Recovery following CAR T-cell therapy

Your recovery period following CAR T-cell therapy may be different to someone else’s, but generally it takes a number of 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 normalised before you go home. How often you will need blood tests after that will depend on your results at the time. Some people need bloods once or twice a week to begin with, but you may not need them this often.

Your PICC will need to stay in place until your blood counts are stable (please see the next section ‘Blood count support’ for more information). 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 (see page 10 for contact details).

For more information about PICCs, ask for a copy of our leaflet, Peripherally inserted central catheters (PICCs) or visit our website: uclh.nhs.uk/cva

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 and other tests, such as bone marrow biopsies or CT scans, will be listed in your trial schedule. 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 your levels of:

• Red blood cells, which carry oxygen around the body
• Neutrophils (a type of white blood cells), which help to fight infection
• 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. And GCSF (granulocyte colony-stimulating factor) injections, also known as growth factor injections are used to boost white blood cell counts. 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 any treatment you may need and tell you where your treatments will take place – either in your local hospital or at UCLH.

Very rarely, GCSF can cause your 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.

Please note that if you need blood transfusions after CAR T-cell therapy you will need a special type of blood called ‘irradiated blood’. Irradiated blood is blood that has been treated with radiation to prevent associated graft-versus-host disease. We will give you more information about irradiated blood and answer any questions you may have. We will also give you a card that says you need irradiated blood. As you will continue to need irradiated blood for the rest of your life, it’s important that you carry this card with you at all times. 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:

• Aciclovir – this is an anti-viral medicine that helps to prevent certain viral infections, such as shingles.
• Levetiracetam – this medicine helps to reduce the potential side effects that can occur as a result of neurotoxicity (irritation of the brain caused by the CAR T-cells). Levetiracetam is usually reduced gradually and stopped soon after discharge. Please note that not all patients undergoing CAR T-cell therapy need to take this medicine.
• Pneumocystis pneumonia (PCP) prophylaxis – this is to protect you from infections affecting the lungs. You will have nebulised pentamidine (pentamidine that is inhaled via a nebuliser) for eight weeks from admission to hospital. After this time, most patients can take oral medication instead, depending on their blood test results.
• Lansoprazole (or a similar medicine) – this medicine is to help prevent stress ulcers in your stomach, reflux and mucositis (inflammation and soreness in your mouth or gut lining).
• Lansoprazole is usually stopped on or before discharge as long as all stomach issues or mucositis have resolved.
• Itraconazole – this medicine helps to prevent fungal infections and may be stopped before discharge if blood counts allow. You may need to start taking itraconazole again if your neutrophil levels are repeatedly low.

Please note that 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 and 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 who will be able to provide you with a repeat prescription.

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/weakness.

These may be symptoms of delayed or recurrent neurotoxicity. This is very rare but if you experience any of these symptoms, contact us immediately. 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 experience nausea, vomiting or diarrhoea that you can’t control with medication.
• You are unusually short of breath either when at rest or on exertion.

It’s normal for your appetite to be affected after CAR T-cell therapy. Nausea 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 a necessary part of 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 possible 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, don’t reheat foods, and cook in clean surroundings with clean hands.
• Make sure meat, fish, shellfish, poultry and eggs are thoroughly cooked before eating them.
• Wash salads and fruits thoroughly.
• If going out to eat or getting a takeaway, make sure you use places you are confident have clean practices and where the food is freshly cooked.
• Drink two to three litres of fluid per day (it may be more in summer). You will know if you are not drinking enough as your urine (pee) will appear 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 the medicines you may be taking.

Fatigue is a common side effect following CAR T-cell therapy and can take a number of months to improve. Fatigue is more than feeling tired and won’t 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 different tasks and activities.
• Plan for the day and prioritise the things that are most important or that you enjoy.
• Keeping a diary of your energy levels and activities may help you to understand what you are able to do and see progress. You could try an NHS-recommended phone app, such as Untire. Visit untire.me/en for more information. You could also try an online tool to manage fatigue called RESTORE at macmillanrestore.org.uk
• Don’t forget to ask for help with tasks if you need it.

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

If you are struggling to manage your day-to-day activities due to your fatigue, 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; consider having a warm bath, gently stretching or reading.
• 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 and we suggest that you 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, located on the ground floor of the Cancer Centre. See page 9 for more details, or ask your CNS or keyworker.

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 at first so try to avoid being too inactive or sedentary 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 your day.

Gentle aerobic exercise, such as walking, can be a good way to start building up activity or exercise. Ask a friend or family member to join you while you build up confidence. A pedometer or step counting app on your phone can be a good way to monitor your activity and record your progress as you move more each day. Making 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:

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

If you feel 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, and 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 and 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 and it might feel that other people don’t understand what you have been through or can’t relate to your experience. Speak to your CNS or keyworker if you would like to find out about any 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. But please remember that your CNS, keyworker and doctors will still be available if you want to discuss these feelings or anything else that worries you. It may reassure you that having fewer hospital appointments is a sign that you may be ready to start 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 find that you are feeling constantly low or unable to enjoy the things you usually would some weeks or months after your treatment has finished, 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 doesn’t 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, or other coping mechanisms, 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 get in touch with your CNS or keyworker who can 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 that you may have had following 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. However, you should stay away from people who have symptoms of flu, cold or other infectious illnesses, such as vomiting and diarrhoea. For the first few months after your CAR T-cell therapy, try to avoid crowded places, such as public transport at busy times, shopping centres or 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. You may find that it takes a few weeks before your sense of taste returns to normal.

Remember to tell your dentist that you have had CAR-T-cell therapy before having any dental treatment so that they continue to look out for signs of infection.

Your hair will start to grow back a few weeks after leaving hospital. The colour and/or 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 so try to use mild, unperfumed body washes and moisturisers. If you develop any rashes, please contact us for advice.

After CAR T-cell therapy, 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 for a long time.

Your treatment does not stop you from being able to have sex. Generally it’s okay to resume your usual sexual activity when you are ready as long as you maintain good hygiene and don’t put yourself at risk of STIs (sexually transmitted infections). However, check with your doctor before going home 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 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 be able to advise you about a safe pregnancy or conception. It is normal to have a low sex drive after treatment. Your sex life can be affected by changes in your body image, physical appearance and general tiredness following treatment. 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 type of work that you do. 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 are able to start back on a part-time basis. Talk with your doctor, CNS or keyworker about when you may be able to return to work, or if you have concerns about any risks within your work or workplace.

It’s a good idea to talk to your employer about returning to work, and to think about whether you want them to tell other people 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, 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 we advise you to 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 adequate travel insurance for your trip.

After CAR T-cell therapy you should have your flu and COVID vaccines in line with current guidance. We recommend that your family members and those you have a regular contact with are also fully 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. This is because 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 don’t 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
• 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 impacting on your recovery, speak to your CNS, keyworker or doctor. They will be able to investigate any symptoms you have and also provide reassurance where needed.

The Macmillan Support and Information Service is based on the ground floor of the University College Hospital Macmillan Cancer Centre. It provides a relaxed and informal space where patients, their families and friends can ask questions and talk through their concerns with specialist staff. The team offers support at any stage of patient care – from diagnosis, throughout treatment and beyond.

You can access a range of information resources, including leaflets and booklets. You can also be referred to other services such as complementary therapy; wig and scarf tying advice; diet and nutrition advice; welfare and benefits; and psychological care and counselling.
You don’t need an appointment to visit and the team will see you as quickly as possible.

• Opening hours: 9.30am to 4.45pm, Monday to Friday
• Telephone: 020 3447 8663
• Email: uclh.supportandinformation@nhs.net
• Website: uclh.nhs.uk/msis

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

• Untire: untire.me/en
• RESTORE: macmillanrestore.org.uk

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.

• Anthony Nolan (2015). The Seven Steps
• Anthony Nolan (2018). Managing Fatigue
• Macmillan. Recovering after high-dose treatment with stem cell support National Health Service (2019)
• How to get to sleep UCLH (2021). Recovery after an autologous stem cell transplant