Discharge advice following CAR-T cell therapy

Introduction

This leaflet explains what you can expect during recovery from your CAR T-cell therapy. If you have any questions or worries about your recovery or about information included in this booklet, please speak to the team looking after you. Your clinical nurse specialist (CNS) will still be your first point of contact. Or, if you had your CAR T-cell therapy as part of a clinical trial, it will be your trials team practitioner.

Although you are well enough to go home there are still certain precautions to take and things to be aware of. Before you go home, you will have a discharge talk with your CAR-T Clinical Nurse Specialist (CNS). This will give you the opportunity to ask any questions you have and identify any extra support you or your family might need. They will also remind you of the contact details for advice and general information.

Leaving hospital may fill you with mixed feelings. You may be excited about going home but you may also feel nervous about coping at home and thinking how successful the treatment has been. These feelings are all normal and your team will support you if you have any problems or concerns.

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 CUH team and your local hospital team.

Information for patients, relatives and care givers

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 moving around independently, or the appropriate support is in place
• You are informed about follow-up care and anything you need to watch out for when you get home

You will need to remain close (less than a two hour drive) to Cambridge University Hospital, Addenbrooke’s for at least 4 weeks following your treatment with CAR-T cells. If you live more than two hours’ drive away, we will arrange accommodation closer to the hospital for a few weeks at no cost to you.

You will also need to always have someone with you. You should not be left alone at any time of the day or night for at least the first 28 days following CAR-T cell infusion, as there is a potential risk that you could develop neurological toxicity during that time. This person will need to be able to act on your behalf and drive you to Addenbrooke’s Hospital if necessary.

You must not drive for 8 weeks after receiving your infusion. . If you experienced a seizure during your treatment with CAR-T cells, then you must not drive subsequently until advised to do so by a neurologist. Your insurance will be unlikely to cover you if you have been advised against driving.

You will be provided with a CAR-T product specific alert card: please ensure you present this if you need to go to hospital for any reason.

Cytokine Release Syndrome (CRS) and Neurological Adverse Reactions are side effects of your infusion that may occur after your discharge and may require readmission to the hospital to treat your symptoms. These symptoms are reversible with treatment.

In the weeks after CAR-T treatment, it is important to continue to look for side effects and be mindful of your health and wellbeing and contact the team in the event of experiencing the following:

• Any neurological symptoms such as confusion, agitation, drowsiness, difficulty in finding words, talking, or writing
• A temperature over 38°C, or two temperatures over 37.5°C more than 2 hours apart.
• Symptoms of a ‘cold’ – runny nose, sore throat, blocked sinuses, cough
• Abnormal bruising or bleeding
• Difficulty in breathing
• Dizziness or drowsiness
• New diarrhoea or vomiting
• Persistent headaches

Temperature

The most common serious side effect after you are discharged from hospital is infection. You should contact the team via the 24-hour telephone line if you have symptoms of infection, even if you feel they may be mild. We would advise you to check your temperature once or twice a day and contact the team if you have a temperature over 38 degrees, or two temperatures over 37.5 degrees more than 2 hours apart.

Although your immune system is recovering, you are still vulnerable to infection. We encourage you to go outside for walks but initially to avoid busy or crowded places such as shops, restaurants, cinemas etc., and to make sure you wash your hands thoroughly when returning home. It is important for you to continue to report symptoms of infection for the longer term to your local team.

If you were to have symptoms of an infection, you should make sure that you are treated without delay. If you are infected with COVID then you should make sure that you are treated with specific anti-COVID medications regardless of how long it is since you received your CAR-T cells, unless specifically advised otherwise by your CAR-T treating team.

Neurological symptoms

Rarely ICANS, the neurological side effects of CAR-T cell infusion, can occur many weeks after discharge. If they do occur, they may be serious so it is very important to educate the family or friends you have caring for you about this before you go home. It is important that you or they report any of the following symptoms urgently to your local team:

• Confusion, disorientation, hallucinations
• Difficulty/changes in speaking
• Loss of memory
• Shakiness
• Loss of co-ordination
• Reduced consciousness
• Somnolence (feeling sleepy or drowsy)
• Agitation
• Seizures
• Involuntary muscle movements

Low blood counts

CAR T-cell therapy can lower your blood counts. These can include red blood cells, white blood cells and platelets. If replacements are needed, you may be asked to attend for transfusions. These may be delivered on the Haematology Day Unit, or at your local hospital. GCSF (granulocyte colony-stimulating factor) injections, also known as growth factor injections, are used to boost blood cell counts, the team will let you know the arrangements if you need any of those treatments. If you experience abnormal bruising or bleeding, you must tell the team immediately using the 24-hour telephone line.

B-cell aplasia

Normal B cells are also part of the immune system and produce antibodies against infections. CAR-T cells reduce the number of B-cells in your body. This will affect your ability to fight infections. You may require replacement of antibodies (known as immunoglobulins) after receiving CAR-T cells to restore your immune system. If you need immunoglobulin replacement, your doctor will refer you to the immunology department who will make arrangements for this to start.

Immunoglobulin replacement usually starts with intravenous infusions, but with time this can be given at home as injections under the skin. Some people who have had CAR-T cells may require this for many months, and sometimes years, after treatment.

Central venous catheter 'line'

If you go home with your PICC line still in, the aim is to remove this as soon as it is possible and safe to do so. Some people may need to keep their line in longer if they require blood or platelet transfusions, or if they require further treatment for their underlying condition.

The line needs to be flushed and dressed weekly until it is removed. Please ensure line care is booked either in Addenbrooke’s or at your local hospital.

Please monitor for any redness/pain/swelling/leaking around the site of the line. Speak to your local team if you notice any of these symptoms.

Medications

It is important to continue to take your prescribed medications on discharge to keep you well. The ward nurses will discuss these tablets with you before you are discharged home.

You will be given a copy of all the medications that you should take after being discharged. It is useful to bring this list with you to ongoing clinic appointments or when you attend hospital for any reason.

It is important to stay organised with your medications and when running low order these with plenty of time so that you do not miss any doses. Your haematologist will arrange the initial prescriptions of medicines related to your CAR-T therapy following your clinic appointments. Any medications you are taking for unrelated conditions should continue to be prescribed by your GP.

Following CAR-T therapy, patients often require an antiviral tablet (e.g. aciclovir) and preventative antibiotic (e.g. co-trimoxazole). Your haematologist will monitor the recovery of your immune system, and may stop these in the future. However, patients usually need to take them for at least twelve months, and often longer.

If your neutrophil count is low, we may give you injections of G-CSF (granulocyte colony stimulating factor) to administer at home to boost white blood cell counts.

Your team will tell you how often, and for how long, to take these injections, and will monitor your neutrophil count to see how you are responding. Occasionally people need G-CSF injections for many months after CAR-T treatment.

Please note that you should only stop taking the medicines listed above when directed by your healthcare team.

If you run out of any tablets you are taking before your follow-up appointment, contact your GP who will be able to provide you with a repeat prescription.

Vaccinations

National guidance recommends that patients have a new primary vaccination course against Covid-19, starting 6 months following CAR-T therapy. We recommend that your family members and those you have regular contact with are also fully vaccinated in line with current guidance. This will help to reduce your risk of getting infections.

You should have your annual seasonal influenza vaccine when it is offered.

We will contact you and your GP at six months following CAR-T treatment to recommend you receive vaccinations against childhood and other 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. It’s important that you don’t have any live vaccines until you have spoken to your healthcare team.

Nutrition

Any eating problems (dry mouth, changes in taste and reduced appetite) that you have had whilst in hospital may persist when you go home. It may take a few months before your appetite is back to normal. Even if your appetite has not recovered, try to eat regular meals/snacks when you get home to help build up your strength.

Your team 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.

Try to eat a well-balanced diet and drink at least 2-3 litres of fluid a day. Avoid possible risks of infection from food. Always make sure you eat foods within their ‘use by’ dates, don’t reheat foods, and cook in clean surroundings with clean hands. Wash salads and fruits thoroughly. If going out to eat or getting a takeaway, make sure you use places that you are confident have clean practices and where the food is freshly cooked.

You should avoid excessive alcohol consumption as your tolerance will be reduced, and some of the drugs you are on may interact with alcohol. Please discuss this with your doctor if you have any questions on this.

Fatigue

You will still feel tired and fatigued when you go home. Fatigue is a common side effect following CAR T-cell therapy and can take several months to improve. This is a normal part of recovery. Try to pace yourself and keep moving as you are able. Listen to your body and if you need to rest then do so. Consider breaking down daily tasks into small achievable tasks spread over the day.

Your energy levels will fluctuate, so try not to overdo it on days when you have more energy. This may feel difficult but it will help to reduce your fatigue and improve your wellbeing.

If you are worried that your fatigue is not improving after several months, speak to your healthcare team.

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.

It is common for your fitness and strength to decline during your hospital stay and treatment, especially if you were very unwell. 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.

Sexual activity

Resuming sexual contact depends on how you feel. 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 (i.e. low blood counts).

Changes in your body image related to hair loss, skin changes, changes in weight, can all affect how you are feeling in relation to intimacy and sexual contact. Talk to your partner about how you feel. If you are experiencing any of these problems, please speak to a member of the team for advice and support.

Contraception

Most chemotherapy, including that given before CAR-T cell therapy, can adversely affect your fertility. However, this may only be a moderate effect, and you should assume that your fertility has not been affected unless proven otherwise. A reliable form of contraception should be used for 12 months after CAR T-cell therapy. Talk to your doctor, or CNS 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.

Return to work and travel

Going back to work depends on the speed of your recovery and what your job involves. As a guide you should think about being off work for at least 6 months after your CAR-T therapy treatment. This may be longer 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 can discuss your return to work with your doctor. We often suggest going back to work part time at first so that it is easier to adjust. Try to let your employer know how you are recovering as things progress and be realistic about going back to work and honest with them. We can offer help and support to talk to your employer if required.

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. Ensure you have adequate travel insurance for your trip. It is important to be clear with insurers about your previous medical history so that your insurance is valid.

Appointments

For the first few weeks after discharge, we will review you at least once a week in our outpatient clinic or more often if required. The frequency will reduce as your blood counts recover and stabilise. Please bring a list of all your current medications with you to all reviews.

The CUH team will review you at 3, 6, and 12 months. Some of these appointments may be by video call or telephone.

You will require PET-CT scans to assess your response to treatment at 1 month and 3 months after having your CAR-T treatment. Some patients may need further PET-CT scans. You will also need to have blood tests to monitor your immune system recover at 1 month, 3 months, 6 months and 1 year following treatment. Some people will require other blood tests during this time.

After 1 to 3 months following CAR-T cell therapy your care will be returned to your usual haematologist, although your care will continue to be shared with Cambridge in the long-term.

Support after treatment

Having CAR-T treatment can be emotionally draining, and it can be a very stressful time for both you and your family. Going home can be difficult – you may feel very excited as it is a huge achievement; but you can also feel apprehensive about leaving and monitoring your own health at home. Some people find it challenging to adjust from a busy schedule of hospital appointments to less regular contact with their healthcare team.

The physical and psychological impact of your treatment on you and your family is easy to underestimate and recovery can often feel frustratingly slow.

Please talk with your CNS or doctor about how you are feeling, as we are here to support both you and your family. 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.

CAR T-cell therapy is a novel treatment, and you 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 doctor if you would like to find out about our patient support groups or to get in touch with others who have been through similar treatment

Other important tips

Always carry your Patient Alert Card with you and inform all healthcare providers

Do not drive or use machinery for 8 weeks after the CAR-T cell infusion, or until your cell therapy team says is safe to do so.

• After CAR-T cell therapy if you need a blood transfusion you should have irradiated blood products, unless in an emergency.

You will not be able to donate blood or organs in the future

• Try to avoid swimming or any activities that might involve the generation of large amounts of dust as this can cause chest infections for the first 3 months after your treatment. Discuss this with your consultant if this will be problematic.
• Contact and stroking your pets is fine but please make sure you wash your hands afterwards and avoid, for example, picking up faeces etc.
• Your skin will be very sensitive to the sun so please use a minimum of factor 30 sunscreen when outside during the day. Use a hat and cover up/stay in the shade where possible.
• Your hair will start to grow back a few weeks after leaving hospital.
• Please do not book any holidays abroad for the first 3 months as you will need to be closely monitored by your local hospital team during this time.
• Continue to watch for side-effects or symptoms that may occur and tell your cell therapy immediately

Useful Contact Numbers

If you have any problems or just want to talk to someone, please don’t hesitate to call the CAR-T / BMT team on one of the numbers below. There is always someone here that will be pleased to speak to you.

For non-urgent matters, please use the CAR-T CNS Team number as the first point of contact.

If you are unwell at other times, you should contact the Acute Oncology Service (AOS) emergency phone. Be sure to let them know you have had CAR-T cell treatment.

If you have a life-threatening condition then you should call 999.

• CAR-T CNS Team - 01223 274669 - Weekdays 8-6 pm (for any non-urgent questions or queries)
• Office CAR-T/ BMT 01223 217224/ 01223 596239 Weekdays 8-5 pm (for any non-urgent questions or queries)
• Acute Oncology / Haematology Service (24 hour emergency phone)- 01223 274225 24/7 for any urgent clinical concerns

Privacy and dignity

Same sex bays and bathrooms are offered in all wards except critical care and theatre recovery areas where the use of high-tech equipment and / or specialist one to one care is required.