Preparing for CAR T-cell therapy

What is the timeline for CAR T-cell therapy?

1. If you’ve been told CAR T-cell therapy could be an option for you, you’ll be referred to your closest CAR-T centre where you will meet a specialist doctor and talk about the treatment in more detail.
2. If you decide to go ahead, a panel of clinical experts will need to agree that CAR T-cell therapy is an appropriate treatment for you. They will discuss your history and ‘performance status’.
3. If approved, your T cells will be collected in a process called apheresis and scientists will create your new CAR T-cells. Read more about this on our What is CAR T-cell therapy? webpage. You might need holding therapy before having your T cells collected. Your medical team will discuss this with you.
4. You might have bridging treatment to keep your disease under control while your CAR T-cells are being made.
5. You will have some tests during this time, too. These tests will make sure you’re still well enough to have CAR T-cell therapy. Read more about these tests below.
6. Your hospital might have a prehabilitation programme. Prehab can help your physical fitness and mental health before treatment.
7. You will have chemotherapy about a week before you receive your new CAR T-cells. This is called lymphodepletion.
8. You will go into hospital to have your new CAR T-cells infused. Read more about this on our Having CAR T-cell therapy webpage.
9. You will stay in hospital for up to 28 days before going home to continue your recovery.

Tests before your CAR T-cell therapy

You can have a number of tests before your CAR-T therapy:

Echocardiogram

This test, sometimes called an ‘echo’, is an ultrasound scan of your heart and blood vessels. It checks your heart function and blood flow is healthy.

Electrocardiogram (ECG)

An ECG will show the electrical rhythm of your heart and check it’s beating regularly

Glomeruler Filtration Rate (GFR) test

This checks your kidneys to make sure they are working well.

Blood tests

You will have a number of blood tests to check for viruses and to monitor your blood cell count.

CT/MRI/PET scans/bone marrow aspiration (BMA)

These scans will see how your disease has responded to treatment so far. They can also help to check the risk of side effects after CAR-T therapy.

Lung function test

This will check your lungs are working properly.

Chest X-ray

This takes images of your heart, lungs, and chest to check their structure.

Dental check

A dentist might look at your teeth to check their health and for risk of infection.

Holding therapy and bridging treatment

You might need holding therapy before your T cells are collected to help keep your disease under control.

You might also need some extra treatment while your CAR T-cells are being made to keep your disease under control, and to keep you as healthy as possible. This is called bridging treatment and might be chemotherapy, radiotherapy or steroids.

Bridging treatment and holding therapy may make you feel unwell. Your medical team will help make you feel as comfortable as possible – make sure you’re honest with them about how you’re feeling.

Prehab

Prehabilitation (prehab) is about getting your body and mind as ready as possible for your treatment. Your hospital might not have an official prehab programme, but it can be helpful to learn more about it.

You might also have conversations with your medical team about Advance Care Planning (ACP). This can help with future decision-making about your care.

Read more on our Prehabilitation (prehab) and stem cell transplant webpage.

Chemotherapy before going into hospital

You will have a course of chemotherapy about a week before you have your CAR T-cells infused. This is called lymphodepletion.

This chemotherapy will:

• create space for your CAR T-cells
• prepare your body for treatment.

You will be monitored after your chemotherapy to check for signs of infection and make sure you are healthy enough for your infusion day.

You might stay in hospital for your chemotherapy, and then remain in hospital for your CAR-T infusion. Your medical team will let you know if this is the case.

What to bring with you to hospital

You’ll be in hospital a few times during your treatment, from tests beforehand to infusion day itself. There will be some waiting around and times in isolation, so it’s good to keep yourself busy.

Here are some ideas of things to bring with you for your stay in hospital:

• Your phone (and a charger!) with music and podcasts already downloaded if you struggle with hospital signal.
• A tablet or laptop with TV shows, films or games already downloaded. Remember headphones, too. Ask your medical team if you’ll have access to WiFi.
• Books, magazines and newspapers. Nurses on your ward might be able to get the latest magazines and newspapers for you from the hospital.
• Puzzle books, writing paper, or sketchpads. If you want to write letters, bring some stamps and your nurses may be able to post them for you at the hospital.
• Photos or posters to make your room more homely.
• Hobbies, like sewing or knitting, playing cards and other games.

You should also bring in some essential items:

• A new, soft-bristled toothbrush and a new tube of fluoride toothpaste.
• Hypoallergenic baby wipes.
• A new (or freshly cleaned) pair of non-slip, backed slippers.
• A new (or freshly cleaned) dressing gown.
• Your own day clothes and nightwear. Your hospital will tell you how often they need to be washed or changed.
• You can bring your own duvet covers and pillow cases for home comforts. They must be washed regularly by family or friends.
• Unperfumed toiletries. It might be nice to use your own toiletries but discuss the products you use with your medical team. Your skin can be sensitive after chemotherapy.
• You will not be able to wear contact lenses while your blood counts are low as there is a risk of infection. Make sure you bring glasses with you instead.

Looking after your mental health

You might be feeling lots of different emotions before your CAR T-cell therapy. You might feel anxious, relieved, confused or excited. All these feelings are common, and you might feel them all at once. It can be an overwhelming time.

Make sure you’re honest with your medical team about how you’re feeling. They will be able to help with any questions you have and should be able to soothe any worries. They may be able to refer you to a counsellor or psychologist if that would be helpful.

Here are some top tips:

• Write down any questions you have as soon as you think of them. It will help you to remember everything you want to ask.
• Write down your feelings, too. Maybe you can have a journal. You can either share this with your medical team, or family and friends, or keep it for yourself. Sometimes it can help enough to write things down.
• Ask for help if you need it. Family and friends want to help and it can be hard for them to know how. Ask for specific, practical help, like:
  - coming with you to hospital appointments for support
  - looking after your children, pets or plants
  - doing some shopping for you
  - cleaning your home
  - a coffee or lunch date to talk about how you’re feeling – or to not talk about your treatment at all! It’s good to give your brain a break.
• You can feel strong and vulnerable at the same time. Be kind to yourself.

Other things to think about

Side effects

You might experience side effects after CAR T-cell therapy. It can be helpful to be prepared for the possibility of these side effects before you begin treatment. Read more about side effects of CAR-T therapy.

Fertility

Your fertility might be affected by having CAR-T therapy. Make sure you ask your medical team how you might be affected. Our information about fertility and stem cell transplant may also be relevant.

Anthony Nolan Grant

You might be able to apply for an Anthony Nolan Grant to help with your finances. Read more about our grants.

FAQs

• This information was developed in partnership with Blood Cancer UK