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 isn’t 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. 

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 that doesn’t mean you’ll have all of them. Try 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 in an apartment near the hospital that’s approved by your doctor or in a furnished apartment at MSK’s 75th Street Patient Residence. You’ll visit the outpatient Cellular Immunotherapy Unit every day before, during, and for some time right after your infusion.

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 both physically and emotionally. If anything is bothering you, even if it seems small, tell a member of your CAR T team. Don’t 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.

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

Over the phone

Between 9 a.m. and 5 p.m., call your doctor’s office. After 5 p.m., call 212-639-2000. Ask for the doctor covering bone marrow transplant.

If you’re having an outpatient CAR T cell infusion, between 9 a.m. and 7 p.m., call the Cellular Immunotherapy Unit at 646-608-3150. After 7 p.m., call 212-639-2000. Ask for the doctor covering bone marrow transplant.

In person

If you’re in the hospital, talk with any member of your inpatient care 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.

If you’re in the hospital, 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.

Through 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.

How to enroll

Instructions for enrolling in MyMSK are printed on the bottom of your appointment print out. You can also read Communicating With Your Care Team: When to Call or Use MyMSK.

About PROMIS

Your CAR T team will also use MyMSK to check in about how you’re feeling physically and mentally over time. The set of questions they’ll send is called PROMIS. Your CAR T team will send PROMIS questions to your MyMSK account:

• On or near the day you start CAR T treatment.
• On the day of your CAR T cell infusion.
• Every 7 days for the first month after your CAR T cell infusion.
• Every month for the first year after your CAR T cell infusion.
• Every 3 months for the second year after your CAR T cell infusion.

If you report any concerning symptoms when you’re filling out the PROMIS questions, you’ll either see a message asking you to call your healthcare team or a member of your CAR T team will call you to help. Your answers will also help us know how people generally feel after CAR T cell therapy so we can improve our care for the future.

How to use this guide

There’s a lot of information in this guide. Read the whole guide at least once, including the additional resources included at the back. You may find it easier to read a few sections at a time rather than trying to read the whole guide in one sitting. 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. Please ask about anything that’s on your mind.

Medical terms

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

Antigen and T cell basics

About antigens

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.

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 isn’t 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.”

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 they aren’t, 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, anything that isn’t clear, and any other questions you have.
• Choose a caregiver. Identify a family member or friend who can act as your caregiver. Make sure they understand 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 or read .
• 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. 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 guidelines. If you want to meet with a clinical dietitian nutritionist, ask your nurse for a referral.
• Meet with a pharmacist. They’ll 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’ll 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 talking with your social worker about your concerns and making 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 Zoom, Google Hangouts, WhatsApp, 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.
• Keep copies of your children’s favorite stories with you in your room. At night, you can use video chats to read along with them before they go to sleep.
• 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 email them to your children. They can read along with these stories while listening to your voice.
• 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 hard. Your caregiver can bring their work to you. You can talk with your children about them by video chat or on the phone.

We know 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. One specific doctor will be your primary outpatient doctor, but 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. Nurse practitioners (NPs), physician assistants (PAs), and certified registered nurse anesthetists (CRNAs) are all APPs.
• A clinical nurse coordinator is a nurse who will communicate and work with you, your caregiver, and your doctors to organize and schedule the testing, procedures, and consultations you’ll need before your infusion. They’ll also teach you about your specific treatment plan.
• Nurses will work with you during your outpatient visits and while you’re in the hospital. They’re registered nurses (RNs) who are trained to care for people having stem cell transplants and CAR T cell therapy. Each outpatient nurse works with 1 or more attending doctors. You’ll meet your outpatient nurse during your initial consultation visit. They’ll 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 who will care for you. The nurses work 12-hour shifts and try to maintain consistency with who will be working with you. Your nurses work closely with other members of your healthcare team to manage any symptoms you have. They can help you with any questions or concerns you have.
• A nursing assistant or patient care technician (PCT) 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 caring for 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 people having treatment may face. They’re available to listen, offer counseling, and refer you or your loved ones to other resources and services.
• A CAR T cell service coordinator will work with you and your insurance company to figure out what your treatment benefits are. They’re familiar with the insurance issues people having CAR T cell therapy may face. 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 attending doctors and outpatient nurses. You might speak with them when you submit information, are scheduling an appointment, or have questions for your CAR T team.
• A care coordinator works in an outpatient area and keeps track of the flow of patients in and out of the clinic. They make sure all the tests, scans, and treatments your medical team orders are either completed or scheduled. Care coordinators also manage your medical records and coordinate your future appointments.
• A clinical research coordinator works with your healthcare team. They’ll 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.
• 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 the hours room service is available and how to use it. They’ll also 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 benefits from having support from a caregiver before, during, and after their infusion. Caregivers are usually a family member or 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

You must have a clear caregiver plan to have an outpatient CAR T cell infusion. There are no exceptions. Your CAR T team will talk with you about this.

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 they do.

Your caregiver must be available 24 hours a day, 7 days a week during your treatment. Your CAR T team will give them specific instructions about what they need to do. Some of these responsibilities will include the following tasks.

Medical support

• Gathering information from your CAR T team.
• Making sure you take your medications.
• Keeping a written record of when you take your medications.
• Measuring 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 changes in your condition or new symptoms you have.
• Calling for medical help in an emergency.

Practical support

• Taking you to and from your daily appointments.
• 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.
• 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.

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. In general, we recommend that you have a full-time, 24-hour a day, 7-day a week caregiver for the first 2 weeks after discharge. The exact length of time you’ll need 24/7 caregiver support may vary.

Your CAR T team will give your caregiver specific instructions about what they need to do. Some of these responsibilities will include the following tasks.

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 when preparing your meals.
• 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.
• 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 stay positive, calm, and flexible while providing you with the support and encouragement you need. It’s also 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. It’s best to limit the number of caregivers to 1 or 2 people.

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. 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 makes 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 so you don’t have a reaction.
• Positron emission tomography (PET) scan. This is a radiology test that’s used to look at certain types of cancer. It’s also used to look at 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 it 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. It’s usually taken from the back of your hip. To take the sample, 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.

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

Your preadmission appointment

Once your pretreatment evaluation is finished and you know 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. During this appointment:

• Your doctor will review your treatment plan with you and go over the consent forms. You’ll sign consent for your CAR T cell therapy, if you haven’t already.
• Your clinical nurse coordinator will give you a calendar outlining your treatment plan, review the information with you, 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, read About Your Blood Transfusion.

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, draw 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:

• A tunneled chest catheter is put into a large vein in your upper chest. Tunneled chest catheters are sometimes called Hickman catheters. For more information, read About Your Tunneled Catheter.
• A peripherally inserted central catheter (PICC) is put into a large vein in your arm. For more information, read About Your Peripherally Inserted Central Catheter (PICC).

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.

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 a.m. or 7:00 p.m. 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 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 Call! Don't Fall!.

Testing and evaluations

• A member of your healthcare team will weigh you and take a sample of your blood before 6:00 a.m. every day. 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, watch 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’ll 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, but the following people shouldn’t visit:
  • 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, dried, and live flowers and 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 when you’re walking or exercising.

A physical therapist will meet with 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 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 for ordering 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. A 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 reduce infections and mouth sores. Your nurse will go over this with you. You can also read Mouth Care During Your Cancer Treatment for more information.

What to expect in the Cellular Immunotherapy Unit

During an outpatient CAR T cell infusion, you’ll get most or all 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.

When you come to the Cellular Immunotherapy Unit, arrive at your scheduled time. Wear comfortable clothing that allows for easy access to your CVC, such as a shirt that opens at the front, a sweatshirt, or a large t-shirt. 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. You’ll have an entertainment unit with a TV and computer to pass the time. Your meals will be provided for you.
  • This is a good time for your caregiver to take a break, take some personal time, or run errands. You’ll be safe in your treatment team’s care. We highly recommend that your caregiver leaves the hospital and takes this time to relax.
• 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 CVC.
  • 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. After that, your caregiver will take you to your nearby apartment or the 75^th Street Residence. There, they’ll continue to monitor your temperature and how much you drink.

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

What to bring to the Cellular Immunotherapy Unit

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.
• Things to pass the time, such as books, newspapers, an audio player, a laptop, or tablet computer. Don’t forget the charger for any electronic device(s) you bring.
• 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.

Have the following resources easily accessible when you’re not in the Cellular Immunotherapy Unit. A member of your CAR T team will give you a copy.

• Outpatient Cellular Therapy Temperature & Liquid Intake Log
• Outpatient Cellular Therapy Emergency Guide (Color)

Carry your Outpatient Cellular Therapy Emergency Card with you

If you’re having an outpatient CAR T cell infusion, you’ll get an Outpatient Cellular Therapy Emergency Card (Wallet Card - Color). 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.

Watch for bleeding

Always tell someone from your CAR T team if you have any bleeding. If you notice you’re bleeding and you aren’t in the Cellular Immunotherapy unit, take the following steps right away:

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

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 Staying Active During Stem Cell Transplant.

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 1: T cell collection

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

Before your T cell collection

Have a leukapheresis catheter placed, if needed

If a leukapheresis catheter will be used for your T cell collection, it’ll be placed 1 to 2 days before your collection. Your nurse will give you information about what to expect. You can also read About Your Tunneled Catheter.

The leukapheresis 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 T cell 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. You might feel cold during the procedure, so blankets will be available to make you comfortable.

During your 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.

Your donor room nurse will watch for side effects and give you medications if you need them. If you feel 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 T cell 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’ll 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 T cell collection.

Phase 2: T cell modification

After your T cells are collected, they’ll be sent to a lab. There, they’ll 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’ll 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’ll 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 CAR T cell infusion

The day of your CAR T cell infusion, you’ll have a general check-up and neurologic tests. You’ll also get 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 can expect to get the infusion.

During your CAR T cell 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’ll probably stay with you for the entire infusion.

After your CAR T cell infusion

After the CAR T cell infusion, you’ll be watched 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 aren’t permanent. Your care team will watch you carefully for side effects. They’ll 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’ll 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 need to be watched more closely and may result in transferring you to the Intensive Care Unit (ICU). Once you’re ready, you’ll be discharged from the hospital. You’ll stay in an apartment near the hospital or at MSK’s 75^th Street Patient Residence.

If you had an outpatient CAR T cell infusion, you’ll 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 how you’re doing and help manage any side effects you’re having. You’ll 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 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’ll 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.

Educational resources

This section contains the educational resources we referred to throughout this guide, as well as some additional educational resources you may find helpful. You can also search for more educational materials on the Patient and Community Education website, www.msk.org/pe.

• About Your Appointments in MSK’s Cellular Immunotherapy Unit
• About Your Blood Transfusion
• About Your Peripherally Inserted Central Catheter (PICC)
• About Your Tunneled Catheter
• Building Your Family After Cancer Treatment: For People Born With Testicles
• Building Your Family After Cancer Treatment: For People Born With Ovaries and a Uterus
• Call! Don't Fall!
• Communicating With Your Care Team: When to Call or Use MyMSK
• Fertility Preservation Before Cancer Treatment: Options for People Born with Ovaries and a Uterus
• Food Safety During Cancer Treatment
• Hand Hygiene and Preventing Infection
• Improving Your Vulvovaginal Health
• Mouth Care During Your Cancer Treatment
• Outpatient Cellular Therapy Emergency Guide (Color)
• Outpatient Cellular Therapy Temperature & Liquid Intake Log
• Sex and Your Cancer Treatment
• Sexual Health and Intimacy
• Sperm Banking
• Staying Active During Stem Cell Transplant