- General aspects of IECs
- Before treatment commences
- Going home
- Useful addresses and telephone numbers
This information booklet aims to explain aspects of Immune Effector Cell therapies (IECs). These are complex treatments, and so that you can make an informed decision about them, we have tried to make the information as clear as possible. However, every IEC is different, and so the risks and side effects discussed will not apply to all patients. If you have questions when you are reading this booklet, you might find it helpful to list them in the space provided at the back so you can discuss them either at your next outpatient appointment or by contacting the Blood and Marrow Transplant (BMT) and IEC coordinators.
The treatment offered to you will be based on National Institute of Clinical Excellence recommendations for specific diagnoses. IECs may also be offered to you as part of a clinical trial; if this is the case, you will receive further information that is specific to the trial.
Why do I need an IEC therapy?
The reason for considering an IEC therapy depends upon your type of cancer. These therapies may help induce a remission, prevent a relapse or prolong a stable phase of your disease.
As well as considering the different treatment options you might have, your doctors will also consider your age and your general health when deciding whether or not to recommend IEC therapy. This is because preparing for, receiving and recovering from IEC therapies can be very demanding, both physically and psychologically.
What are IEC therapies?
Immune effector cells are novel therapies that involve using your body’s own immune system to treat your cancer. Immune effector cells are cells from the human body that are capable of effecting or enhancing an immune response. These are collected from the human body (harvested) so they can be transformed into a therapeutic product which is then administered to you.
At Cambridge University Hospitals we currently use two types of immune effector cells:
- Chimeric antigen receptor T cells (CAR-T)
- Tumour infiltrating lymphocytes (TILs)
How it works
The immune system is made up of specific cells and organs that protect your body by recognising and disposing of infection, disease and abnormal cancer cells.
CAR-T cell therapies
CAR-T cell therapy uses your body’s own T cells, which are an important part of your immune system that help to attack cancer cells. The T cells are collected from your blood and then sent to a laboratory, where they are genetically programmed to produce specific receptors called chimeric antigen receptors (CARs). These CARs target the T cells to a particular type of cancer. The resulting CAR-T cells are specific for your cancer, and in the laboratory they are grown into large numbers of cells. These can then be returned to your body through a central venous access device, such as a Hickman line, with the aim that they will be able to find and destroy cancer cells.
Tumour infiltrating lymphocytes (TILs) are cells from the immune system that have left the bloodstream and migrated into your tumour in order to attack it. In TIL therapies, a sample of your own tumour is taken and sent to a laboratory that isolates and grows these cells into large numbers, developing them into a product which we then return to your body through a central venous access device, such as a Hickman line. The aim is that the large numbers of TILs will be able to recognise and attack your tumour.
What happens before you receive the treatment?
The preparation for each therapy varies, and the following is only a summary. Please ask your treating team to explain the specific plan to ensure you are fully informed of all the steps required for the treatment.
You will attend an outpatient clinic appointment with your treating team. There you will meet a speciality consultant and specialist nurse, who will discuss the treatment options that are available to you, what each option involves and what you may expect from each option. They will also explain the complete process, the risks of IEC treatment and the alternatives, and will go through any worries you have.
If a CAR-T cell or TIL therapy is a possibility, there are a variety of blood tests and investigations that you will be required to undergo prior to the doctor confirming your suitability. The combination of tests will include some or all of:
- Blood tests
- Viral infection screening
- Heart function tests
- Lung function tests
- Kidney function tests
- X-rays and scans such as CT or PET-CT scans
Prior to admission to hospital
If you are receiving CAR-T cell therapies you will first visit the apheresis team in ward E10 of Addenbrooke’s hospital. There the team will use an apheresis machine to collect your T cells. This machine removes some of your blood via a needle in one arm and, after separating out certain needed blood cell components, returns the rest of the blood into your other arm. If the veins in your arm are not very large, sometimes a central venous access device ‘line’ can be used to help the process.
After the required T cells are collected, they are sent to a laboratory to be developed into a CAR-T cell product.
The laboratory is usually away from Cambridge, and this process can take a few weeks. In the meantime, you may receive chemotherapy or radiotherapy for your cancer.
If you are receiving TIL therapies you will need to first attend for a surgical procedure to remove some of your tumour tissue. Depending on the site of the tumour, the surgery will be performed at Addenbrooke’s or another specialist hospital such the Royal Papworth hospital. These arrangements will be explained to you by your treatment team.
After the tissue sample is collected, it will be sent to a laboratory to be developed into a TIL product. The laboratory is usually away from Cambridge, and this process can take a few weeks. In the meantime, you may receive chemotherapy or radiotherapy for your cancer.
Most IECs have been shown to work more effectively if they are infused after a patient has been given specific treatment that reduces their existing immunity. This often involves chemotherapy drugs, such as fludarabine and cyclophosphamide, which ‘makes space’ in a patient’s immune system that then encourages the IECs to expand and grow in the body. Patients who have been treated with fludarabine or similar drugs, and then go on to need blood transfusion should have blood that has been specially prepared by being irradiated. Your treating team will give you printed information about this, along with a card to carry as a reminder.
The infusion of IECs
When your immune effector cells are ready, and have returned to Addenbrooke’s you will be admitted to Addenbrooke’s ward C10, the cellular therapy unit to start your treatment. Your treatment team will give you a provisional admission date. We will aim to admit you as close to your estimated date as possible, and will keep you informed of any change in dates.
Your cells will be infused back into your body in a process similar to a blood transfusion. Your team of doctors and nurses will monitor you closely. You will receive medications to help prevent and control side effects.
What will happen after the IECs have been infused?
Your response will depend on the cancer type, location, treatment doses, and your overall health. You will need to stay in or close to the hospital for a few days or even several weeks, depending on your clinical situation, until the risk for severe side effects is diminished.
With currently available CAR-T cell therapies, there is a small but significant risk of late onset of neurological problems including confusion and disorientation. Because of this, patients receiving CAR-T therapies will need to remain within an hour of Addenbrooke’s hospital at all times for the first four weeks after CAR-T cell infusion Patients who have received CAR-T cell therapy should not drive for eight weeks after the CAR-T cell infusion.
What are the risks of IEC therapies?
Although IECs may offer a greater chance of controlling or curing your cancer, these complex treatments also carry some risks.
Typically, any side effects will resolve with treatment in a matter of days or weeks.
The risks involved relate to:
- Infection: While your bone marrow recovers from any chemotherapy used to prepare you for IECs, the numbers of immune cells in your blood will be low and you will be at an increased risk of infection. Although we have many different antibiotics available to fight infection, on rare occasions an infection might not respond to the treatment. After some CAR-T cell therapies, the counts of immune cells such as neutrophils in your blood can remain low for weeks or months.
- Side effects of higher doses of chemotherapy including damage to organs such as the lungs or heart.
- Cytokine release syndrome: In some patients, the immune system may become activated as the CAR-T cells travel through the body, recognise their targets and initiate an immune response. Substances called cytokines are released into the system. This can make you feel like you have the ‘flu, with a high fever and/ or chills. Other symptoms that may occur include low blood pressure, difficulty breathing, or confusion. These symptoms range from mild to severe. Your team will monitor you frequently to help control these problems. You may need oxygen, intravenous fluids, and / or medicines (including steroids) to keep your fever down. In more severe cases, you may receive medicines designed to stop the effect of the cytokines, or require support in the intensive care unit until the immune activation has reduced.
- Brain and nerve problems: In some patients, the immune activation after CAR T-cell infusion may alter the brain and neurologic system. These changes can present as confusion, difficulty with speech or memory, or even in severe cases loss of consciousness. Your team will monitor you frequently and may give you special medications to help prevent or control these problems.
- Tumour Lysis Syndrome: IEC therapies are designed to target your cancer cells. In some cases, this process may destroy a large amount of tumour. When these cancer cells die, the contents of the cells are released into your bloodstream. This can result in abnormal levels of different minerals and salts in the blood, and can sometimes cause kidney damage. Your team will have a specific treatment plan for you, if needed. This may include chemotherapy prior to T cell therapy, IV fluids, and / or medicines to help the body clear these excess salts and protect the kidneys.
- Relapse: Despite the powerful effects of IECs, unfortunately they are not a guaranteed cure: some patients will not respond, or will relapse after an initial response to IECs.
Information you may find helpful for admission
Visiting times on ward C10, the cellular therapy unit, are between 8am and 10pm, except between 12pm and 2pm each day, which is during patients’ rest time. Due to infection risks to our patients, children below the age of 12 are not allowed to visit on C10 unless under exceptional circumstances. Please discuss with the ward manager if you have any concerns.
People who have been in contact with chicken pox, measles or who have colds, ‘flu or any other symptoms of a transmissible infection must not visit. If there are any doubts about visitors, please discuss it with the ward team before visiting.
All visitors must use the alcohol hand rubs provided or wash their hands in the basins provided before entering single rooms.
What to expect during your hospital stay
When you are admitted for your IEC therapy you should expect to be in hospital for three to four weeks. As noted above, patients receiving CAR T therapies will need to remain within an hour of Addenbrooke’s hospital at all times for the first four weeks after CAR-T cell infusion.
Parking can be a major problem around the hospital site. Charges are made for parking and this can become a significant expense for our regular visitors. Provisions can be made to reduce the cost. The ward clerk on ward C10 will be able to tell you more about this. There are regular bus services to Addenbrooke’s from most local areas. Details of these are available from the main hospital reception.
There are various shops situated on the ground floor of Addenbrooke’s hospital, as well as a Barclays Bank situated in the main concourse. Newspaper sellers also attend the ward daily.
Most patients are well enough to get up and dressed each day. Therefore we suggest you bring some comfortable day clothes to wear. You will also need a few changes of nightclothes. Unfortunately the ward cannot offer laundry facilities; however, towels and nightclothes are available from the hospital laundry.
Although much of your day may be taken up with medical and nursing procedures, there will be times when you are bored and frustrated. Although it can often be difficult to concentrate for long periods of time during the treatment, you may wish to bring in with you some magazines or DVDs that will help you pass the time.
Unfortunately, fresh flowers and pot plants are not permitted on the unit as they may increase the risk of patients getting an infection.
Addenbrooke’s hospital does not permit smoking on the hospital site. If this is difficult, your treating team may be able to advise about treatments to assist with smoking cessation.
Looking after yourself during your admission
We cannot predict which side effects you will experience or how serious they will be. There are medications we can give to try and relieve the symptoms. It is important that you tell us how you are feeling. In this way, you can help us to care for you. There are also many ways in which you can help yourself.
Lying in bed for long periods can increase your risk of developing chest and urinary tract infections. If you are active you will be able to participate in your own care. It is very easy in hospital to feel that your life has been ‘taken over’ by your disease and nursing / medical staff. This can make you feel helpless and frustrated. Keeping active by getting up and dressing in day clothes each day and participating in your own care can give you back some control over your daily routine.
This involves being particularly careful about hygiene measures you probably already take, such as showering daily, changing clothes (day and night) daily, wearing slippers / shoes when out of bed and thoroughly washing and drying hands before eating, touching your central line, doing your mouth care, or after using the toilet / commode
It is important to be as well-nourished as possible during your treatment. The chemotherapy and treatment may cause altered taste, reduced amount of saliva, nausea, vomiting and / or mucositis, all of which can make it difficult for you to eat. If you are worried about this, please let a member of the cell therapy team know. If needed, the dietician will come and see you and advise you appropriately about high protein / high calorie foods and nutritional supplements that may be used.
Mucositis, inflammation and ulceration of the lining of the mouth, and less commonly the gut, will lead to pain and discomfort and causes susceptibility to infection. Good mouth care helps to keep your mouth clean, moist and comfortable and may help reduce the risk of developing an infection.
Please inform the nursing team or contact a member of the cell therapy team if you have any of these symptoms in or out of hospital.
You will be prescribed various medications to help prevent infection. The nursing staff will be able to explain the use of each. It is important to take the tablets prescribed to you. If you have any problems taking them or you do not understand the reasons for taking them, please ask one of the cell therapy team.
Patients with cancer are exempt from prescription charges if they would otherwise pay them. If you have not done so previously, ask the clinic staff for a form to register for free prescriptions.
Checking for infection
Some infections cannot be prevented despite all precautions. Any symptoms of infection should be noted and treated promptly.
The medical and nursing staff will be observing you closely every day for signs of infection, for example, raised temperature, pulse and low blood pressure. The condition of your mouth is inspected and regular samples and specimens are taken.
You can help by reporting any symptoms that could suggest an infection for example a sore throat, feeling hot or shivery, a sore central line site, diarrhoea or pain on passing urine.
Returning home following IEC therapy is a very special time for you and your family. It may be both exciting and worrying. Having spent many weeks in hospital most patients feel anxious. Family members may also be concerned about the responsibility of caring for someone without the constant presence of hospital staff. Feeling confident and comfortable at home is a process that takes time. The need for continued precautions in the months following IECs may add stress to your family life.
This is a time of convalescence and recovery. You and your family may expect you to feel and act as you did before the onset of your illness and the beginning of your treatment. This will not happen immediately. It often takes two to three months to recover from the IEC therapy. Many patients have feelings of fatigue and weakness and many also have a decreased appetite. It will take time to regain your strength. Please remember, during this stressful time, you can always telephone and discuss problems or ask any questions you may have. (See contact numbers at end of this booklet).
When you are discharged from hospital, your care will continue on an outpatient basis. An appointment date and time will be given to you prior to discharge from ward C10. The objectives of your clinic visits are:
- Checking your physical and mental well-being.
- Taking and monitoring blood samples.
- Checking for any complications.
- Altering any medication you may be taking.
- An opportunity for you to ask questions.
If you require hospital transport, please speak to nursing staff on C10, the C10 ward clerk, or the outpatient reception desk. To provide hospital transport we usually require 48 to 72 hours’ notice. If you find it difficult to meet the cost of travelling to outpatient appointments, please ask to be referred to a social worker who may be able to help.
If anything is particularly worrying you, or if you have a specific problem, please do not hesitate to discuss this with your specialist nurse. We can only help if you make us aware of the problem.
The frequency of appointments depends on the type of IEC you have received. You may also need to have further platelet and blood transfusions for a short period after discharge from the ward.
If you are unwell at home
If you are discharged from hospital and are unwell, please contact the haematology 24-hour helpline immediately if you have any of the following symptoms:
- Fever 38°C and above
- Diarrhoea or abdominal pain
- Any cough or breathlessness after walking short distances
- Headache which is not responsive to codeine
- Feeling muddled or confused
- Blood in urine or stools
- Symptoms of anaemia
If you have any life altering or limiting symptoms that are not covered in the list above, please still contact the CAU number listed on the following page. They will be happy to help answer your query. The helpline will give you the most appropriate advice for your symptom. This may include medication changes, accessing your GP, attending your local hospital or attending Addenbrooke’s.
If you have a life-threatening complication, please do not hesitate to call 999 emergency ambulance.
If you are admitted to another hospital for any reason, please ask the doctors to inform a member of the cell therapy team.
We hope this booklet has been of help to you. We are aware that the volume of information given may overwhelm you and we encourage you to ask your treatment team any questions you might have concerning this information or your treatment. You will have an opportunity to talk to the team when you attend the outpatient clinic, but if questions occur after your visit we are very happy for you to contact us directly (contact details are listed overleaf).
Useful addresses and telephone numbers
Dedicated haematology helpline phone number 01223 274225
(for urgent enquiries 24 hours a day, 7 days a week)
Ward C10: Nurses line 01223 217255
Ward clerk 01223 217312
Cancer Assessment Unit (CAU) Oncology 01223 274 244
Haematology 01223 274 225
Haematology day unit: Nurses line 01223 217720
Oncology day unit: Nurses line 01223 217099
Department of clinical oncology:
Appointments desk 01223 216551
Specialist nurse team 01223 217224
Macmillan Cancer Support
Support line: 0808 808 00 00
Macmillan’s Inclusion team helps understand how cancer care and support can vary for different groups of people. They produce independent, expert, up-to-date information to meet the information needs of people affected by cancer. The service is free and confidential and is open Monday to Friday 9.00am to 8.00pm.
17 Britannia Street
London WC1X 9JN
Tel: 0171 833 2451
Offers support and information on all aspects of cancer in response to telephone and letter enquiries. Acts as a resource to over 370 cancer support and self-help groups throughout the UK and publishes a range of publications on issues about cancer.
Cancer Care Society
21 Zetland Road
Bristol BS6 7AH
Tel: 01272 427419 / 01272 232302
Offers emotional support and practical help where possible through support groups around the country. Telephone and one-to-one counselling, telephone link service, holiday accommodation and information on other charities and cancer-related organisations.
Cancer Relief Macmillan Fund
15-19 Britten Street
London SW3 3TZ
Tel: 0171 351 7811
Provides home care nurses through the Macmillan Service and financial grants for people with cancer and their families.
Cancer Research UK
Tel: 0300 123 1022
Has patient information on all types of cancer and has a clinical trial database.
Marie Curie Cancer Care
28 Belgrave Square
London SW1X 8QG
Tel: 0171 235 3325
Runs eleven centres (hospices) throughout the UK, and a nation-wide Marie Curie nursing service, providing hands-on care for patients in their own homes throughout the day or night, free of charge.
Maggie’s Wallace Centre
Addenbrooke’s Hospital Concourse 21 Milton House, Puddicombe Way, Cambridge CB2 OQQ Cambridge CB2 OAD
Tel: 01223 596379 Tel: 01223 249220
Drop in weekdays 10am-4:30pm (closed Fridays) Drop in weekdays 10am-4:30pm
Offers emotional, practical and social support to people with cancer and their families and friends. All services are free and you don’t need an appointment or a referral – you can just pop in for a cup of tea. You can talk to one of the cancer support specialists for more information about your individual circumstances, or you can join in any part of the programme, whether it’s practical advice on benefits or nutrition, a support group or a relaxation course, or simply meeting people around the kitchen table who are going through the same things as you.
We are smoke-free
Smoking is not allowed anywhere on the hospital campus. For advice and support in quitting, contact your GP or the free NHS stop smoking helpline on 0800 169 0 169.
Help accessing this information in other formats is available. To find out more about the services we provide, please visit our patient information help page (see link below) or telephone 01223 256998. www.cuh.nhs.uk/contact-us/accessible-information/
Cambridge University Hospitals
NHS Foundation Trust
Hills Road, Cambridge
Telephone +44 (0)1223 245151