will work with you and your insurance company to figure out what your treatment benefits are. This person is familiar with the insurance issues faced by people having CAR T cell therapy. Each insurance company has its own policies and requirements. When your insurance company needs authorization, your CAR T cell service coordinator will help with that process.
  • An office coordinator provides administrative support to your attending doctors and their nurses. You might speak with them when you submit information, are scheduling an appointment, or have questions for your CAR T team. Office coordinators are sometimes called physician office assistants (POAs).
  • A care coordinator works in an outpatient area and monitors the flow of patients in and out of the clinic. They make sure that you have all the tests, scans, and treatments your medical team orders either completed or scheduled. Care coordinators also manage your medical records and coordinate your future appointments. Care coordinators are sometimes called session assistants (SAs).
  • A clinical research coordinator works with your healthcare team. They will talk with you and explain some of the research studies at MSK that you might be able to participate in. The studies mostly involve collecting samples or data. Clinical research coordinators are sometimes called research study assistants (RSAs).
  • A patient representative is a liaison between you, your family, and the hospital staff. They’re here to protect your rights and help explain hospital policies and procedures. Patient representatives can help you with any concerns about your care and help you communicate with members of your CAR T team.
  • A clinical dietitian nutritionist is a food and nutrition expert who will assess your nutritional status, talk with you and your caregiver about your diet, and give you advice about changing your diet to help manage your symptoms and side effects.
  • A physical therapist (PT), occupational therapist (OT), or both will see you while you’re in the hospital. The PT will work with you to help you keep up your strength and stamina during your recovery. The OT will work with you to help you keep doing your daily activities.
  • A room service associate will explain how the room service works, including the hours it’s available and how to use it. They will make sure you get the right menus and deliver your meals.
  • A case manager will see you while you’re in the hospital, give updates to your insurance company, and help you arrange home care as needed.

Your caregiver

Everyone having CAR T cell therapy will benefit from having support from a caregiver before, during, and after their infusion. Caregivers are usually a family member or a close friend. They need to be available to help with basic day-to-day medical and practical issues and provide emotional support.

For outpatient CAR T cell infusions

To have an outpatient CAR T cell infusion, you must have a clear caregiver plan. There are no exceptions. Your CAR T team will talk with you about this. Your caregiver must be available 24 hours a day, 7 days a week during your treatment. Your CAR T team will give your caregiver specific instructions about what they need to do. Some of these responsibilities will include the tasks below.

Medical support
  • Gathering information from your CAR T team.
  • Making sure you take your medications and keeping a written record of when you take them.
  • Taking your temperature every 4 hours while you’re awake and away from the Cellular Immunotherapy Unit.
  • Keeping a written record of your temperatures.
  • Keeping a written record of how much you drink every day.
  • Knowing how to take care of your central venous catheter (CVC).
  • Noticing any changes in your condition.
  • Telling your CAR T team about any new symptoms you have or changes in your condition.
  • Calling for medical help in an emergency.
Practical support
  • Taking you to and from your daily visits at the hospital.
  • Dealing with financial and insurance issues.
  • Handling food safely to prevent foodborne illness (food poisoning).
  • Keeping the place you’re staying clean.
  • Keeping family members and friends up to date about your condition.
  • Managing the number of visitors you have and keeping you away from anyone who’s sick.
Emotional support
  • Paying attention to your moods and feelings.
  • Communicating with you and listening to you.
  • Understanding your needs and your decisions.
  • Feeling comfortable contacting your healthcare team if they’re worried about your emotional state.

For an outpatient CAR T cell infusion, being a caregiver is a full-time, 24-hour, 7-day a week responsibility. It’s tiring, demanding, and stressful, especially if your condition, schedule, or treatment changes. Your CAR T team will do everything they can to help your caregiver care for you. They can also refer your caregiver to other support services to help them manage their role.

During your CAR T cell therapy, your caregiver must take you to and from your daily visits to the Cellular Immunotherapy Unit. They may not be able to work and will need to stay with you for most of the day and night. While you’re in the Cellular Immunotherapy Unit for daily visits, your caregiver can take some personal time. We strongly recommend that they do this.

For inpatient CAR T cell infusions

If you’ll be admitted to the hospital for your CAR T cell infusion, it’s important to have a caregiver plan for when you’re discharged from the hospital. Although the time frame for 24/7 caregiver support may vary, it’s generally recommended that you have a full-time caregiver for the first 2 weeks after discharge. Some of your caregiver’s responsibilities will include the tasks below. Your healthcare team will give you more information.

Medical support
  • Making sure you take your medications.
  • Making sure you’re drinking enough and getting enough nutrition.
  • Noticing any changes in your condition.
  • Calling for medical help in an emergency.
Practical support
  • Taking you to and from your daily visits at the hospital.
  • Dealing with financial and insurance issues.
  • Handling food safely to prevent foodborne illness (food poisoning).
  • Keeping the place you’re staying clean.
  • Keeping family members and friends up to date about your condition.
  • Managing the number of visitors you have and keeping you away from anyone who’s sick.
Emotional support
  • Paying attention to your moods and feelings.
  • Communicating with you and listening to you.
  • Understanding your needs and your decisions.
  • Feeling comfortable contacting your healthcare team if they’re worried about your emotional state.

Choosing the right caregiver

It’s important for your caregiver to keep a positive attitude, stay calm, and be flexible while providing you with the support and encouragement you need. It’s important for you to understand that the caregiver role is challenging and that your caregiver might at times feel overwhelmed by the responsibilities.

Take time now to think about who you want to be your caregiver. It should be someone you trust and who can take the time to care for you. Your caregiver should be someone who can give you the practical and emotional support you need. If you don’t have just 1 person to serve as your caregiver, it’s okay to have more than 1 person share the role. But, it’s best to limit the number of caregivers to 1 or 2 people.

‌  If your caregiver gets sick or shows any signs of a cold or flu (such as a cough, fever, or sore throat) 1 week before or any time during your CAR T cell therapy, tell your CAR T team right away.
 

Resources for caregivers

Caregivers can have physical, emotional, spiritual, and financial distress. Resources and support are available to help manage the many responsibilities that come with caring for a person having CAR T cell therapy. For support resources and information, contact your social worker. You may also find the resource Caregivers' Guide for Bone Marrow/Stem Cell Transplant helpful.

At MSK, our Caregivers Clinic provides support specifically for caregivers who are having a hard time coping with the demands of being a caregiver. For more information, call Dr. Allison Applebaum at 646-888-0200 or go to www.mskcc.org/cancer-care/doctor/allison-applebaum.

Your pretreatment evaluation

Before you become a CAR T cell therapy candidate, your overall physical condition will be evaluated. This will help us make sure you’re ready for treatment. It will also help your CAR T team notice any changes later.

You’ll need to make several trips to MSK to have tests done. We often call this the “work-up” or “restaging” period. During the work-up, you’ll need to have some, but not always all, of the following tests:

  • Chest x-ray. This is done to make sure your lungs are clear and there’s no sign of infection or other problems.
  • Blood tests. These are done to check several things, including your kidney function, liver function, blood counts, and if you’ve been exposed to certain viruses.
  • Urine test. This is done to see if there’s anything abnormal in your urine (pee).
  • Electrocardiogram (EKG) and echocardiogram (ECHO). These are done to give your CAR T team information about your heart.
  • Pulmonary function tests (PFTs). These are breathing tests that measure how well your lungs work.
  • Computed tomography (CT) scan. This is a radiology test that gives more detailed images of soft tissue and bone than a standard x-ray. Sometimes, CT scans use contrast dye that you drink or have injected into your veins. It’s very important to tell your doctor if you know you have an allergy to contrast dye, seafood, or iodine. If you have a mild allergy, you can still have contrast dye, but you’ll need medications before getting the dye to prevent a reaction.
  • Positron emission tomography (PET) scan. This is a radiology test that’s used to look at certain types of cancer, as well as your organs and how they work in your body.
  • Brain magnetic resonance imaging (MRI) scan. This is done to look at your brain and how your brain works.
  • Skeletal survey. This is done to look for bone damage caused by cancer. It’s usually only done for people who have multiple myeloma. It involves taking x-rays of the major bones in your body. It can take a few hours.
  • Bone marrow aspiration and biopsy. A bone marrow aspirate is a small sample of bone marrow, usually taken from the back of your hip. Your hip will be numbed, a needle will be put into the bone marrow, and a small amount of bone marrow will be taken out. A bone marrow biopsy might be done at the same time. This biopsy involves collecting a tiny piece of bone for examination. This is done to check how well your bone marrow is making cells and to look for any sign of cancer in the marrow.

Your doctor or nurse will explain any other tests you might need.

These tests are usually done in the 30 days before your CAR T cell infusion (Day -30 onwards), but sometimes the pretreatment evaluation can take longer. Your CAR T team will work with you and your caregiver to schedule the tests. The results of the tests will be used to plan your treatment and make sure it’s safe to start your treatment.

Your preadmission appointment

Once your pretreatment evaluation is finished and you have the date of your CAR T cell infusion, you’ll have your preadmission appointment. This appointment is usually 1 to 2 weeks before your scheduled CAR T cell infusion. At this appointment:

  • Your doctor will review your treatment plan with you.
  • Your doctor will go over the consent forms and you’ll sign consent for your CAR T cell therapy (if you haven’t already).
  • You’ll meet with your clinical nurse coordinator. They’ll give you a calendar outlining your treatment plan and answer your questions.
  • You’ll meet with your clinical pharmacist again to review the medications you’ll take during and after your CAR T cell therapy.
  • You may be asked to sign a consent form for a transfusion (if you haven’t already). This is because you may need blood or platelet transfusions when your blood counts are low after your treatment. For more information about blood transfusions, read the resource Frequently Asked Questions About Blood Transfusions.

‌  Between your preadmission appointment and when you’re admitted to the hospital, it’s very important to call your CAR T cell doctor’s office if you have any of the following:

  • Signs of a cold, such as:
    • A runny nose
    • Congestion
    • A cough
    • A fever of 100.4 °F (38.0 °C) or higher
  • Nausea (feeling like you’re going to throw up)
  • Vomiting (throwing up)
  • Diarrhea (loose or watery bowel movements (poop))
  • A toothache
  • An open wound (such as a wound that’s bleeding or not healing)
  • Any other new problem, even if it seems small

Your doctor will decide if your admission for CAR T cell therapy should be delayed. It could be very dangerous to start your chemotherapy while you have an infection, even if it’s just a cold. This is because your immune system won’t be able to fight the infection.

Having your central venous catheter (CVC) placed

You’ll need a CVC during your CAR T cell therapy. A CVC is a catheter (thin, flexible tube) that’s put into one of your larger veins. Outside your body, the catheter divides into 2 or 3 smaller tubes called lumens.

A CVC lets your CAR T team infuse your CAR T cells, take your blood, and give you fluids, electrolytes, blood transfusions, chemotherapy, and other medications without having to keep sticking you with a needle. Having a CVC will make your treatment much more comfortable.

There are 2 main types of CVCs:

Your doctor or nurse will tell you which type of CVC you’ll have. CVCs are usually removed 2 to 3 weeks after your CAR T cell therapy is finished.

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What to Expect in the Hospital

This section has basic information about what to expect if you’re admitted to the hospital during any part of your treatment. This applies whether you have an inpatient or outpatient CAR T cell infusion.

While you’re in the hospital

There are 2 transplant units in Memorial Hospital. The nurses on each unit are specially trained to care for people having stem cell transplants and CAR T cell therapy. All the same guidelines are followed on both units. You may need to change your room or floor while you’re in the hospital, but we try to avoid this as much as possible.

Your primary nursing team will care for you during your hospital stay. Nurses usually work 12-hour shifts starting at either 7:00 am or 7:00 pm. When nursing shifts change, your nurse will share information about what happened with you and your care during that shift with the nurse taking over.

The hospital environment

  • Follow any instructions that are specific to your floor.
  • Keep your hands clean. For more information, read the resource Hand Hygiene and Preventing Infection.
  • Your room will have Wi-Fi and a TV with cable channels.
  • You’ll be connected to an IV pole with electronic pumps during most of your hospital stay.
  • If you’re at risk for falling, someone will help you get to the bathroom. Your healthcare team will tell you more about how to keep from falling while you’re in the hospital. You can also read the resource Call! Don't Fall!.

Testing and evaluations

  • Before 6:00 am every day, a member of your healthcare team will weigh you and take a sample of your blood. Your blood will be checked to see how your white blood cells, red blood cells, and platelets are recovering. Other blood tests will be done as needed to check your kidney and liver function, check for infections, check the level of chemotherapy or other medications in your blood, and to help evaluate your overall condition.
  • A member of your healthcare team will take your vital signs (your blood pressure, heart rate, breathing, and pain level) every 4 hours, even during the night.
  • A member of your healthcare team will measure your urine throughout the day. It’s important that we know how much urine you’re making.
  • You will have tests to check your neurological (brain) function. For example, your nurse might ask you simple questions.

Visitors

  • Your family and friends are welcome to visit you. One caregiver can stay overnight with you. But, the following people shouldn’t visit you:
    • Anyone who has symptoms of an illness (such as a cough, rash, fever, or diarrhea).
    • Anyone who thinks they might be getting sick.
    • Anyone who could have recently been exposed to someone with an infectious illness.
  • All visitors must always clean their hands before entering your room.
  • Visitors and caregivers must use the visitor’s restroom in the hallway, not the restroom in your room. This is to minimize the spread of bacteria in your room.
  • Fresh-cut flowers and live plants aren’t allowed in your room. Please tell your family and friends not to bring or send them.

Exercise

Even though you’ll feel tired after your chemotherapy and CAR T cell infusion, you should still try to stay active and get out of bed every day. It’s important to be safe, so ask for help when you get up.

We encourage you to walk around the unit. You may need to wear a mask and gloves while you’re walking around. Your nurse will tell you if you also need to wear an isolation gown. Don’t leave the floor for walking or exercise.

A physical therapist will evaluate you early during your hospitalization and prescribe an exercise program that’s right for you.

Communication

Each room has a call bell system that’s monitored 24 hours and a day, 7 days a week. If you need something, use your call bell and say exactly what you need so we can send the right member of your healthcare team member to help you.

Diet

Your CAR T team will plan your diet. You’ll be given a menu and instructions on how to order your meals. Room service will deliver your meals to you.

If you keep kosher, have diabetes, or follow other special diets, tell your clinical dietitian nutritionist so we can prepare your meals properly. Your clinical dietitian nutritionist is also available to help you plan your meals.

Showering

You’ll be expected to shower daily. Your patient care technician will be in your room when you’re showering to help you and make sure you’re safe.

Mouth care

It’s important to take good care of your mouth. This will help to reduce infections and mouth sores. Your nurse will go over this with you. You can also read the resource Mouth Care During Your Cancer Treatment for more information.

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What to Expect in the Cellular Immunotherapy Unit

During an outpatient CAR T cell infusion, you’ll get most or all of your care in the Cellular Immunotherapy Unit. You’ll visit the unit every day and will only be admitted to the hospital if you need more care than can be given to you as an outpatient.

Arrive at the Cellular Immunotherapy Unit at your scheduled time. When you come to the unit, wear comfortable clothing that allows for easy access to your CVC, such as shirts that open at the front, sweatshirts, or large t-shirts. Don’t wear clothing that’s hard to take off or put back on.

  • After you check in and are taken to a room, your CAR T team will check your vital signs and weight and ask you about any symptoms you have. They’ll also examine you and check your blood counts, electrolyte levels, and kidney function.
  • After they examine you, you’ll wait in your room for your test results to be ready. This can take several hours. This is a good time for your caregiver to take a break, take some personal time, or run errands. You’ll be safe in the care of your treatment team. We highly recommend that your caregiver leave the hospital and take this time to relax. You’ll have an entertainment unit with a TV and computer to pass the time. Your meals will be provided for you.
  • Once they get the results from your blood tests (sometimes called “labs”), your CAR T team will make decisions about your care. The rest of your visit that day will depend on your test results. Based on your test results:
    • Your healthcare provider may give you fluids through your IV.
    • Your healthcare provider may give you an infusion of platelets, red blood cells, or other blood components.
    • Your healthcare provider may change some of your medications.
    • Your treatment could be left as is.

You’ll stay in the unit until all the treatments you need are completed, and then your caregiver will take you back to your nearby apartment or the 75th Street Residence. There, your caregiver will continue to monitor your temperature and how much you drink.

For more information about the Cellular Immunotherapy Unit, read the resource About Your Appointments in MSK’s Cellular Immunotherapy Unit.

What to bring

When you come to unit every day, bring the following:

  • A list of all prescription and nonprescription medications you’re taking, along with dosages and how often you take them. This should include patches, creams, vitamins, nutritional supplements, herbal products, and over-the-counter medications.
  • All the prescription medications you were told to take during your CAR T cell therapy.
  • Your Outpatient Cellular Therapy Temperature & Liquid Intake Log. Your caregiver will use this to keep track of your temperature and liquid intake while you’re away from the unit.
  • Books, newspapers, an audio player, a laptop, or tablet computer—whatever you need to pass the time.
  • A notebook to write down information and any questions you or your caregiver have.

What to do in your home or apartment

When you’re not in the Cellular Immunotherapy Unit, your caregiver will be responsible for caring for you.

Carry your Outpatient Cellular Therapy Emergency Card with you

If you’re having an outpatient CAR T cell infusion, you will get an Outpatient Cellular Therapy Emergency Card. Keep this card with you at all times. It has important information about who to call and where to go if you have a medical emergency.

If you need emergency medical care, show this card to the medical professional helping you.

Keep track of how much you drink

Drink 2 liters (64 ounces) of liquids every day. Try to drink small amounts throughout the day. Your caregiver must keep track of all the liquids you drink in the Outpatient Cellular Therapy Temperature & Liquid Intake Log.

Keep track of your temperature

From the time you start getting your chemotherapy, your caregiver must take your temperature every 4 hours while you’re awake. You’ll be given a thermometer.

‌  If your fever is 100.4 °F (38 °C) or higher, your caregiver needs to take you to Urgent Care Center as instructed in your Outpatient Cellular Therapy Emergency Guide. While you’re on your way there, call one of the numbers listed below.

  • If it’s between 8:00 am and 7:00 pm, call the Cellular Immunotherapy Unit at 646-608-3150.
  • If it’s after 7:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.

Watch for bleeding

If you have any bleeding, always tell someone from your CAR T team. If you notice that you’re bleeding and you’re not in the unit, take the following steps right away:

  1. Apply direct pressure on the bleeding site. If you’re bleeding from your nose, also apply ice over the bridge of your nose.
  2. After applying pressure, follow the Outpatient Cellular Therapy Emergency Guide.
    • If it’s between 8:00 am and 7:00 pm, call the Cellular Immunotherapy Unit at 646-608-3150.
    • If it’s after 7:00 pm, call 212-639-2000 and ask for the doctor covering bone marrow transplant.

Your care team will give you more instruction depending on the specific type of CAR T cell you get.

‌  Call your doctor right away if you have any of the following while you’re not in clinic:

  • Black bowel movements, blood in your bowel movements, or rectal bleeding
  • Blood in your urine
  • A headache that doesn’t get better, blurred vision, or dizziness
  • Coughing up blood, vomiting blood, or a nosebleed that doesn’t stop after a few minutes with applied pressure or ice

Move around and exercise

Even though you’ll feel tired after your chemotherapy and CAR T cell infusion, you should still try to stay active. A physical therapist will talk with you and prescribe an exercise program that’s right for you.

For more information about why it’s important to stay active and what your healthcare team can do to help, read the resource Staying Active During Stem Cell Transplant.

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Phases of CAR T Cell Therapy

There are 6 phases of CAR T cell therapy.The following table gives a summary of each phase. Keep reading for more information about each of the phases.

Phase Description
Phase 1: T cell collection

Some of your T cells are collected from your blood. The T cells are then sent to a lab to be genetically modified.

T cell collection is done about 4 to 6 weeks before your infusion. It takes about 2 to 4 hours.

Phase 2: T cell modification

While your T cells are being genetically modified into CAR T cells, you will have your pretreatment evaluation and pretreatment testing. You will also use this time to finish planning for your CAR T cell infusion and recovery.

You might also get other treatment during this time to lower your disease level before your CAR T cell treatment begins.

T cell modification takes about 3 to 4 weeks.

Phase 3: Lymphodepleting chemotherapy (also called conditioning)

Once your CAR T cells arrive at MSK, you will get chemotherapy to get your body ready for them.

Lymphodepleting chemotherapy is given about 3 days before your infusion. Your CAR T team will tell you how long it will take.

Phase 4: CAR T cell infusion

Your CAR T cells will be infused into your bloodstream. This might be done in the Cellular Immunotherapy Unit or in the hospital.

CAR T cell infusion takes about 5 to 30 minutes.

Phase 5: Early recovery

You will have appointments daily or every few days. Your CAR T team will see how you’re doing and manage your side effects. You will stay in the hospital or nearby.

Early recovery lasts for about 4 weeks after your infusion.

Phase 6: Long-term recovery

You will have appointments every few weeks or months. Your CAR T team will see how you’re doing and manage your side effects. You will come back to MSK for these appointments.

If you’re coming from another hospital, you may be seen by the doctor who referred (sent) you to MSK in between your visits to MSK.

Long-term recovery lasts for about 100 days or longer after your infusion.

Phase 1: T cell collection

Your T cells will be collected in MSK’s Blood Donor Room. Your collection will take about 2 to 4 hours.

Before your collection

Have a leukapheresis catheter placed, if needed

If a leukapheresis catheter will be used for your T cell collection, it will be placed 1 to 2 days before your collection. Your nurse will give you information about what to expect. You can also read the resource About Your Tunneled Catheter.

The catheter will be put into a large vein in your upper chest. It’s usually removed a few hours after your collection.

Eat high-calcium foods

For 1 to 2 days before your collection, eat dairy products and other foods that are high in calcium. You should also bring a high-calcium snack to eat during your collection. This can help keep the level of calcium in your blood from getting too low during your collection. Your nurse will give you a list of foods that are high in calcium.

During your collection

Your collection will be done while you’re on a bed or in a recliner chair. If you want to, you can watch TV or read during your procedure. A family member or friend may sit with you. You might feel cold during the procedure, so blankets will be available to make you comfortable.

During your T cell collection, some of your blood will be collected from your bloodstream through an IV line or leukapheresis catheter. The blood will flow through a machine that filters out the T cells and other white blood cells. The rest of your blood will be given back to you through another IV line.

During your collection, your donor room nurse will watch for side effects and give you medications if you need them. If you get numbness or tingling in your fingertips or around your mouth, tell your donor room nurse. These are signs that your calcium level is low. Your donor room nurse can give you calcium tablets to help with this.

After your collection

If you had an IV line in your arm(s), your donor room nurse will remove it and apply a bandage to prevent bleeding. They will tell you when you can remove the bandage. If you’re still bleeding when you remove the bandage, apply gentle but firm pressure on the site for 3 to 5 minutes. Call your doctor if the bleeding doesn’t stop.

If a leukapheresis catheter was used for your collection, your donor room nurse will schedule an appointment for it to be removed soon after your collection.

Most people can go back to doing their regular activities right after their collection.

Phase 2: T cell modification

After your T cells are collected, they will be sent to a lab. There, they will have a new gene added to them that allows them to recognize the cancer cells. This is called modification. T cells that have been modified are called CAR T cells.

While your T cells are being modified, you will complete your pretreatment evaluation and preadmission testing. You may also have chemotherapy to control your cancer.

This is also a good time to finish planning for your CAR T cell therapy. It’s especially important to make sure you’ve made plans for where you will stay and who your caregiver will be during your CAR T cell therapy. Read the sections “Getting Ready for Your CAR T Cell Therapy” and “Your Caregiver” for more information.

Your CAR T cells will be ready about 3 to 4 weeks after your collection.

Phase 3: lymphodepleting chemotherapy (conditioning)

Once your CAR T cells arrive at MSK, you’ll get chemotherapy to help get your body ready for the CAR T cell infusion. This is called lymphodepleting chemotherapy. Lymphodepletion is the process of lowering your white blood cell numbers with chemotherapy. It’s done to help get your body ready for the CAR T cells.

Most people get their lymphodepleting chemotherapy in the Cellular Immunotherapy Unit. It’s usually done a few days before the CAR T cell infusion. Your clinical nurse coordinator will give you your schedule and talk with you about what to expect. Your schedule depends on your specific medications and treatment.

Phase 4: CAR T cell infusion

If you’re having an inpatient CAR T cell infusion, you’ll be admitted to the hospital. This usually happens the day before your infusion. Your infusion will be given while you’re in your hospital room.

If you’re having an outpatient CAR T cell infusion, your infusion will be given at the Cellular Immunotherapy Unit.

Before your infusion

The day of your CAR T cell infusion, you’ll have a general check-up and neurologic tests. You’ll also be given medications to help keep you from having a reaction to the infusion. If you don’t have a CVC, a staff member will place an IV line in one of your veins.

Your CAR T team will tell you what time you should expect to get the infusion.

During your infusion

Your nurse or doctor will give you the CAR T cell infusion through your CVC or IV line. The infusion can take as little as 5 minutes or up to 30 minutes, depending on your treatment plan. A staff member will be in the room with you for at least the first 15 minutes of your infusion. They will probably stay with you for the entire infusion.

After your infusion

After the CAR T cell infusion, you’ll be monitored closely for side effects. Cytokine release syndrome (CRS) and neurological changes are common side effects of a CAR T cell infusion.

CRS is a group of symptoms that happen when T cells attack cancer cells. Common symptoms of CRS include:

  • A fever of 100.4 °F (38 °C) or higher
  • Flu-like symptoms, such as:
    • Muscle aches
    • Headaches
    • Chills
  • Feeling unusually tired
  • Nausea or vomiting
  • A faster heart rate than usual
  • Feeling dizzy or lightheaded

Common neurologic changes include:

  • Confusion
  • Trouble finding words
  • Tremors
  • Seizures
  • Sleeping more than usual
  • Feeling very drowsy and responding more slowly than usual

Not everyone gets the same type of CAR T cell therapy, and everyone responds differently to each type of therapy.

These side effects are not permanent. Your care team will watch you carefully for side effects. They will manage any side effects you have. It’s very important for you or your caregiver to tell a member of your healthcare team if you think you’re having any of these side effects.

Phase 5: early recovery

The first 4 weeks after your CAR T cell infusion are considered the early recovery phase.

If you had an inpatient CAR T cell infusion, you will stay in the hospital for 1 to 2 weeks or longer after your infusion. How long you stay in the hospital depends on how your body reacts to the cells. Your CAR T team will care for you and keep watching for side effects. Some side effects require closer monitoring and may result in transferring you to the Intensive Care Unit (ICU). Once you’re ready, you will be discharged from the hospital. You will stay in an apartment near the hospital or at MSK’s 75th Street Patient Residence.

If you had an outpatient CAR T cell infusion, you will have daily appointments for the first 2 weeks after your infusion. Your appointments will be at the Cellular Immunotherapy Unit. During your visits, your CAR T team will check on how you’re doing and help manage any side effects you’re having. You will be admitted to the hospital, if needed.

Starting about 2 weeks after your infusion, you may be able to have appointments less often. This depends on how you’re feeling. Side effects are still common during this time, so it’s important to come to all of your scheduled appointments.

About 4 weeks after your CAR T cell infusion, you’ll start having your appointments in your physician’s regular clinic instead of the Cellular Immunotherapy Unit.

Phase 6: long term recovery

Long term recovery is different for everyone. It depends on your specific situation and how the cancer reacts to your CAR T cell therapy. Your CAR T team will tell you what to expect.

You’ll have appointments with your CAR T team about 30 days, 100 days, and 1 year after your CAR T cell infusion. During these appointments, you will have tests to check how you’re doing. These tests might include:

  • A physical exam
  • Blood tests
  • Imaging scans (such as a PET scan or CT scan)
  • Bone marrow aspiration and biopsy

Your CAR T team will use the results of these tests to plan your care during your recovery.

Your CAR T team will talk with you about going back to seeing your primary doctor during your long term follow-up. If you do start seeing your primary doctor, please be sure to update your CAR T team on how you’re doing.

Some people need to come back to the CAR T team for more care. This may include being seen in the outpatient clinic or being admitted to the hospital.

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Educational Resources

This section contains the educational resources we referred to throughout this guide. You can find them online, or you can ask a member of your CAR T team. You can also search for more educational materials on the Patient and Caregiver Education website.

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