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

This guide explains chimeric antigen receptor T cell (CAR T cell) therapy. It will help you and your loved ones understand what to expect before, during, and after your CAR T cell therapy.

This guide should not replace talking with your CAR T team. They’ll teach you about your treatment and what to expect. You can use this guide to help you remember.

We’ll explain some of the challenges you may have during your CAR T cell therapy and recovery. You may not face all of them. Try not to compare yourself to other people who had CAR T cell therapy. Everyone is different.

Communicating with your care team

It’s normal to have many kinds of emotions during CAR T cell therapy. It’s very important to talk with your CAR T team and your caregiver about how you’re feeling physically and emotionally.

Your CAR T team includes social workers, chaplains (spiritual counselors), psychiatrists, doctors, nurses, and members of MSK’s Integrative Medicine and Wellness Service. All these healthcare providers are here to support and help you and your caregivers cope with your feelings.

Tell a member of your CAR T team if anything is bothering you, even if it seems small. Don’t wait and let things build up. The more information you share with your CAR T team, the more they can help you.

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

Communicating by phone

Communicating in person

Talk with any member of your care team. If you’re in the hospital (inpatient), it’s important to talk with your inpatient team, not the outpatient office. Your inpatient team is the team of healthcare providers who come to see you in your hospital room.

You should also choose just 1 caregiver to call the nursing station for updates. This person can share the updates with the rest of your friends and family. Your inpatient team will give you the nursing station phone number if you’re admitted to the hospital.

Communicating through MSK MyChart

MSK MyChart (mskmychart.mskcc.org) is MSK’s patient portal. Instructions for enrolling in MSK MyChart are printed on the bottom of your appointment printout.

You can use MSK MyChart to check your appointment schedule, ask for a prescription refill, contact a healthcare provider, and find educational information. We suggest reading Communicating With Your Care Team: When to Call or Use MSK MyChart to learn more.

About PROMIS

Your CAR T team will use MSK MyChart to check in about how you’re feeling physically and mentally over time. They will send you a set of questions, called PROMIS. Your CAR T team will send PROMIS questions to your MSK MyChart 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.

There may be times you report concerning symptoms when you’re filling out the PROMIS questions. If so, you’ll either see a message asking you to call your care team, or they will call you to help.

Your answers also will help us know in general how people feel after CAR T cell therapy. This information helps us improve our care in the future.

About CAR T cell therapy

CAR T cell therapy is a type of immunotherapy. Immunotherapy is a form of cancer treatment. It boosts your immune system’s natural ability to fight cancer. Your immune system attacks cancer cells, much the same way it attacks bacteria or viruses (germs).

What are CAR T cells?

T cells are a type of white blood cell that help your immune system fight infection and diseases. They recognize and attack viruses or abnormal cells in your body.

CAR T cells are T cells that we take from your blood and send to a lab where they’re changed so they recognize and kill cancer cells.

What will happen during CAR T cell therapy?

CAR T cell therapy is broken into 6 main steps, or phases.

Phase 1: Tests for insurance approval

You’ll have a few medical tests done to make sure CAR T cell therapy is right for you. Your insurance company may also need some tests results before it approves your treatment. Your care team will talk with you about which tests you need.

Phase 2: T cell collection

Your T cells will be collected in MSK’s Blood Donor Room. The collection will take about 2 to 4 hours. Plan for your appointment to last 4 to 6 hours in total.

Read the section “T cell collection” to learn more.

Phase 3: T cell modification and bridging treatments

After we collect your T cells, we will send them to a lab to be changed into chimeric antigen receptor (CAR) T cells. This will help them recognize and kill cancer cells. This is called T cell modification. It takes 2.5 to 6 weeks, depending on which CAR T you get

You may also get chemotherapy (chemo) or other treatment during this time to help control your cancer before your CAR T cell infusion. This is called bridging treatment.

This is also a good time to finish planning for your CAR T cell therapy. You also must choose your caregiver.

Read the sections “Getting ready for your CAR T cell therapy” and “Your caregiver” to learn more.

Phase 4: Lymphodepleting chemotherapy and CAR T cell infusion

Once your CAR T cells are ready, the lab will send them back to MSK. You’ll complete your pretreatment evaluation and pretreatment visit. You’ll also get chemo to help get your body ready for your CAR T cell infusion. This is called lymphodepleting (lim-foh-dee-PLEE-ting) chemo. It’s different than chemo you may get as a bridging treatment.

Lymphodepletion (LIM-foh dih-PLEE-shun) is the process of lowering your white blood cell numbers with chemo. Having fewer white blood cells will help the CAR T cells work better at finding and killing cancer. It also gives them room to grow.

Most people get lymphodepleting chemo in the Outpatient Cellular Infusion Unit. To learn more about what to expect during appointments in the unit, read the “While you’re in the Outpatient Cellular Infusion Unit” section. You can also read About Your Appointments in MSK’s Cellular Infusion Unit.

Lymphodepleting chemo is most often done about 5 days before your CAR T cell infusion. Your clinical nurse coordinator will give you a schedule. They’ll talk with you about what to expect. Your schedule depends on which CAR T you get.

Your appointments usually last between 3 and 5 hours.

CAR T cell infusion

Your CAR T cells will be infused into your bloodstream through your CVC or an IV. You can have visitors during the infusion in compliance with MSK’s Visitor Policy.

• If you’re having an inpatient CAR T cell infusion: You’ll be admitted to the hospital. This most often happens the day before your infusion. Your infusion will take place in your hospital room.
• If you’re having an outpatient CAR T cell infusion: Your infusion will take place at the Cellular Infusion Unit.

Read the section “What to expect during your CAR T infusion” to learn more.

Phase 5: Early recovery

Early recovery lasts about 4 weeks after your infusion. During this time, your CAR T team will see how you’re doing and manage your side effects.

• If you had an inpatient CAR T cell infusion: You’ll stay in the hospital for 7 to 10 days or longer after your infusion. After that, you’ll need to stay nearby for outpatient follow-up a few times a week.
• If you had an outpatient CAR T cell infusion: You’ll have appointments every day for the first 7 to 10 days after your infusion.

Regular follow-up visits

After your hospital stay or daily appointments, you’ll keep seeing your CAR T team for about 28 days after your infusion. Plan to stay near the hospital during this time. Your caregiver should be with you 24/7 during this time.

The number of follow-up visits depends on how you’re recovering, but they often look like this:

• First week of follow-up: About 3 times a week.
• Second week of follow-up: About 2 times a week.
• Final week: Once or twice a week.

Your CAR T team will adjust your schedule based on your needs.

Read the section “What to expect after your CAR T cell infusion” to learn more.

Phase 6: Long-term recovery

Long-term recovery lasts for about 90 days or longer after your infusion.

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

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

Read the “What to expect after your CAR T cell infusion” to learn more.

Your CAR T team

A large care team will work together to care for you during each phase of your CAR T cell therapy. You’ll meet many of the healthcare providers on your care team as you go through your CAR T cell therapy. You may not meet others. But everyone on your care team is working to help you.

Here’s a list of your CAR T cell therapy team members and their roles.

• A cellular therapy doctor will be in charge of your care throughout your treatment. You will have one primary (main) outpatient doctor. Different doctors may care for you while you’re in the hospital, but they will be in contact with your primary cellular therapy doctor as needed.
• 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 care for you. They can give medical treatments and prescribe medicine. Sometimes, you may see them instead of your doctor. APPs include nurse practitioners (NPs) and physician assistants (PAs). An APP will see you at each of your visits to the Outpatient Cellular Therapy Unit.
• A clinical nurse coordinator (CNC) is a nurse who works with you, your caregiver, and your team of doctors. They will organize and schedule testing, procedures, and consultations with other professionals you need before your infusion. Your clinical nurse coordinator will teach you about your treatment plan.
• Nurses will work with you during your outpatient visits and while you’re in the hospital. They’re registered nurses (RNs) with special training in caring for people getting cellular therapy treatments. 
• Both the inpatient and outpatient nurses work closely with your care team to manage your symptoms. They can help you with any questions or concerns.
• A nursing assistant (NA), patient care technician (PCT), or medical assistant (MA) works with your nursing team. They will help give you basic care and support, such as helping you shower.
• 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 is a pharmacist who works directly with you, your caregiver, and other members of your care team. They will review your medicines with you and your caregiver and teach you how to take them properly. They’ll also tell you about side effects the medicines can cause. Your clinical pharmacists will have special training in caring for people getting cellular therapy.
• A social worker helps you, your family, and friends manage the stress of going through CAR T cell therapy. Social workers understand the issues people having treatment face. They’re here to listen, offer counseling, and refer you or your loved ones to other resources and services. They also play an important role in making sure you’re set up for a safe recovery. This includes helping you arrange housing close to the treatment center (if you don’t live nearby) and confirming you have a caregiver plan in place — meaning someone who can be with you 24/7.
• A patient financial service (PFS) nurse case manager works with you and your health insurer to learn about your treatment benefits. They know the insurance challenges people may face during CAR T cell therapy. Each health plan has its own policies and rules. When your insurer needs authorization, your PFS nurse case manager will help.
• An office coordinator gives administrative support to your attending doctors and the nurses who work with them. You may talk with them to give us information, schedule an appointment, or if you have questions for your CAR T team.
• A medical coordinator (MC) works in an outpatient area. They track the flow of people in and out of the clinic. They make sure you schedule and complete all the tests, scans, and treatments your care team orders. Medical coordinators also manage your health records and coordinate your future appointments.
• A clinical research coordinator works with your care team. They’ll explain some of the research studies, also called clinical trials, you may be able to join. These studies mostly involve collecting samples or data.
• A patient representative is the connection between you, your family, and MSK’s 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. They can help you communicate with your CAR T team.
• A physical therapist (PT), occupational therapist (OT), or both may 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 explains how room service works, including when it’s available and how to use it. They’ll make sure you get the right menus and deliver your meals.
• A case manager may see you while you’re in the hospital. They’ll help you arrange home care, as needed.

Caregiver requirement for CAR T cell therapy

You must have a clear caregiver plan to get CAR T cell therapy. This is required whether you get treatment in the hospital or at the Outpatient Cellular Therapy Unit. There are no exceptions.

CAR T cell therapy can cause side effects. These side effects can happen quickly, at any time – day or night. That’s why you need another adult with you at all times. They will watch for symptoms and call your care team right away if something seems wrong.

Caregivers must stay with you 24 hours a day, 7 days a week until your CAR T team tells you it’s no longer needed. You will need a caregiver plan for up to 28 days.

Choosing a caregiver

Choosing your caregiver is an important step in getting ready for your CAR T cell therapy. They will support you before, during, and after your infusion. Caregivers are usually a family member or close friend. Choose someone who is reliable and comfortable reporting symptoms right away. Your caregiver does not need medical training.

If you do not have 1 person to be your caregiver, it’s OK to have more than 1 person share the role. It’s best to limit the number of caregivers to 1 or 2 people. There must always be someone available. Plan ahead so there are no gaps in coverage. 

Talk with your social worker if you want to hire a home health aide. They will give you information about these services.

What a caregiver does

Your caregiver will be responsible for some of the medical, practical, and emotional support you will need.

Medical support

• Look out for symptoms. Tell your outpatient cellular therapy team about any symptoms.
• Read Outpatient Cellular Therapy Emergency Guide to learn what to do in case of any emergency. Your care team will give you a copy.
• Call your outpatient cellular therapy team with any concerns, and make sure you get to urgent care if needed.
  • Call for medical help right away in an emergency.
• Take your temperature every 4 hours while you’re awake and away from the Cellular Infusion Unit.
• Make sure you take your medicine.
• Know how to take care of your central venous catheter (CVC).

Practical support

• Take you to and from your appointments.
• Keep you away from anyone who’s sick and help manage visitors.
• Handle food safely to prevent foodborne illness (food poisoning).
• Keep the place you’re staying clean.
• Keep family members and friends up to date about your health.

Emotional support

• Pay attention to your moods and feelings.
• Communicate with you and listen to you.
• Understand your needs and your decisions.
• Feel comfortable contacting your care team if they’re worried about your emotional state.

The caregiver role for an outpatient CAR T cell infusion is full time, 24 hours a day, 7 days a week. It’s tiring, demanding, and stressful. That’s even more true if your condition, schedule, or treatment changes.

Your CAR T team will do everything they can to support your caregiver. They can also refer your caregiver to other support services to help them manage their role.

Getting ready for your CAR T cell therapy

Initial consult

Your initial (first) consult is your first appointment with your cellular therapy doctor. During this appointment, you’ll meet with your cellular therapy doctor and other members of your CAR T team. Your doctor will:

• Talk with you about your health and surgery history.
• Do a physical exam and other medical tests.
• Talk with you about what is the best treatment plan for you.
• Explain what to expect during your CAR T cell therapy and answer your questions.
• Ask you to sign a consent form for CAR T cell therapy. A consent form is a form that says you agree to the treatment and understand the risks.

Meet with a social worker

Your social worker will tell you about MSK’s psychological, emotional, and financial support services and assess if you need any psychosocial support. They will help you find a place near MSK to stay during your treatment and follow up, if needed. They’ll also talk with you about why you need a caregiver and help you finalize your caregiver plan. You can contact your social worker at any point during your care for support.

T cell collection

Your T cells will be collected in MSK’s Blood Donor Room. You can expect the entire appointment to take 4 to 6 hours. Read About Your T Cell Collection to learn more.

Before your T cell collection

Have a leukapheresis catheter placed, if needed

You’ll have an appointment in the Blood Donor Room called a “vein check.” We will check if your veins are big enough to collect your T cells from a vein in your arm. If not, you’ll get a type of intravenous (IV) catheter called a leukapheresis (LOO-kuh-feh-REE-sis) catheter.

If you need a leukapheresis catheter, it is usually placed the day before your collection. A surgeon will put it into a large vein in your upper chest. Your nurse will tell you what to expect. You will need someone to go home with you because you may feel drowsy after your procedure. Read About Your Tunneled Catheter to learn more.

Eat foods with calcium

During your collection, your blood will go through tubing in a machine. The tubing has a special liquid that keeps your blood from clotting. This liquid can lower the calcium in your blood.

To help prevent low calcium, eat foods high in calcium for 3 days before your appointment. You should also bring a high-calcium snack to eat during your collection.

Foods high in calcium include:

• Milk
• Yogurt
• Cheese
• Canned fish with bones, like sardines or salmon
• Leafy green vegetables, such as kale, collard greens, and bok choy
• Some nuts and seeds

Eating these foods can help keep your calcium level normal during your collection.

During your T cell collection

Your collection will be done while you’re on a bed or in a recliner chair. You can watch TV or read during your procedure. You may feel cold during the procedure since your blood loses heat while moving through the machine. We will give you blankets to make you comfortable. It’s a good idea to bring layers of clothing to be more comfortable.

Some of your blood will be collected through an IV line or leukapheresis catheter. The blood will flow through a machine that collects the T 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. They will give you medicine as needed. If you feel numbness or tingling in your fingertips or around your mouth, tell your donor room nurse. These are signs your calcium level is low. Your donor room nurse can give you calcium tablets or calcium through your IV to help.

After your T cell collection

If you had an IV line in your arm: Your donor room nurse will take it out. They’ll apply a bandage to prevent bleeding. They’ll tell you when you can take the bandage off.

If you’re still bleeding after you take the bandage off, put gentle, firm pressure on the site for 3 to 5 minutes. Call your doctor if the bleeding does not stop.

If you had a leukapheresis catheter: After your T cell collection, you’ll go to the Interventional Radiology department to get your catheter removed.

Most people go back to doing their regular activities the same day of their T cell collection.

Pretreatment evaluation

We’ll check your overall physical condition again before your CAR T infusion. 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 a few trips to MSK to have tests. We often call this the work-up or restaging period.

You must have some, but not always all, of these tests during the work up. Even if you have some of them before your T cell collection, you may need them again during your pretreatment evaluation.

• Blood tests (sometimes called labs). These are done to check a few things. This includes how well your kidneys and liver work, your blood counts, and if you’ve been exposed to certain viruses.
• Electrocardiogram (EKG) and echocardiogram (echo). These are done to give your CAR T team information about your heart.
• Positron emission tomography (PET) scan. This is an imaging test that’s used to look at some types of cancer. It’s also used to look at your organs and how they work in your body.
• 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. The healthcare provider performing the procedure will numb your hip and place a needle into your bone marrow (the soft tissue inside your bones). They’ll take out a small amount of bone marrow. The healthcare provider may do a bone marrow biopsy at the same time. This procedure collects a tiny piece of bone marrow to examine. This is done to check how well your bone marrow is making cells. They will also look for any sign of cancer in the marrow.

Your CAR T team will work with you and your caregiver to schedule the tests. Your care team will use the results of the tests to plan your treatment. They’ll make sure it’s safe to start.

Your care team will explain any other tests you may need.

Pretreatment appointment

You’ll have your pretreatment appointment once your CAR T cells are ready and your CAR T cell infusion is scheduled. Sometimes, the pretreatment appointment is the same day as the pretreatment evaluation.

This pretreatment appointment is usually about 1 to 2 weeks before your scheduled CAR T cell infusion. You must come to this appointment in person. It cannot be a video visit.

During your pretreatment appointment:

• Your cellular therapy doctor will go over your treatment plan and consent forms with you. You’ll sign consent for your CAR T cell infusion and lymphodepleting chemo, if you have not already.
• Your clinical nurse coordinator will give you a calendar with your treatment plan. They’ll review the information with you and answer your questions.
• We will ask you to sign a consent form for a blood transfusion. You may need blood or platelet transfusions when your blood counts are low after your treatment. Read About Your Blood Transfusion to learn more.

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 smaller tubes called lumens.

A CVC lets your CAR T team infuse your cells and draw your blood. It also helps them give you fluids, electrolytes, blood transfusions, chemo, and other medicine. They will not need to stick you with a needle as often. Having a CVC will make your treatment much more comfortable.

There are 2 main types of CVCs:

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

Your doctor or nurse will tell you which type of CVC you’ll have.

CVCs are often taken out 2 to 3 weeks after your CAR T cell therapy when you don’t need it anymore. If you have a port, it may come out sooner.

Other things to do before your CAR T cell infusion

After your T cell collection, you’ll start getting ready for your CAR T cell infusion. Here’s a list of things to do to get ready.

Fill out a Health Care Proxy form. This form is a legal document. It says who will speak for you if you cannot communicate for yourself. This person is called your health care agent. They can be different than your caregiver.

• Read Advance Care Planning for People With Cancer and Their Loved Ones to learn more about health care proxies and other advance directives.
• Read How To Be a Health Care Agent to learn more about being a health care agent.
• Talk with a member of your care team or a social worker if you have questions about filling out a Health Care Proxy form.

Arrange for disability or a leave of absence from work. If you’re working, plan to go on disability or take a leave of absence. The exact length of time is different for everyone. Your care team will talk with you about how long you will need to be away from work. They will also help you complete any forms you need to be away from work.

Arrange for childcare and pet care, if needed. Your social worker can help guide you if you’re worried about talking with your children about your CAR T cell therapy.

It’s also important to make sure you have a clear caregiver plan for your CAR T cell therapy. Read “Caregiver requirements for CAR T cell therapy” to learn more.

What to expect during your CAR T cell infusion

This section has information about what to expect during your CAR T cell infusion.

If you’re having an inpatient CAR T cell infusion: You’ll be admitted to the hospital, usually the day before your infusion. Your infusion will take place in your hospital room. Your CAR T team will tell you what time you can expect to get the infusion.

If you’re having an outpatient CAR T cell infusion: Your infusion will take place at the Cellular Infusion Unit.

Before your CAR T cell infusion

The day of your CAR T cell infusion, you’ll have a general check-up. Your nurse will ask you simple questions to check your neurological (brain) function. You’ll also get medicine to help keep you from having a reaction to the infusion.

During your CAR T cell infusion

Your healthcare provider will give you your CAR T cells through your CVC or IV line. The infusion can take 5 to 30 minutes, depending on which CAR T you receive. 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

We will watch you closely for side effects for a few hours after your infusion.

Most people do not have a side effect on the day of their infusion. If you do have a side effect, it’s most likely to be an allergic reaction to the infusion.

About cytokine release syndrome (CRS) and neurological side effects

Cytokine release syndrome (CRS) and neurological changes are the most common side effects of CAR T cell therapy. These side effects can come up hours to days after your infusion. Your care team will be checking for these side effects throughout your care.

CRS is a group of symptoms that happen when T cells attack cancer cells and overwhelm the immune system. Read About Cytokine Release Syndrome (CRS) and Neurotoxicity Syndrome to learn more.

Here are some of the side effects we look for:

These side effects will go away. Your care team will watch you carefully and manage any side effects. It’s very important that you and your caregiver tell your care team if you have any new symptoms.

What to expect in the hospital

This section has information about what to expect if you’re admitted to the hospital during any part of your treatment. Please read this section no matter if you’re having an inpatient or outpatient CAR T cell infusion. Even if your infusion is planned as outpatient, you may still be admitted to the hospital for monitoring or to manage side effects. Reading this section now will help you know what to expect.

There are a few units in the hospital that care for cellular therapy patients. The nurses on each unit have special training in caring for people having CAR T cell therapy. All the units follow the same guidelines.

Throughout your hospital stay

Your inpatient care team will care for you and watch for side effects throughout your hospital stay. Some side effects need to be watched more closely and may mean you need to move to the Intensive Care Unit (ICU).

Your nurses, patient care technicians, and nursing assistants most often work for 12-hour shifts. The shifts start at 7 a.m. or 7 p.m. When nursing shifts change, your nurse will update the nurse taking over. They’ll tell them anything they should know about you and your care during that shift.

The hospital environment

• Keep your hands clean. Read Hand Hygiene and Preventing Infection to learn more.
• Your CVC and IV lines will be connected to an electronic pump on an IV pole during most of your hospital stay. Your nurse will not disconnect your lines when you take a shower or walk around. Disconnecting them can raise your risk for a CVC infection. It’s important to keep your lines connected during your stay.
• If you’re at risk for falling, someone will help you get to the bathroom. Your care team will tell you more about how to keep from falling while you’re in the hospital. Read Call! Don't Fall! to learn more.

Your hospital room

• 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. Tell us what you need so we can send the right member of your care team member to help.
• Your room will have Wi-Fi and a TV with cable channels. You can also bring a streaming device to use on your TV. Amazon Fire TV Stick, Roku Streaming Stick, Google TV Streamer, and Apple TV are examples.
• People getting CAR T cell therapy stay in a semi-private (shared) hospital room. Room assignments are based on:
  • Which rooms are available
  • What you and other patients need to avoid infections
  • What you and other patients need to be safe.
• You may need to change your room or floor while you’re in the hospital. This will be based on your medical needs, other patients’ medical needs, and which hospital rooms are available. We try to avoid changing rooms as much as possible.

Testing and evaluations

Your medical team will see you every day. This includes a doctor and an NP or PA. A clinical pharmacist may also see you.

You will also have these tests and evaluations regularly:

• Your care team will check your vital signs every 4 hours, even at night. This includes your temperature, blood pressure, heart rate, breathing, and pain level.
• Your care team will give you medicine during your stay. Please do not bring any of your own medicine to the hospital.
• A member of your care team will weigh you and take a sample of your blood before 6 a.m. each day. The blood test will check to see how your white blood cells, red blood cells, and platelets are recovering.
• We will do other blood tests as needed. These tests check how well your kidneys and liver work and check for infections. We will also check your blood for signs that your body may be having side effects from the CAR T treatment, so we can find and treat any problems early. This information helps your care team assess your overall condition.
• Your care team will measure your urine (pee) throughout the day. It’s important that we know how much urine you’re making. They will also ask you how much water or liquids you’re drinking.
• Your nurse may ask you simple questions to check your neurological (brain) function.

Visitors

Go to www.msk.org/visit to see MSK’s most current visitor policy. If you have any questions, talk with the inpatient unit charge nurse or nurse leader.

Along with the instructions in the visitor policy, your visitors must follow the instructions below. This is to keep you and others getting CAR T cell therapy safe.

• You must not have any visitors who:
  • Have symptoms of being sick, such as a cough, rash, fever, or diarrhea.
  • Think they may be getting sick.
  • May have recently been exposed to someone with an infectious (contagious) 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 keep bacteria from spreading in your room.
• You cannot have fresh, dried, or live flowers or plants in your room. Please tell your family and friends not to bring or send them.
• For adult patients, visitors must be at least 12 years old. Any visitor younger than 18 must be with an adult who can actively supervise them throughout their visit.

Exercise

You’ll feel tired after your chemo and CAR T cell infusion. Still, you should try to stay active and get out of bed each 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 while you’re walking around. Your nurse will tell you if you also need to wear gloves, an isolation gown, or both. Do not go to a different floor when you’re walking or exercising.

A physical therapist and an occupational therapist may see you in the hospital. They’ll check how you’re doing and give you therapy if you need it.

Diet

Your CAR T team will plan your diet. You will get a menu and instructions for ordering your meals. A room service associate will bring your meals to you.

Tell a member of your care team if you keep kosher, have diabetes, or follow another special diet. We will prepare your meals properly. A clinical dietitian nutritionist can also help you plan your meals.

Showering

It’s best to shower daily. A patient care technician or nursing assistant can help you manage your IV pole and keep you safe while you’re showering.

What to expect at the Outpatient Cellular Infusion Unit

During an outpatient CAR T cell infusion, you’ll get most or all your care in the Cellular Infusion Unit. You’ll visit the unit as often as needed based on how your CAR T treatment is going and if you are having side effects. We’ll only admit you to the hospital if you need more care than we can give you as an outpatient.

What to bring to the Outpatient Cellular Infusion Unit

• A list of all prescription and nonprescription medicines you’re taking, their dosages, and how often you take them. This should include patches, creams, vitamins, nutritional supplements, herbal products, and over-the-counter medicines. An over-the-counter medicine is one you can buy without a prescription.
• All the prescription medicines you were told to take during your CAR T cell therapy.
• Things to pass the time, such as books, newspapers, an audio player, a laptop, or tablet. Do not forget the charger for your electronic items.
• A notebook to write down information and any questions you or your caregiver have.

What to expect while you’re in the Outpatient Cellular Infusion Unit

Wear comfortable clothing. Wear clothing that makes it easy to access your CVC. This can be a shirt that opens in the front, a sweatshirt, or a large T-shirt. Do not wear clothing that’s hard to take off or put back on.

After you arrive

After you check in, a member of your care team will bring you to a room. They will:

• Check your vital signs and weight.
• Ask you about any symptoms you have.
• Check your blood counts, electrolyte levels, and kidney function (how well your kidneys are working).

Then, you’ll wait in your room for your test results to be ready. This can take a few hours. You’ll have an entertainment unit with a TV and computer to pass the time. You can also bring food and snacks with 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 your caregiver takes this time to relax.

Planning your care

Your CAR T team will plan your care after they get the results from your blood tests. 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 medicines.
• Your treatment could be left as is.

You’ll stay in the unit until you finish your treatments. After that, your caregiver will take you to where you’re staying.

Read About Your Appointments in MSK’s Cellular Infusion Unit to learn more.

What to do in your home or apartment

Your caregiver will take care of you when you’re not in the Cellular Infusion Unit.

We will give you a printed copy of Outpatient Cellular Therapy Emergency Guide. Keep it out in your home or apartment so you and your caregiver can get it easily.

Carry your outpatient cellular therapy emergency card with you

You’ll 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 your temperature

From the time you start getting your chemo, you or your caregiver must take your temperature every 4 hours while you’re awake. We will give you a thermometer.

Keep track of how much you drink

Drink 2 liters (64 ounces) of liquids every day. This is about 8 cups. Try to drink small amounts throughout the day. Your caregiver will be asked to keep track of all the liquids you drink.

Move around and exercise

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

What to expect after your CAR T cell infusion

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

Early recovery after inpatient CAR T cell infusion

If you get your CAR T cells while inpatient, you’ll stay in the hospital for 7 to 10 days or longer after your infusion. How long you stay in the hospital depends on whether you have side effects and how severe they are.

If you live more than 1 hour from MSK, you must stay near the hospital after you’re discharged.

Your CAR T team will give you discharge instructions before you leave the hospital. Here are some guidelines to follow:

Call your CAR T team if you have:

• A fever of 100.4 °F (38.0 °C) or higher
  • Chills
  • Confusion
  • Hallucinations (seeing or hearing things that are not there)
  • Headaches
  • Seizures
  • Dizziness or lightheadedness
  • Trouble breathing
  • Bleeding
  • A faster heart rate than usual
  • Severe nausea, vomiting, or diarrhea
  • Pain
  • Any other changes in condition
• Do not drive until your care team says it’s OK.
• Carry your wallet card with you at all times. Show it if you go to the emergency room, urgent care, hospital, or when you see a doctor.
• If you go home with your CVC, your nurse will teach you how to care for it at home.
• Avoid family and friends who may be sick.

Early recovery after outpatient CAR T cell infusion

If you had an outpatient CAR T cell infusion, you’ll have daily appointments for the first 7 to 10 days after your infusion. Your appointments will be at the Cellular Infusion Unit. During your visits, your CAR T team will check how you’re doing and help manage any side effects you’re having. You may be admitted to the hospital if needed to manage your side effects.

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 still required to come to all your scheduled appointments.

Between 2 and 4 weeks after your CAR T cell infusion, you may start having appointments in your doctor’s regular clinic instead of the Cellular Therapy Infusion Unit.

What to expect during long-term recovery

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

You’ll have appointments with your CAR T team about 30 days, 90 days, 6 months, 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 oncologist (cancer 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.

Around 3 to 6 months after your infusion, you’ll have a blood test to check how well your immune system is protected against certain infections. It also helps your CAR T team decide if you need to get any vaccines (shots) again.

Educational resources

This section lists the educational resources mentioned in this guide and some other resources that may be helpful.

You can find these resources online or you can ask for a printed copy. You can also visit www.msk.org/pe to search for more educational materials on the Patient and Caregiver Education website.

• About Cytokine Release Syndrome (CRS) and Neurotoxicity Syndrome
• About Your Appointments in MSK’s Cellular Infusion Unit
• About Your Blood Transfusion
• About Your Peripherally Inserted Central Catheter (PICC)
• About Your T Cell Collection
• About Your Tunneled Catheter
• Advance Care Planning for People With Cancer and Their Loved Ones
• Call! Don't Fall!
• Communicating With Your Care Team: When to Call or Use MSK MyChart
• Food Safety During Cancer Treatment
• Hand Hygiene and Preventing Infection
• How To Be a Health Care Agent
• Improving Your Vulvovaginal Health
• Instructions for Interventional Radiology Procedures
• Outpatient Cellular Therapy Emergency Guide
• Sex and Your Cancer Treatment
• Urgent Medical Care for MSK Patients
• Your Hospital Room During Your Inpatient Cellular Therapy: What To Expect