A guide to autologous stem cell transplant

Your first point of contact during your treatment will be your stem cell transplant CNS. They are a senior member of the haematology nursing team and work alongside your consultant, your lymphoma, myeloma or oncology CNS, and other nursing staff looking after you.

If you are using a print-out of this page, you can fill in the name of your CNS here: 

When you come into hospital for your transplant, you will be cared for by the consultant on duty at the time. This may not be the consultant you have met at your previous clinic visits to UCLH. UCLH is a large teaching hospital. This means there are nursing and medical students doing their training here, supervised by qualified staff. We will always ask if you agree for a student to be present during a consultation or treatment. If you don’t agree, it will not affect your care or treatment in any way.

If you have any questions or need more information, please let us know.

You may meet a number of healthcare professionals during your care in hospital. They will help to meet all your care needs and make your treatment as comfortable as possible.

Pharmacist

Our pharmacists check all the medicines given to patients. You will usually meet a pharmacist before your admission to hospital.

Dietitian

A dietitian can give you advice about your diet and offer specialist support. For example, if you are finding it difficult to eat, they can arrange supplement drinks and snacks to be delivered to you.

Physiotherapist (if you are an inpatient)

Our physiotherapist is available from Monday to Friday, 9am to 5pm. Speak to your nurse, who can refer you.

Occupational therapist (if you are an inpatient)

Occupational therapy promotes and restores independence, health and wellbeing. An occupational therapist can help you to get back to your daily activities. They can also help you to work and live to your full potential.

Macmillan support and information team

The Macmillan support and information team offer:

• Emotional support, advice and information
• Welfare and benefits advice
• Wig and scarf tying advice
• Complementary therapies, such as massage and relaxation
• Diet and nutrition advice
• Psychological care and counselling
• A programme of workshops, courses and events.

If you would like to use any of these services, please talk to your nurse. You can also drop in to talk to one of the support and information specialists. They are based on the ground floor of the University College Hospital Macmillan Cancer Centre; Tel: 020 3447 8663 or 020 3447 3816. 

Symptom control and palliative care team

Palliative care aims to control symptoms and help you have a better quality of life. It is available to all patients at any stage of their illness and treatment. It focuses on a holistic or ‘whole’ approach to health and wellbeing. This includes your physical, emotional, spiritual and social needs. The palliative care team offer practical advice and guidance on any problems facing you, your family and those closest to you. They also offer specialist advice and support to the nursing and medical team in charge of your care.

Research team

As a large research centre, UCLH runs a range of research studies and clinical trials. They aim to improve knowledge, treatment and outcomes in cancer care.

• Research studies usually involve giving a sample of blood or doing a questionnaire.
• Clinical trials may involve taking a new drug or having a new procedure.

Your doctor will talk to you about any research studies and clinical trials that may be suitable for you. If you choose to take part in a clinical trial, you will be supported by a research nurse/clinical trial practitioner. They will be your main contact during that time and give you any relevant information. It is up to you whether you wish to get involved. If you decide not to take part, or if you choose to withdraw at any time, your treatment may change but you can expect the same level of care.

Spiritual and pastoral care team

Spiritual and pastoral support is available to all patients, family and friends. If you would like to see one of our spiritual care providers, speak to your nurse who can organise this.

In an autologous stem cell transplant your own cells are used to replace those destroyed by high-dose chemotherapy and/or radiotherapy. We will harvest (collect) some of your stem cells before the high-dose treatment. We will then return (infuse) them to you after the high-dose treatment has been completed. We collect your stem cells because the high-dose treatment destroys both cancer cells and healthy blood cells. It also affects the bone marrow’s ability to produce stem cells and increases your risk of:

• infection – by lowering your level of white blood cells
• becoming anaemic – by lowering your level of red blood cells
• bleeding – by lowering your level of platelets.

By returning your stem cells we 'rescue’ your bone marrow from the damaging effects of the high-dose treatment. The infused cells start to make healthy blood cells again and help your blood levels to return to normal. This usually happens within 10 to 14 days, compared to weeks or even months without the stem cells. Depending on your disease, the aim of the stem cell transplant will be to prolong your remission (time when there are no signs of cancer) or cure your illness.

Stem cell transplantation was first used in the 1960s and has become an effective treatment option. We will only offer you the treatment if we believe you will benefit from it. Your consultant and stem cell transplant CNS will explain the treatment in detail. They will also talk to you about the benefits and possible complications specific to you.

Tests needed before the stem cell transplant

You will have a number of tests to make sure that you are ready for your stem cell transplant. Please note, you may not need all of the tests listed below.

If you would like more information about the tests you will have, please speak to your nurse.

• You will have a routine blood test to check the levels of your white blood cells, red blood cells and platelets. Another blood test taken at the same time will also check how your liver and kidneys are working.

Photo courtesy of Canva.com

• Women of childbearing age who have not gone through the menopause will need to take a pregnancy test.
• You will need one of the following scans to check your heart: a MUGA (multiple gated acquisition) scan, echocardiogram or ECG (electrocardiogram).
• You will need a GFR (glomerular filtration rate) scan or creatinine clearance test to check your kidney function.
• You may need a lung function test, also known as a pulmonary function test, to check how well your lungs are working.
• You may need a bone marrow test or biopsy to check if your bone marrow has been affected by your disease.
• Scans such as CT, PET and MRI are routinely performed, to find out how well your disease has responded to your previous and current chemotherapy.

We will try to minimise your visits to hospital to have the tests done whenever we can. It is important that you keep and attend your scheduled appointments. This will help to make sure that the stem cell collection and transplant take place at the right time for you. If you can’t attend an appointment, please let your stem cell transplant CNS know.

Will I need a PICC for my transplant?

Yes, we will insert a PICC (peripherally inserted central catheter) into a vein in your arm on the day you are admitted to hospital for your transplant.

The PICC is a thin, flexible tube that is threaded through the vein in your arm until it reaches a vein near the heart. The end of the tube that is outside of your body will have a screw cap where we can attach drips. We will use the PICC to give you medicines and take regular blood samples. We will also aim to infuse your stem cells through your PICC.

Sometimes the PICC can become infected and we may need to remove it. This can happen when your immune system is low during treatment. If this is the case, you will continue your treatment with a cannula, also referred to as Venflon. A cannula is a small, flexible, plastic tube that is inserted through the skin into one of your veins in your arm or hand. You may have had a cannula before, for example when having chemotherapy as an outpatient.

If your veins are fragile, they may not be able to handle the volume of fluid or antibiotics you will need during your transplant. We may then need to replace your PICC with a central line. This is a soft plastic tube that is inserted into one of the larger veins at the side of your neck or in your groin.

If you’d like more information about the PICC or central line, please talk to the nurse looking after you.

We will ask you to sign a consent form before you are admitted to hospital for your stem cell transplant. This will confirm that you agree to have the procedure and that you understand what it involves. If there is anything you are unsure of or have any questions at any stage, it is important that you talk to your doctor or nurse.

When all the tests have been done and your stem cells collected, your consultant and stem cell transplant CNS will carefully review the results. They will again consider all the potential benefits and risks and discuss them with you. All this is to make sure that the transplant is right for you at this time.

When you and your healthcare team agree to go ahead, a tailored timetable detailing your transplant process will be created for you. Most patients are admitted to hospital within a few weeks.

Steps of the stem cell transplant

High-dose chemotherapy (also called conditioning chemotherapy)

High-dose chemotherapy destroys as many cancer cells as possible that are still in your body after you have completed your standard-dose treatment. It also destroys healthy blood cells, greatly reducing the levels of blood cells in your blood. Your team will see you every day and monitor you closely during the high-dose treatment. You can speak to them at any point if you have any questions or concerns.

Depending on your disease, your chemotherapy will take between one and six days. Your stem cell transplant CNS will advise you. The chemotherapy nurse and pharmacist will explain your treatment timetable. They will also ask you about your previous chemotherapy experiences. This will help them to plan for your specific needs and to minimse any discomfort you may have during your treatment. Please talk to them about any questions or concerns you may have.

Stem cell infusion (return)

We will infuse your stem cells either 24 or 48 hours after the start of your last chemotherapy. This will depend on your kidney function (GFR rate). Your healthcare team will refer to the day you receive your stem cells as ‘day zero’ (0).

Stem cell infusion is painless and is very much like having a blood transfusion. It usually takes between one and two hours to complete. We will use your PICC to infuse your stem cells. If there are any issues with your PICC, you will have a cannula instead. We will remove the cannula after the cells have been infused.

Your stem cells will be frozen when they are delivered to your bedside. Two haematology nurses will check your details to make sure they are all correct. The cells will be gently thawed in a temperature-controlled waterbath next to your bed. Once defrosted, they will be immediately infused.

A preservative called DMSO (dimethyl sulfoxide) is used to protect the frozen cells during storage. You may experience some side effects or allergic-type reactions from the DMSO during the infusion. These include nausea, vomiting, a high temperature, skin flushing or feeling generally unwell. Thiese are common and usually wear off after a couple of hours. We will give you anti-sickness medication and an antihistamine such as Piriton® before the infusion.

DMSO releases a strong sweetcorn-like smell once the stem cells are thawed. It will be excreted from your body through your breath, your skin and via your kidneys. This means that you will smell of sweetcorn for a day or two, until the DMSO is out of your system. There is nothing you can do to avoid this and it will wear off after a few days.

Supportive care

The infused stem cells will find their way straight back into your bone marrow. From there they will begin to grow and form new blood cells, which usually takes between 10 and 14 days. During this time, you will be at high risk of infection and other problems, such as bleeding and anaemia. The focus of our care will be to support you and your relatives, and we will monitor you closely.

A typical day is different for each patient depending on their care needs at the time. Each day, you can expect that:

• You will receive all necessary and prescribed treatment.
• The doctors from your medical team will visit you. They will tailor your treatment if needed and answer any questions you may have. Your consultant on duty will see you twice a week, usually on a Tuesday and Friday.
• Your PICC will be assessed for any signs of infection.
• We will check your weight and monitor your fluid intake/output.
• We will measure your blood pressure, temperature, breathing rate, pulse and oxygen levels. This is commonly known as having your observations done. We may need to do the observations more frequently when you are neutropenic, if you develop an infection or if you become unwell in any other way.
• We will encourage you to have a bath or a shower. In normal circumstances your own skin bacteria is harmless. But when your immune system becomes low it can cause an infection. For this reason, good personal hygiene is essential. This includes daily showering or bathing and thorough hand-washing after using the toilet. Keeping hands clean is one of the most important things you and your visitors can do to minimise the spread of infection. Alcohol gel is provided in every room and at various points around the unit.

Infection

In the days following your stem cell infusion and until the new blood cells form, you will become ‘immuno-compromised’. You may hear the nurses and doctors refer to this as being ‘neutropenic’. This means that your immune system isn’t working properly and you are at a high risk of developing an infection. Signs of infection can vary but typically they are:

• Shivers or hot flushes
• Temperature close to or above 38°C
• Persistent episodes of vomiting and/or diarrhoea
• Shortness of breath or difficulties with breathing.

If you develop an infection, you will have to be admitted to hospital. This applies even if you started your transplant in the Ambulatory Care Unit (see the section on this page about the Ambulatory Care Unit). You will receive intravenous antibiotics until your symptoms clear and/or until your immune system begins to recover. This can last from a few days to a week or two.

During this time, you may also need intravenous fluids and blood product support. This could be blood or platelet transfusions. Developing a chest infection is common when undergoing a stem cell transplant. This risk increases when you are not very active or you are on bed rest. For this reason it is important to get up and move about or take short walks regularly.

If you are a smoker, we strongly advise that you stop before your transplant. If you need help with giving up smoking, please contact your CNS or GP.  

Reducing your risk of infection is of major importance following the transplant. We will advise you on any precautions you should take. You will stay in a single en suite room to minimise this risk further.

If you develop a potentially transmissible infection (for example diarrhoea), we will take samples and send them for analysis. If you develop cold or flu-like symptoms, we will take swabs of your nose and throat.

If a transmissible infection is confirmed, you will be transferred to a different ward to minimise the risk to other patients in the unit. The nursing teams of that ward will look after you. They will be supported by the haematology and chemotherapy inpatient teams that have been looking after you until that point. Your doctors will remain the same and will monitor your care as before.

All visitors must wash their hands and use the alcohol gel when entering and leaving your room. People are not allowed to visit when they have runny noses, colds, coughs, flu or any other
potentially transmissible infections; or have been in contact with shingles, chickenpox, measles or any other viruses.

Bleeding

The chemotherapy and/or radiotherapy affect your ability to produce white cells, platelets and red cells. A reduction in your platelet count means that you are at an increased risk of bleeding and bruising. Please follow the guidance below to help prevent bleeding problems:

• If you need to shave, use an electric shaver only.
• Don’t use dental floss or a hard toothbrush. Use a baby or soft toothbrush instead, and clean only your teeth and not your gums.
• A common site for bleeding is the nose. Let your nurse know of any nosebleeds, never pick your nose and avoid excessive blowing.
• Watch for blood in your pee and poo. If there is blood in your pee, it will appear tea-coloured or red; poo will look black and tarry or bright red. Please tell your nurse about any changes.
• If you cough or vomit blood, make sure you tell your nurse.
• Please report any headaches you may have. All women, except those who are post-menopausal, will need to take hormone tablets similar to the pill to stop menstruation. This is to prevent heavy bleeding, which may be difficult to control when your platelets are low.

Anaemia

Your red blood cell levels will be low at times throughout your treatment and you may experience some of the following symptoms:

• Paleness
• Weakness
• Loss of energy
• Loss of appetite
• Breathlessness.

We will monitor your blood counts daily and give you a blood transfusion if needed.

It is important to be aware of the signs of infection, anaemia and bleeding, and of any other changes in your condition. Please tell your nurse or doctor about any changes, even if they seem small or minor to you.

Mucositis

Following chemotherapy and/or radiotherapy, your mouth may become tender or swollen and ulcers may form. This is known as mucositis. This can be distressing but regular and thorough mouth care can greatly reduce or possibly stop this from occurring. It can also help to prevent infections in your mouth.

Your nurses will tell you more about mouth care and when it should be done. Pain relief can also be prescribed if your mouth becomes painful.

Nutrition

Our haematology dietitian will assess your nutritional needs and can advise you on eating and drinking. For more information about nutrition, please ask for a copy of the leaflet ‘Food and cancer’ produced by the charity Trekstock.

Nausea and vomiting

Nausea and vomiting are common side effects associated with chemotherapy and radiotherapy. They can usually be controlled or greatly reduced with anti-sickness medication. The chemotherapy nurses and pharmacist will talk to you about this before treatment starts and during your admission.

Diarrhoea

This is a common side effect of chemotherapy and radiotherapy. We can give you medication to help ease it when it occurs so please let your nurses or doctors know as soon as possible.

Alopecia (hair loss)

Certain chemotherapy drugs cause hair loss. This is initially from the head but also from the eyebrows, eyelashes, underarm and pubic area. Hair loss is temporary and the hair will start to grow back about five to eight weeks after the start of treatment. The colour and texture of your hair may also differ slightly from before.

Hair loss can be quite distressing. Hair often falls out in clumps from your head when brushed or rubs off on your pillow. Some people prefer to let it fall out as slowly as possible. Others decide to shave it all as soon as patching occurs. If you do decide to shave your hair, please remember to use electric clippers only.

Some patients choose to cover their heads and wear turbans, scarves, hats or wigs. If you would like advice on wigs and headwear, you can see a wig adviser at the Macmillan Support and Information Service on the ground floor of the Cancer Centre. You can also ask your nurse to arrange for the wig adviser to visit you on the ward.

If you decide not to cover your head on leaving hospital, you will need to protect your scalp from sunburn in the summer and cold in the winter.

Fertility

High-dose chemotherapy and radiotherapy have a negative effect on fertility. You may have already talked to your consultant about this by the time you come to hospital for your transplant.

Women may be able to save fertilised eggs. This will depend on their underlying disease and previous treatment. Some women experience menopausal symptoms earlier than they would otherwise. Your doctor will talk to you about this in your post-transplant clinic appointment.

Men have the option of sperm storage; this may have already been done at the time of your original diagnosis.

There will be between three and four weeks from the start of treatment to the time you leave hospital after your transplant. This may be longer if you develop an infection or are unwell and need extra nursing and medical support. Once your blood counts improve, the symptoms you experience in the neutropenic phase should also get better. As mucositis resolves, eating and drinking will become easier. You may also be able to do more for yourself, even if you are feeling weak.

In preparation for you going home, we will change any intravenous medicines to oral tablets. We will also give you an injection of G-CSF to kick-start your bone marrow into producing new cells. This will be about six days after your stem cell infusion. You will be able to go home when your blood counts have recovered enough, and your medical team believe it is safe for you to do so.

You may be able to have the first part of your treatment in the Ambulatory Care Unit. This will depend on your circumstances; your nurse and doctor will assess if it’s suitable for you. If it is, you will receive your care in the Ambulatory Care Unit during the day, as if you were an outpatient. And at night you will stay in one of our hotels situated a short walk away.

The Ambulatory Care Unit is located in the University College Hospital Macmillan Cancer Centre. You can expect the same standard of care in the Unit as if you were staying on a ward. You will have 24-hour access to expert nursing and medical advice. And if for any reason you need to be admitted to the hospital, this can be arranged at any time. A companion/carer will be able to stay with you and we will do our best to arrange your treatment around your needs.

Having your treatment in Ambulatory Care gives you as much independence and as much normality to your daily life as is possible during this time. Your healthcare team will help you decide when the time is right for you to be admitted to our main ward. For more information on Ambulatory Care, please visit the Ambulatory Care page on our website.

It is important that you contact the hospital without delay if you become unwell in the hotel during the night. You should not wait until the morning to be seen in Ambulatory Care. We will give you all the contact numbers on admission.

There are no set rules about what to do and what to avoid before your transplant. But it is important that you follow the advice below during your treatment:

•    Attend your scheduled hospital appointments.

•    Try to stay as well as possible. Avoid people (including children) with coughs, colds and contagious illnesses, such as chickenpox. If you do develop any signs of infection or a cold, it’s important that you inform your CNS as soon as possible. We need to make sure that you are as well as you can be before you start your transplant.

•    Have a dental appointment to check for any cavities or dental infections before you start your treatment. Your dentist can contact us on the numbers given at the back of this booklet if needed.

•    Eat a healthy diet, and try to drink at least two litres of fluid a day in addition to your usual cups of tea and coffee. Extra fluid can be water, squash or juice.

We will ask you to have a blood test, either at your local hospital or at UCLH one week after you leave hospital. You will have your first follow-up appointment one to two weeks after leaving hospital. This will be either a telephone or face-to-face appointment.

Please read our information on Recovery following an autologous stem cell transplant to find out what you can expect in the months after your transplant; it provides information about your follow-up care and things to look out for at home. It also offers useful tips on physical activity, fatigue and nutrition, among others. Ask your CNS for more Information, or read our stem cell web pages at uclh.nhs.uk/stemcellbmt

Macmillan Cancer Support

Offers information, support and advice for anyone affected by cancer.

Tel: 0808 808 00 00

Website: macmillan.org.uk

Blood Cancer UK

Supports anyone worried about blood cancer with expert information and advice.

Tel: 0808 2080 888

Website: bloodcancer.org.uk

Anthony Nolan

Offers support for people with blood cancer who need a stem cell or bone marrow transplant.

Tel: 0303 303 0303

Website: anthonynolan.org

Cancer Research UK

Provides information about cancer and clinical trials.

Tel: 0300 123 1022 

Website: cancerresearchuk.org

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

Stem cell transplant CNSs

Tel: 020 3447 7359 (Monday to Friday, 9am to 5pm)

Out of hours (for urgent medical advice)

Tel: 07852 220 900

How to find us

University College Hospital, 235 Euston Road, London NW1 2BU

University College Hospital Macmillan Cancer Centre, Huntley Street, London WC1E 6AG

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