Recovery following CAR T-cell therapy

Leaving hospital can bring up mixed feelings. You may be excited about going home after being away for a long time. But you may also feel nervous about coping at home and wonder how successful the treatment has been. These feelings are normal, and your team will support you if you have any problems or concerns. 

When you are ready to leave hospital, your team will talk to you about going home. Your CNS or keyworker will spend time with you explaining your follow-up care and anything you need to watch out for when you get home. They will also remind you who you can contact for advice. 

Before you go home, we will make sure that: 

• Your blood counts are at a safe level. They may not be at normal pre-treatment levels yet. 
• Your side effects have improved. 
• You are eating and drinking. 
• You are walking about by yourself. 
• You can take your tablets and you don’t need to take medicines intravenously through your lines. 

We will let you know if your PICC needs to be removed before you leave the hospital. 

Your recovery period following CAR T-cell therapy may be different to someone else’s, but generally it takes several months for most people to fully recover. You will have regular hospital appointments for the first few months after your treatment. Your follow-up care will be shared between your UCLH team and your local hospital team. 

We will ask you to have a blood test either at your local hospital or at UCLH one week after you leave hospital. This may be sooner if some of your blood counts have not returned to normal before you go home. How often you will need blood tests after that depends on your results at the time. Some people need bloods once or twice a week at first, but you may not need them this often. 

Your PICC will need to stay in place until your blood counts are stable. More information is available in the next section on this page ‘Blood count support’. If you go home with your PICC, the line will need to be flushed and the dressing changed every week. You can have this done at UCLH or your local hospital. At home you should keep the dressing clean and dry. If you notice any swelling, redness, pain or pus at the site of the line, please contact us. For more information about PICCs, visit our page Peripherally inserted central catheters (PICCs).

You will have a PET scan one and three months after your CAR T-cell infusion. This may be done at UCLH or your local hospital. 

If you had your infusion as part of a clinical trial, your PET scans will be listed in your trial schedule. Your trial schedule will also include other tests, such as bone marrow biopsies or CT scans. Your keyworker will provide you with the schedule so that you can plan for your appointments. You will need to come to UCLH for these scans and tests. 

CAR T-cell therapy can lower the levels of certain blood cells: 

• Red blood cells, which carry oxygen around your body. 
• Neutrophils, a type of white blood cells that help to fight infections. 
• Platelets, which help your blood to clot. 

Depending on your blood test results, you may need treatment to help boost your blood counts. For example:  

• Platelets and red blood cells can be replaced with blood transfusions. 
• White blood cell counts can be boosted with GCSF injections, also known as growth factor injections. 

Your team will advise if you need any of these treatments and how often you may need to have them. They will also give you more information about the treatments and tell you where they will take place. This will either be in your local hospital or at UCLH. 

Very rarely , GCSF can cause the spleen to rupture. If you feel a sharp and severe pain on the left side of your abdomen, go to your local Emergency Department (A&E) without delay. Tell the staff that you are taking GCSF injections.

If you need blood transfusions after CAR T-cell therapy, you will need a special type of blood called ‘irradiated blood’. This blood has been treated with radiation to prevent graft-versus-host disease. We will give you more information about this and answer any questions you may have. We will also give you a card that states you need irradiated blood. As you will need irradiated blood for the rest of your life, it’s important to always carry this card with you. If you have not received the card, speak to your CNS or keyworker.

We have listed the most common medicines you may need to continue to take at home: 

• Antiviral (for example aciclovir). This medicine helps to prevent some viral infections, such as shingles. You will take it for at least 12 months after CAR T-cell therapy. Your CAR T-cell team may prescribe it for you again in the future if needed. 
• Antiseizure (for example levetiracetam). This medicine helps to reduce side effects from brain irritation caused by the CAR T-cells, known as neurotoxicity. Not everyone needs it, but if you do, it is usually reduced gradually and stopped soon after you leave hospital.  
• Pneumocystis jiroveci prevention (PJP). This is to protect your lungs from infections. While in hospital, you may take pentamidine inhaled through a machine called nebuliser or liquid atovaquone. After eight weeks, you may switch to tablets, depending on your blood test results. 
• Stress ulcer prevention (for example lansoprazole). This medicine helps to prevent stomach ulcers, acid reflux and mucositis (inflammation and soreness in your mouth or gut lining). If your symptoms improve, it is usually stopped before or at discharge. 
• Antifungal (for example posaconazole). This medicine helps to prevent fungal infections. It may be stopped before discharge, depending on blood test results. If your neutrophil levels drop later, you may need to restart it. 
• Immunoglobulin. Immunoglobulins are proteins in your blood that help protect you from infections. If your immune system is not working well, you may need extra immunoglobulins to boost it. This treatment is called immunoglobulin replacement. It is usually given once a month, either at UCLH or your local hospital. The treatment may stop once your immunoglobulin levels get better. 

You should only stop taking the medicines listed above when directed by your healthcare team. 

You may also go home with anti-sickness medication. You should continue taking it until your nausea has settled. You can stop it without consulting your healthcare team. 

If you run out of any medicines you are taking before your follow-up appointment, contact your GP.  

Important advice about steroids: 

Please avoid oral steroids after CAR T-cell therapy. Always consult the CAR T-cell team before starting any prescribed oral steroids You can still use inhaled steroids or steroid creams, ointments, and eye, ear or nose drops.

It’s important that you always carry the telephone numbers that we give you. If you are worried about anything, contact us on one of the numbers at any time of the day or night. We prefer you to speak to us rather than risk being unwell at home. 

Contact us straight away if:

• Your temperature goes over 38°C  
• You feel shivery, short of breath or generally unwell, even with a normal temperature. 

These may be signs of infection so we will advise you to go straight to your nearest Emergency Department (A&E). If you have not been able to speak to anyone in our team, you should head directly to your local A&E and contact us when you can.

• You become confused, have difficulty finding words, or experience any new tremors or weakness. 

These may be symptoms of delayed or recurrent neurotoxicity (brain irritation). If you experience any of these symptoms, contact us without delay. If you have not been able to speak to anyone in our team, you should head directly to your local A&E and contact us when you can.

• You have been in contact with someone who has an infectious disease, for example chickenpox or measles. 
• You continue to feel sick, be sick or have loose and runny poo, despite taking medication to relieve these symptoms. 
• You are unusually short of breath, either at rest or during an activity. 

It’s normal for your appetite to be affected after CAR T-cell therapy. Feeling sick or loss of appetite may continue for some time and can also affect what you feel like eating. Try to remember that food is medicine too and eating and drinking is necessary for your recovery. Your CNS or keyworker can refer you to the haematology dietitian if you need help or advice about your diet, or if you are worried about your food intake. 

Follow the tips below to help with your recovery:

• While your immune system is recovering, try to eat a healthy balanced diet and avoid risks of infection from food. 
• If big meals are too daunting, try to eat little and often. Snacks are always good. 
• Always make sure you eat foods within their ‘use by’ dates.  
• Cook in clean surroundings with clean hands. 
• Do not reheat foods. 
• Make sure meat, fish, shellfish, poultry and eggs are thoroughly cooked before eating them. 
• Wash salads and fruits well. 
• If going out to eat or getting a takeaway, use places you are confident have clean practices and where food is freshly cooked. 
• Drink two to three litres of fluid per day. You may need to drink more than this in summer. You will know if you are not drinking enough as your pee will be darker. 
• Check with your doctor before drinking alcohol. Alcohol slows down the recovery of the bone marrow and increases the risk of bleeding. It can also interact with some of your medicines. 

Fatigue is a common side effect following CAR T-cell therapy and can take a few months to improve. Fatigue is more than feeling tired. It will not go away with a good night’s sleep, but there are things you can do to improve your energy levels. This will be a gradual process; be patient with your body. 

• Pace yourself. Rest between tasks and activities. 
• Plan for the day and prioritise the things that are most important or that you enjoy. 
• Try keeping a diary to track your energy levels and activities. This can help you to see what you are able to do and notice your progress. Macmillan Cancer Support offers a fatigue diary you might find helpful.
• Don’t forget to ask for help with tasks if you need it. 

Your energy levels will go up and down, so try not to overdo it on days when you have more energy. It’s also important that you pace yourself on days when your energy is low. This may feel difficult but it will help with your fatigue and improve your wellbeing. 

If you are struggling to manage your day-to-day activities, ask to speak to an occupational therapist. 

Your sleep may also be affected when you have fatigue. Sticking to a consistent bedtime routine can help with sleep problems: 

• Aim to go to bed and get up at the same time each day. 
• Avoid drinks and food with caffeine near your bedtime. 
• Spend time relaxing; have a warm bath, do gentle stretching exercises or read. 
• Avoid screen time for at least 30 minutes before going to bed. 
• Try to keep your bedroom calm and relaxing. 

It’s also a good idea to limit your daytime sleeping to less than one hour. For example, you can set an alarm before taking a nap. If you sleep too much during the day, this will affect your sleep at night which is more valuable for managing fatigue. 

If you are worried that your fatigue is not improving after several months, speak to your healthcare team. You can also get some advice from a support and information specialist in the Macmillan Support and Information Service.

Being physically active is vital to your recovery. It can help to increase your energy levels if you have fatigue, and improve your wellbeing. 

It is common for your fitness and strength to decline during your hospital stay and treatment, especially if you were very unwell. We understand that being physically active may seem impossible, so try to avoid being too inactive for long periods of time to start with. For example, avoid sitting or lying down for longer than one hour at a time during the day. And try to stand up, step on the spot or walk regularly throughout the day. 

Gentle aerobic exercise, such as walking, is a good way to start getting active again. Ask a friend or family member to join you while you build your confidence. You can use a pedometer or step counting app on your phone to monitor your activity and record your progress as you move more each day. Setting a goal to walk further or for longer each week can also help to motivate you. Try adding exercise to your daily routine as this can make it easier to keep active. 

Muscle strengthening exercises are also important. To find out more, check out the websites listed below: 

• ‘Exercise and physical activity’ from Lymphoma Action 
• ‘Exercise’ from Leukaemia Care 
• ‘Exercises for myeloma patients’ from Myeloma UK. 

If you need more support to build up your activity or to return to exercise, ask to speak to a physiotherapist. They can guide and advise you on getting stronger and more active. The physiotherapist, or your GP, can also refer you to exercise programmes in your local area suitable for people recovering from cancer. They are often called ‘Exercise on Prescription’ or ‘GP Exercise Referral’ schemes. They are helpful if you would like to increase your activity and fitness levels.

Leaving hospital after CAR T-cell therapy can be a happy, yet daunting time. Adjusting to life after intensive treatment affects everyone differently. You may experience a wide range of emotions, either straight away or some time after completing the treatment. There may be times when you feel sad, worried, scared, anxious or depressed. Remember that there is no ‘normal’ or ‘right’ way to feel. Just be kind to yourself and know when and who to speak to for extra support. 

Feeling alone or isolated

CAR T-cell therapy is a novel treatment. You may feel that people don’t understand what you have been through or can’t relate to your experience. Speak to your CNS or keyworker to find out about available support groups, or to get in touch with others who have been through similar treatment. 

Some people find it challenging to adjust from a busy schedule of hospital appointments to less regular contact with their healthcare team. Remember that your CNS, keyworker and doctors will still be available if you want to talk about anything that worries you. It may reassure you that having fewer hospital appointments may be a sign that you are ready to move on from your treatment. 

Depression

It’s normal to reflect on and process what you have been through, and this can make you feel low or sad. CAR T-cell therapy is a life-changing treatment and comes with lots of uncertainty. If you are feeling constantly low or unable to enjoy the things you usually would, it may help to speak to someone. You could try your family and friends, or your CNS, keyworker, hospital doctor or GP. There is lots of support available in many forms to suit different people and their needs. Some examples include counselling, support groups, complementary therapy or exercise programmes. 

Anger and sadness

Grieving does not always involve the loss of someone. Many people who have gone through CAR T-cell therapy can grieve their life before the treatment. If you got bad news or knockbacks several times through the course of treatment, you may be asking yourself ‘why me’ at some point. 

Fear

It’s normal to feel scared about your disease coming back. You may have had several lines of treatment before CAR T-cell therapy and know all too well how it feels to have a relapse. Try to speak about these fears with your loved ones. Distraction techniques, such as mindfulness or exercise, can also help with being overwhelmed. If you would like some support finding what works for you, speak to your CNS or keyworker. 

Worry

You may be worried about relationships, money, relapse, your family, returning to work, body image, or many other things. It’s understandable. Speak to someone you trust about your worries or ask your CNS or keyworker to signpost you to other support available. 

Hope

When you notice improvements in your fitness, or feel you are making progress in your recovery, this may encourage you to make positive changes in your life. 

Determination

Focus on areas in your life that you are able to control, such as diet and exercise. This can help you to feel like you are regaining control of your situation. 

Having difficult conversations

It can be difficult to know where to start when it comes to talking about mental health. Have a think about who you can talk to. This may be a family member or a friend, or it could be a healthcare professional or someone in your community. Even if you are talking to someone who has not been through CAR T-cell therapy, they may still have experienced similar feelings to yours and could share ways they have dealt with them.

You may continue to experience pain following your CAR T-cell therapy. For example, pain you may have had after previous treatments can get worse or flare up during and after CAR T-cell therapy. Please let us know if this is a problem for you and we will make sure that you have effective pain relief to take at home. We will continue to assess and monitor your pain during your follow-up appointments. We can also refer you to the specialist symptom control or acute pain teams if needed.

It’s important to spend time with family and friends and do things that you enjoy. But you should stay away from people who have symptoms of flu, cold or other infectious illnesses, such as vomiting and diarrhoea. Try to avoid crowded places for the first few months after your CAR T-cell therapy. These include public transport at busy times, shopping centres and cinemas. You should also wear a face covering when out and about in public spaces.

You should continue to have a daily bath or shower, and wash your hands before eating, preparing food and after going to the toilet. It’s important that you continue to keep your mouth clean and use any mouthwashes that have been prescribed for you. It may take a few weeks before your sense of taste returns to normal. 

Tell your dentist that you have had CAR-T-cell therapy before having any dental treatment. They can check for signs of infection.

Your hair will start to grow back a few weeks after leaving hospital. The colour and texture may be slightly different, and it will be ‘baby fine’ in the first couple of weeks. Use gentle shampoo and massage your scalp when you bathe to help stimulate your hair follicles. 

Your skin may have become more sensitive and it may be slightly drier than normal. Try to use mild, unperfumed body washes and moisturisers. If you develop any rashes, please contact us for advice. 

Your skin will be more sensitive to the sun and your risk of sunburn will be higher. Use a sun cream with a sun protection factor (SPF) of at least 30, and cover up with clothing if you are out in hot sun.

Your treatment does not stop you from having sex. Generally, you can resume your usual sexual activity when you are ready, as long as you maintain good hygiene and avoid the risk of STIs (sexually transmitted infections). Before going home, check with your doctor if there may be any reason why you can’t go back to your usual sex life. They may advise that you and your partner avoid oral, genital or anal sex if your blood counts are low. This is to reduce your risk of infections or bleeding. 

You should use two forms of contraception for 12 months after CAR T-cell therapy. Talk to your doctor, CNS or keyworker if you need advice about contraception or if you are thinking about starting a family. They will advise you about a safe pregnancy or conception. 

It is normal to have a low sex drive after treatment. This may be because of changes in your body image, physical appearance and general tiredness. Talk to your partner about how you feel. There are different ways of showing your love and affection for someone, even if you don’t feel like having sex.

When you can go back to work will depend on your recovery and the job you have. As a rough guide you should be able to return to work about six months after your CAR T-cell therapy. You may be able to go back to work sooner if you can work from home, have a sitting or desk job, or if you can start on a part-time basis. Talk with your doctor, CNS or keyworker about returning to work, or if you have concerns about risks within your workplace. 

It’s a good idea to talk to your employer about returning to work, and to decide if you want them to tell the others about your treatment. We can provide or help with any medical certificates you may need to cover this time off. 

Due to the potential risk of delayed neurotoxicity (brain irritation), you should not drive or operate heavy machinery for two months after your CAR T-cell therapy. Talk to your CNS or keyworker if you have any questions about this. You may also need to contact DVLA for further advice. 

As your immune system recovers and the time between hospital visits gets longer, you might think about going on holiday. There are no set rules about travel. But you should be cautious about travelling abroad especially in the early months of your recovery. 

Talk to your doctor, CNS or keyworker if you are thinking about booking a holiday. It may be helpful to take a letter from your doctor explaining your medical history and including contact numbers for your hospital. You should also have the right travel insurance for your trip.

After CAR T-cell therapy you should have your flu and COVID vaccines in line with current guidance. Your family members and those you have a regular contact with should also get vaccinated in line with current guidance. This will help to reduce your risk of getting these infections. 

Please be aware that vaccines may be less effective for you because the CAR T-cell therapy has affected the way your immune system works. If you are due any vaccinations, you should wait at least three months after receiving your CAR T-cells. The vaccinations will be more likely to work after this time. 

We will give you advice about other vaccinations you may need after the CAR T-cell therapy. It’s important that you do not have any live vaccines until you have spoken to your healthcare team. 

Contact your CNS, keyworker or doctor if you notice any of the following:

• Enlarged lymph nodes
• Drenching night sweat
• Unexplained weight loss
• Worsening fatigue
• Shortness of breath
• A rash
• Loose, watery poo (diarrhoea)
• Persistent or unexplained pain.

We know that you may be worried about relapse but there may be many other reasons why you experience these symptoms, such as infections, injuries or hormonal changes.

If you feel that anxiety around relapse is holding you back from your daily activities, or it is impacting on your recovery, speak to your CNS, keyworker or doctor. They will investigate your symptoms and also provide reassurance where needed.

The Macmillan Support and Information Service offers advice, support, and information to anyone affected by cancer or a blood condition. You can drop in any time between 9am and 4.45pm, Monday to Friday, or call 020 3447 8663.

PALS is a patient-friendly, easy-to-access service designed to provide a personal contact point to assist patients, relatives and carers. If you have a problem that you have not been able to resolve, PALS can help you. 

The University College Hospital PALS office is located on the ground floor of the main hospital building and is open from 9am to 4pm, Monday to Friday.

Telephone: 020 3447 3042

Email: uclh.PALS@nhs.net

For non-urgent issues between 9am and 5pm Monday to Friday, please call:

• the CAR T-cell trials team on 020 3447 2528
• haematology helpline (if you are not a trial patient) on 020 3447 7359.

Out of hours for urgent medical advice: 07852 220 900

Macmillan Cancer Support

• Tel: 0808 808 00 00
• Website: macmillan.org.uk

Lymphoma Action

• Tel: 0808 808 5555
• Website: lymphoma-action.org.uk

Coping with fatigue

• Tiredness (fatigue): Tiredness (fatigue) and cancer | Macmillan Cancer Support
• Your fatigue diary: MAC11664_E09_Diary_Fatigue_p03_20230914_KP_low_res

Leukaemia Care

• Tel: 08088 010 444
• Website: leukaemiacare.org.uk

Blood Cancer UK

• Tel: 0808 2080 888
• Website: bloodcancer.org.uk

Myeloma UK

• Tel: 0800 980 3332
• Website: myeloma.org.uk

University College London Hospitals NHS Foundation Trust cannot accept responsibility for information provided by external organisations.