TIL Therapy: A Guide for Adult Patients & Caregivers

This guide explains tumor-infiltrating lymphocyte (TIL) therapy. It will help you and your loved ones understand what to expect before, during, and after your TIL therapy.

This guide should not replace talking with your TIL 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 TIL therapy and recovery. You may not face all of them. Try not to compare yourself to other people who had TIL therapy. Everyone is different.

Communicating with your care team

It’s normal to have many kinds of emotions during TIL therapy. It’s very important to talk with your TIL team and your caregiver about how you’re feeling physically and emotionally.

Your TIL 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 TIL 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 TIL team, the more they can help you.

Here are some ways you can communicate with your TIL team.

Communicating by phone

Communicating in person

Talk with any member of your care team. When you’re in the hospital (inpatient), it’s important to talk with your inpatient team, not the outpatient office. Your inpatient team is the 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 when 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 TIL team will use MSK MyChart to check in about how you’re feeling physically and mentally over time. They’ll send you a set of questions, called PROMIS. Your TIL team will send PROMIS questions to your MSK MyChart account:

• On or near the day you start TIL treatment.
• On the day of your TIL infusion.
• Every 7 days for the first month after your TIL infusion.
• Every month for the first year after your TIL infusion.
• Every 3 months for the second year after your TIL 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’ll call you to help.

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

About TIL therapy

TIL 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).

TIL is a treatment for melanoma that has spread, or metastasized, to other places in the body. We’re still learning about how it can be used to help treat other types of cancers.

What are tumor infiltrating lymphocytes (TILs)?

Lymphocytes (LIM-foh-sites) are a type of white blood cell. They’re an important part of your immune system. They help your body fight infections and diseases, including cancer.

TILs come from a tumor. Infiltrating (IN-fil-trey-ting) means to enter, and these lymphocytes are found inside the tumor.

What will happen during TIL therapy?

TIL therapy is broken into 6 main steps, or phases.

Before you start TIL therapy, you’ll have a few medical tests to make sure TIL therapy is right for you. Your insurance company may also need some test results before it approves your treatment. Your care team will talk with you about which tests you need.

Phase 1: TIL harvest

The first step in TIL therapy is surgery to take out the tumor and collect its TIL cells. This is called the TIL harvest. The tumor can be the primary tumor (where cancer started) or a tumor that spreads to another area.

Most often, your surgeon will choose the tumor that’s easiest to take out. This will let you recover from surgery faster so you’re ready to start the next part of treatment. Sometimes, your surgeon may take a sample from more than 1 tumor. This depends on where the tumors are in your body.

Read the section “TIL harvest surgery” to learn more.

Phase 2: TIL expansion

After your TIL cells are harvested, we send the sample to a lab. In the lab, the TILs are isolated (separated from other types of cells) and grown in larger numbers. This is called TIL expansion. It takes about 5 to 6 weeks.

While your TIL cells are in the lab:

• You may get chemotherapy (chemo) or other treatments to help control your cancer before your TIL treatment starts. This is called bridging treatment.
• You will have your pretreatment evaluation and preadmission testing.

This is also a good time to finish planning for your TIL therapy. It’s very important to make plans for where you’ll stay. You also must choose your caregiver.

Read the sections “Getting ready for your TIL infusion” and “Caregiver requirements for TIL therapy” to learn more.

Phase 3: Lymphodepleting chemotherapy

Once your TIL cells are ready, the lab will send them back to MSK. You’ll also get chemo to help get your body ready for your TIL 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-dee-PLEE-shun) is the process of lowering your white blood cell numbers with chemo. Having fewer white blood cells will help the TIL work better at finding and killing cancer cells. It also gives the TIL room to grow.

Most people get lymphodepleting chemo in the Outpatient Cellular Infusion Unit. It’s most often done a few days before the TIL infusion. Your clinical nurse coordinator will give you your schedule. They’ll talk with you about what to expect. Your schedule depends on your medicine and treatment.

Read the section “What to expect at the Outpatient Cellular Infusion Unit” to learn more about what to expect during your appointments. You can also read About Your Appointments in MSK’s Cellular Infusion Unit.

Phase 4: TIL cell infusion

You’ll be admitted to the hospital for your TIL cell infusion. Most people are admitted the day before their infusion.

You’ll get your TIL cell infusion in your hospital room. During your infusion, the TIL cells will be slowly put into your bloodstream over time. The infusion usually takes about 30 to 60 minutes. You can have visitors during your TIL infusion based on the guidelines in MSK’s Visitor Policy.

After your TIL cell infusion, you’ll get infusions of high-dose interleukin-2 (IL-2) (aldesleukin). IL-2 is a medicine that helps the TIL cells grow, divide, and start working. It also helps them multiply in your body.

Read the section “What to expect in the hospital” to learn more.

Phase 5: Early recovery

Early recovery lasts for about 4 weeks after your TIL infusion. Your TIL team will see how you’re doing and manage your side effects during your early recovery.

You’ll stay in the hospital for at least 1 week after your TIL infusion. After that, you may need to stay nearby for outpatient follow-up appointments a few times a week.

Read the sections “What to expect in the hospital” and “What to expect at the Outpatient Cellular Therapy Infusion Unit” to learn more.

Phase 6: Long-term recovery

Long-term recovery lasts several months after your TIL infusion. During this time, your care team will monitor your recovery and watch for signs of infection.

At first, you’ll have appointments with your TIL team. After a few months, you may be able to go back to seeing your primary (main) doctor.

While uncommon, some people need to come back to the TIL team for more care. This may include being seen in the outpatient clinic or being admitted to the hospital.

Read “What to expect during long-term recovery” to learn more.

Your TIL therapy team

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

Here’s a list of your TIL therapy team members and their roles.

• A cellular therapy doctor will be in charge of your care throughout your treatment. You’ll have one primary (main) outpatient doctor. Different doctors may care for you while you’re in the hospital, but they’ll be in contact with your primary cellular therapy doctor as needed.
• A surgeon with special training in cancer surgeries will take out tumor tissue as the first step in TIL therapy.
• 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).
• A clinical nurse coordinator (CNC) is a nurse who works with you, your caregiver, and your team of doctors. They’ll 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’ll 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’ll 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 TIL 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 TIL 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 have questions for your TIL 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 TIL 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 requirements for TIL therapy

You must have a clear caregiver plan to get TIL therapy. There are no exceptions.

TIL 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’ll watch for symptoms and call your care team right away if something seems wrong.

Choosing a caregiver

Choosing your caregiver is an important step in getting ready for your TIL therapy. They’ll 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’ll give you information about these services.

What a caregiver does

Your caregiver must be available 24 hours a day, 7 days a week. They may not be able to work. They must stay with you day and night. Your caregiver can have some personal time while you’re in the Cellular Infusion Unit for your visits. We strongly recommend they take this time.

The exact length of time you’ll need 24/7 caregiver support may vary. Most people need a caregiver for about 28 days after their TIL infusion.

Your TIL team will give your caregiver instructions about what they need to do. They’ll be responsible for some of the medical, practical, and emotional support you’ll need. Here are some of the things they must do.

Medical support

• Look out for symptoms. Tell your outpatient cellular therapy team about any symptoms you have.
• Read Outpatient Cellular Therapy Emergency Guide to learn what to do in case of any emergency.
  • Call your outpatient cellular therapy team with any concerns. 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 Outpatient Cellular Infusion Unit.
• Make sure you take your medicine.
• Keep track of how much you drink each day.
• Know how to take care of your central venous catheter (CVC).

Practical support

• Take you to and from your appointments.
• 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 condition.
• Manage how many visitors you have.
• Keep you away from anyone who’s sick.

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 TIL therapy is full time, 24 hours a day, 7 days a week. It can be tiring, demanding, and stressful. That’s even more true if your condition, schedule, or treatment changes.

Your TIL 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.

Resources for caregivers

‌ Caregivers can have physical, emotional, spiritual, and financial distress. There are resources and support to help manage the many duties of caring for a person having TIL therapy.

Contact your social worker for support resources and information. MSK’s Caregivers Clinic supports caregivers who are having a hard time coping with the demands of being a caregiver. To learn more, visit www.msk.org/caregivers or call 646-888-0200.

Getting ready for your TIL infusion

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 TIL team. Your doctor will:

• Talk with you about your health and surgery history.
• Do a physical exam and other medical tests. Your care team will talk with you about what to expect.
• Talk with you about options for TIL harvest sites.
• Talk with you about what’s the best treatment plan for you.
• Explain what to expect during your TIL therapy.
• Ask you to sign a consent form for TIL therapy. A consent form is a form that says you agree to the treatment and understand the risks.

Surgical consult and presurgical testing (PST)

You’ll have an appointment with your surgical team before your tumor harvest. During this appointment, your surgeon will review your imaging scans. They may order more tests to help them choose the best area to take tumor samples. The goal is to collect enough tumor tissue that has TILs.

Your surgical team will also talk with you about:

• What to expect before, during, and after your surgery.
• How to get ready for your TIL harvest surgery.
• What to do while you recover after your surgery.

They’ll give you time to ask questions. Then, they’ll ask you to sign a consent form for surgery.

Other things to do before TIL therapy

Here’s a list of other things to do to get ready after you have your initial consult.

• 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.
• Meet with a social worker. They’ll tell you about MSK’s psychological, emotional, and financial support services and assess if you need any support. They’ll 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.
• 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’ll be away from work. They’ll 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 TIL therapy.

It’s also important to make sure you have a clear caregiver plan. Read “Caregiver requirements for TIL therapy” to learn more.

TIL harvest surgery

There are 2 ways TIL harvest surgery can be done.

• With a minimally invasive surgery, your surgeon will make a few small incisions (surgical cuts). They’ll put a long, thin camera through one of the incisions so they can see inside your body. They’ll put long, thin surgical tools through the other incisions to take out tumor samples.
• With a traditional (open) surgery, your surgeon will make 1 or more bigger incisions to take out tumor samples.

How your surgery is done depends on where the tumor or tumors are in your body. Your surgeon will talk with you about what to expect.

Your TIL harvest surgery will be early in the morning. Your TIL surgeon will tell you how long to plan to stay in the hospital after your surgery. Some people leave the same day as their surgery. Others stay for 1 to 2 nights.

Your TIL surgeon will tell you when you can go back to your regular activities after surgery. They may schedule follow-ups after your surgery to check how you’re healing and see how you’re feeling.

Pretreatment evaluation

We’ll check your overall physical condition again before your TIL infusion. This will help us make sure you’re ready for treatment. It will also help your TIL 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 before your TIL harvest, 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 give your TIL therapy 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 an imaging 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 must take medicine before you get the dye so you do not have a reaction.
• 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.
• Brain magnetic resonance imaging (MRI) scan. This is done to look at your brain and how it works.

Your TIL 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.

Preadmission appointment

You’ll have your preadmission appointment after you finish your pretreatment evaluation and your TIL infusion is scheduled. Sometimes, the preadmission appointment is the same day as the pretreatment evaluation.

The preadmission appointment is usually about 1 week before your scheduled TIL infusion. You must come to this appointment in person. It cannot be a video visit.

During your preadmission appointment:

• Your cellular therapy doctor will go over your treatment plan and consent forms with you. You’ll sign consent for your TIL therapy 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 may 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 TIL 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 TIL 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 before you’re discharged from the hospital after TIL. Some people keep their CVC for longer if they need blood transfusions or other infusions after discharge.

What to expect in the hospital

You’ll be admitted to the hospital for your TIL infusion. After your infusion, you’ll stay in the hospital for 1 to 2 weeks. How long you stay in the hospital depends on how your body reacts to the cells.

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 TIL therapy. All the units follow the same guidelines.

The day of your TIL infusion

You’ll have a general check-up on the day of your TIL infusion. Your nurse will ask you simple questions to check your neurological (brain) function. They’ll use these as a baseline later if you have side effects. You’ll also get medicine to help keep you from having a reaction to the infusion.

Your inpatient care team will tell you what time you can expect to get the infusion.

During your TIL cell infusion

Your healthcare provider will give you the TIL infusion through your CVC. The infusion can take 30 to 60 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 TIL infusion: Your IL-2 infusions

IL-2 is a medicine that helps your TILs grow after they’ve entered your immune system.

You may start getting IL-2 infusions anywhere from 3 to 24 hours after your TIL infusion. Your team will check how you’re doing before every IL-2 infusion to see if you need another dose. You may get up to 6 IL-2 infusions.

We’ll watch you closely for side effects. Here are some common side effects of IL-2:

• A fever of 100.4 °F (38 °C) or higher
• Flu-like symptoms, such as:
  • Muscle aches
  • Headaches
• Shaking chills (feeling cold and having strong shivering)
• Feeling very tired
• Shortness of breath
• Swelling in your arms or legs
• Nausea
• Vomiting
• A faster heart rate than usual
• Feeling dizzy or lightheaded
• Confusion
• Changes in eyesight
• Seizures
• Feeling very drowsy and responding more slowly than usual

Not everyone responds the same to each type of therapy. Talk with your care team about the side effects you may be more likely to have and how long they may last. These things can change based on the number of IL-2 infusions you get and if you have other health conditions.

These side effects will go away. 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 your care team if you may be having any of these side effects.

Throughout your hospital stay

Your inpatient care team will care for you and keep watching for side effects. 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 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 TIL 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 in your room.
• 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’ll also have these tests and evaluations regularly:

• Your care team will check your vital signs every 4 hours, even at night. This includes your 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 how your white blood cells, red blood cells, and platelets are recovering.
• We’ll do other blood tests as needed. These tests check how well your kidneys and liver work and check for infections. The tests also tell us the level of chemo or other medicine in your blood. 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’ll 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 TIL 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 TIL 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 must also wear gloves, an isolation gown, or both. Do not go to a different floor when you’re walking or exercising.

You may meet with a physical therapist or occupational therapist while you’re in the hospital. If you do, they’ll prescribe an exercise program that’s right for you.

Diet

Your TIL 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’ll 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

After you’re discharged from the hospital, you’ll have follow-up appointments at the Outpatient Cellular Infusion Unit. During your visits, your care 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.

You may be able to have appointments less often as time passes after your TIL infusion. 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.

You’ll start having appointments in your cellular therapy doctor’s regular clinic instead of the Cellular Infusion Unit about 4 weeks after your TIL infusion.

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 TIL 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.

Your care team may give you an Outpatient Cellular Therapy Temperature and Liquid Intake Log. If they do, bring it to your appointments. Your caregiver will use this to keep track of your temperature and how much you drink while you’re away from the unit.

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

Wear comfortable 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 care 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. If you live more than 2 hours from MSK, you may need to stay near the hospital. Your social worker will help you arrange this if needed.

We may give you a printed copy of these resources, or you can find them online. Keep them out in your home or apartment so you and your caregiver can get them easily.

• Outpatient Cellular Therapy Temperature and Liquid Intake Log
• Outpatient Cellular Therapy Emergency Guide

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

• Call the Cellular Infusion Unit at 646-608-3150 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 (very bad) nausea, vomiting, or diarrhea
  • Pain
  • Any other changes in condition
• If you go home with your CVC or PICC, your nurse will teach you how to care for it at home.
• Avoid family and friends who may be sick.

Carry your outpatient cellular therapy emergency card with you

You’ll get an Adult Outpatient Cellular Therapy Emergency Card (Wallet 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, if needed

Your care team may ask you and your caregiver to take your temperature every 4 hours while you’re awake. We’ll give you a thermometer.

Keep track of how much you drink, if needed

Drink 2 liters (64 ounces) of liquids every day. This is about 8 cups. Try to drink small amounts throughout the day.  

Your care team may ask you and your caregiver to keep track of all the liquids you drink in the Outpatient Cellular Therapy Temperature and Liquid Intake Log.

Check for bleeding

Always tell someone from your care team if you have any bleeding. If you notice you’re bleeding and you’re not in the Cellular Infusion Unit, follow these steps right away:

Move around and exercise

You’ll feel tired after your chemo and TIL 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 during long-term recovery

Long-term recovery is different for everyone. Most people take medicine to help prevent infection for a few months while their white blood cells recover from chemo. It depends on your situation and how the cancer reacts to your TIL therapy. Your TIL team will talk with you about what to expect.

Appointments with your TIL team

You’ll have appointments with your TIL team 4 weeks, 6 weeks, and 12 weeks after your TIL 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 positron emission tomography (PET) scan or computed tomography (CT) scan.

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

Going back to your primary doctor

Your TIL 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 TIL team on how you’re doing.

Testing for vaccination status

After TIL therapy, some of your past vaccines may no longer protect you. Around 6 months after your TIL infusion, you’ll have blood tests to check if you still have immunity from your past vaccines. You may need to get some of the vaccines again. If you do, your care team will talk with you about which ones. They’ll also make a vaccination schedule for you.

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 Your Appointments in MSK’s Cellular Infusion Unit
• About Your Blood Transfusion
• About Your Peripherally Inserted Central Catheter (PICC)
• About Your Tunneled Catheter
• Adult Outpatient Cellular Therapy Emergency Card (Wallet Card)
• 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
• Mouth Care During Your Cancer Treatment
• Outpatient Cellular Therapy Emergency Guide
• Outpatient Cellular Therapy Temperature and Liquid Intake Log
• Sex and Your Cancer Treatment
• Sexual Health and Intimacy