Going home after CAR-T therapy

You will need to stay close to Liverpool for at least 28 days from the date you have your CAR-T therapy, so you are nearby if you feel unwell. If you live more than an hour away, we will arrange accommodation for you closer to the hospital – free of charge.

For the first 28 days after your CAR-T infusion, someone must be with you day and night. This is because there is a small risk of serious side effects that can affect your brain (called neurological toxicity).
This person must be able to act on your behalf and take you to the hospital if needed.

You must not drive for 8 weeks after your infusion. If you had a seizure during your treatment, you must not drive again until a neurologist says it is safe.

Driving against advice could affect your insurance.

You’ll be given a special CAR-T alert card. Always carry it with you. Show it to medical staff if you need to go to the hospital for any reason.

Some side effects, like Cytokine Release Syndrome (CRS) or neurological symptoms, can happen even after you leave the hospital. These can be treated if caught early, so it’s important to watch for them and take any necessary action.

Call your team right away if you notice any of the following:

• Confusion, drowsiness or trouble speaking, writing or finding words
• A temperature over 38°C, two readings over 37.5°C more than 2 hours apart or a temperature below 36°C
• Cold or flu-like symptoms – like a runny nose, sore throat, or cough
• Unusual bruising or bleeding
• Trouble breathing
• Feeling dizzy or very sleepy
• New or ongoing diarrhoea or vomiting
• Persistent headaches

After CAR-T therapy, the most common serious issue is infection. Even if you feel okay, call the team straight away if you have signs of infection.

Check your temperature once or twice a day. Call us if:

• It’s over 38°C once
• Over 37.5°C twice, more than 2 hours apart
• Below 36°C

Your immune system is still recovering, so you’re more likely to get infections. 

It’s okay to go for short walks outside, but avoid busy places like shops, cinemas, or restaurants at first. Always wash your hands when you get home. Keep reporting any signs of infection to your team, even after a few months.

If you get COVID, you must be treated with anti-COVID medications, even if it’s a long time after CAR-T – unless your team says otherwise.

Rarely, brain or nerve problems (called ICANS) can happen weeks after you leave the hospital. They can be serious.

Make sure your family or care-giver knows the warning signs to look out for. Call the team straight away if you or they notice:

• Confusion 
• Difficulty communicating (not being able to remember words, difficulty speaking or writing)
• Hallucinations (seeing/hearing things that aren’t there)
• Feeling shaky
• Feeling agitated 
• Memory loss 
• Loss of coordination
• Fits/seizures 
• Reduced consciousness
   

CAR-T therapy can lower your blood counts. These can include red cells, white cells, and platelets. 

You might need:

• Blood or platelet transfusions.  
• If your neutrophil count is low, we may give you injections to boost your white blood cell counts (G-CSF).  

The team will monitor your blood counts to see how you are responding and will let you know the arrangements if you need any of these treatments. 

Let the team know immediately if you have:

• Abnormal bruising
• Bleeding that won’t stop

Normal B cells are also part of the immune system and produce antibodies to fight infections. CAR-T lowers the number of B cells in your body. This will affect your ability to fight infections. After receiving CAR-T therapy, you might need antibody replacement (called immunoglobulins) to boost your immune system. These start as IV infusions but may change to injections at home over time. Your care team will let you know and plan if you need this treatment.

Some people need these for months or even years.

If you go home with a line:

• It will be removed as soon as possible, when it’s safe to do so.  Some people may need to keep their line in longer if they require blood or platelet transfusions, or any other treatment. 
• It needs weekly care – cleaning and dressing – at The Clatterbridge Cancer Centre or your local hospital. The team will help you make these arrangements.

Call the team if the area around the line gets red, swollen, painful, or starts leaking.

It’s important that you take all medications exactly as prescribed. You’ll get a full list before leaving hospital and the ward nurse will discuss this with you – it is useful if you bring this list to all appointments.

• Keep track of when you need refills so they can be ordered in plenty of time to make sure you do not miss any doses.
• CAR-T therapy medications will be prescribed by your hospital team at your appointments
• Other medications (for other health conditions) should still come from your GP

You’ll likely need to take:

• An antiviral tablet (e.g. aciclovir)
• An antibiotic to prevent infections (e.g. co-trimoxazole)

Your care team will monitor the recovery of your immune system and stop these when it is right to do so. Most people take these for at least 12 months.

Free prescriptions

• You are entitled to free prescriptions.
• To get this, you’ll need to fill out an FP92A form, which you can get from the hospital, your GP, or your local pharmacy.
• The form must be signed by either your hospital doctor or GP.

Only stop medications if your healthcare team tells you to. If you run out of any medication you are taking before your follow-up appointment, contact your care team.

You’ll need to have/restart some vaccines 3 to 6 months after CAR-T therapy. These include:

• A full new course of COVID-19 vaccines, as recommended by national guidance
• The annual flu vaccine when it is offered
• Vaccinations against childhood and other infections

We’ll contact you and your GP with instructions when the time is right.  

It’s important to know that vaccines may be less effective for you because CAR-T therapy has affected the way your immune system works.  

• Don’t have any live vaccines without talking to your team first
• Family and close contacts should also stay up to date with vaccines in line with current guidance

It may take a few months before your appetite is back to normal. Please continue to follow the advice in the 'Safer Eating – guidance for patients with a weakened immune system' leaflet as certain foods should be avoided. 

• You may still experience nausea and taste changes for a while after CAR-T therapy. Take anti-sickness tablets regularly, if required.
• Try to drink plenty (2 to 3 litres of fluid a day) and avoid alcohol, initially.
• It is important to eat well to help recovery and avoid excessive weight loss. Your appetite may be smaller after treatment. It may be helpful to eat small meals and snacks, little and often, or to add extra energy and protein to your meals.
• There is more information available on the Eating well and coping with side-effects page and a page for people following a vegan diet.
• If you have been prescribed supplement drinks, you may wish to continue these after discharge, whilst your appetite continues to recover. You can take some of the drinks home from hospital when you are discharged. 
• If you need more, your GP could prescribe them, using the details on your discharge letter. Alternatively, the team on day ward or at clinic can arrange for a repeat prescription.
• If you are concerned about weight loss, or that you are not eating well, please discuss these concerns with the team on day ward, at clinic, or with your GP.

You’ll likely feel tired for months after treatment. This is normal.  

• Try gentle activity each day
• Listen to your body and rest when you need to
• Your energy levels will ‘fluctuate’ don’t do too much on ‘good days’ – pace yourself.  This may feel difficult to do but it will help to reduce your fatigue and improve your wellbeing.

If you’re struggling, your physiotherapy team can help with a plan to build your energy, get stronger and more active.

When you're feeling ready, you can resume sex – it’s okay to resume your usual sexual activity as long as you maintain good hygiene and don’t put yourself at risk of STIs (sexually transmitted infections). If your blood counts are low, check with your doctor first.

Changes to how you look or feel (e.g. hair loss, skin changes, changes in weight) can affect how you feel about intimacy and sexual contact. Talk to your partner about how you feel or your care team if this is worrying you.

Most chemotherapy, including that given before CAR-T therapy, can adversely affect your fertility. However, this may only be a moderate effect, and you should assume you may still be fertile. 

• Use reliable contraception for 12 months after CAR-T therapy.

Talk to our care team if you need advice about contraception or if you are thinking about starting a family. They will be able to advise you about safe contraception or conception.
 

Most people need at least 6 months off work. It depends on your job and recovery. If you have a stressful or physically demanding job, or one that requires contact with a lot of people or is set in a dusty environment, you may need longer.

Start part-time if possible. Be open with your employer. We can help and support with any conversations needed.

Information about going back to work on the Anthony Nolan website.

You can think about holidays when you're stronger. There are no set rules about holiday, but we advise:

• Don’t travel abroad in the early months of your recovery
• Make sure you have good travel insurance for your trip
• Tell insurers your full medical history so insurance is valid