For people with autoimmune conditions, including multiple sclerosis (MS) and scleroderma: A guide to autologous stem cell transplant

Your first point of contact during your treatment will be your stem cell transplant clinical nurse specialist (CNS). They are senior haematology nurses who work alongside your consultant and other nursing staff looking after you.

If you are using a print-out of this page, you can complete your CNS's details below: 

My CNS is ..........................................................................................

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.

Please tell us if you have any questions or need more information at any time.

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
• Wig and scarf tying advice
• 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 

Symptom control and palliative care team

Palliative care aims to control symptoms and help you have a better quality of life. 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 can offer you practical advice relating to your symptoms around the time of your transplant. They also offer specialist advice and support to the nursing and medical team in charge of your care.

Research team

UCLH is a large research centre, running many studies and clinical trials to improve the treatment and outcomes in care.

• Research studies may involve giving a blood sample or filling in a questionnaire.
• Clinical trials may involve trying a new medication or procedure.

Your doctor will talk to you about any research studies and clinical trials that may be suitable for you. If you choose to join a clinical trial, a research nurse or clinical trials practitioner will be your main contact during that time.

It is up to you whether you wish to get involved. If you decide not to take part or later want to withdraw, your treatment may change but you will still receive the same high standard 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.

The treatment have two phases:

• Phase 1: We mobilise and collect (harvest) your stem cells. This is done as an outpatient. After this, you will have a break of about one month with no treatment.
• Phase 2: You will have high-dose chemotherapy followed by your stem cell infusion (return). This phase requires staying in the hospital for about four weeks.

We collect your stem cells because the high-dose treatment in Phase 2 destroys both the cells responsible for your autoimmune condition, as well as your 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.

Returning your stem cells helps to ’rescue’ your bone marrow from
the effects of high-dose treatment. The infused cells start to make healthy blood cells and help your blood levels to return to normal. This usually takes 10 to 14 days, compared to weeks or even months without the stem cells. We also hope that the new cells will ‘not know’ how to attack your body in the way that happened before.

The aim of the stem cell transplant is to keep your disease in remission (a period when there are no signs of the disease). If successful, it could, over time, help to stabilise or lessen the disability you have experienced.

Stem cell transplantation was first used in the 1960s and has become an effective treatment option for many blood cancers. We also offer it to people with autoimmune conditions who meet the criteria to undergo the transplant. Your consultant and stem cell transplant CNS will explain the treatment in detail. They will also talk to you about the possible benefits and complications specific to you.

We will only offer you the treatment if you meet the criteria for the transplant and we believe you may benefit from it.

This page includes information about Phase 2 of the treatment only. For more information about Phase 1, visit our page ‘For people with autoimmune conditions, including multiple sclerosis (MS) and scleroderma: Collecting stem cells from your blood’.

You will have different tests to make sure that the treatment is suitable for you. Please note, you may not need all of the tests listed below. If you’d like more information about the tests you will have, speak to your nurse.

• Routine blood tests:
  • To check the levels of your
    white blood cells, red blood cells
    and platelets
  • To check how your liver and
    kidneys are working
  • To check for signs of active
    viruses, including HTLV,
    syphilis, HIV and hepatitis.

• Pregnancy test: For women of childbearing age who have not gone through the menopause.
• MUGA (multiple gated acquisition) scan, ECG (electrocardiogram) or echocardiogram: To check that your heart is healthy.
• GFR (glomerular filtration rate) scan or creatinine clearance test: To check your kidney function.
• Lung function test, also known as a pulmonary function test: To check how well your lungs are working.
• Bladder scan: To check how well your bladder empties.
• People with MS may have an up-to-date MRI scan.

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.

Yes, we will insert a PICC (peripherally inserted central catheter)
into a vein in your arm the day after 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 part of the tube that is outside of your body will have three endings with screw caps 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 receiving outpatient treatment.

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.

For more information about PICCs, visit our page Peripherally inserted central catheters.

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 if you 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 for your transplant will be created for you. Most patients are admitted to hospital around a month after their stem cell collection.

Phase 2 step-by-step

High-dose chemotherapy (also called conditioning chemotherapy)

High-dose chemotherapy includes the chemotherapy drug cyclophosphamide in combination with an immunosuppresive drug called anti-thymocyte globulin (ATG). The goal is to destroy as many abnormal cells causing your autoimmune condition as possible.

High-dose chemotherapy also destroys T-cells and other healthy blood cells. This causes a significant drop in your blood cell levels, making you very prone to infections.

The high-dose treatment will take five days. Your team will see you every day and monitor you closely during that time. You can speak to them at any point if you have any questions or concerns.

The chemotherapy nurse and pharmacist will explain your treatment timetable and ask about your previous treatments. This will help them to plan for your specific needs and try to minimise any potential issues. 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 completing your last high-dose chemotherapy. This will depend on the treatment plan you are following. 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 water bath 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. They include feeling sick or being sick, a high temperature, skin flushing or feeling generally unwell. These 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 your kidneys. This means that you will smell of sweetcorn for a day or two until 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 through this period, and we will monitor you closely.

Infection

In the days following your stem cell infusion, while your new blood cells are forming, your immune system will be weakened. This is called being ‘immuno-compromised’ or ‘neutropenic’. During this time you are at a higher risk of infections.

Signs of infection can vary but common symptoms include:

• Shivers or hot flushes
• Temperature close to or above 38°C
• Being sick or loose, watery poo (diarrhoea)
• Shortness of breath or difficulties with breathing.

If you develop an infection, you will receive intravenous (IV) antibiotics until your symptoms clear or until your immune system begins to recover. This can take from a few days to a week or two.

During this time, you may also need IV 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’s 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 very important after your transplant. We will advise you on the precautions you should take. To further minimise this risk, you will stay in a private room with its own bathroom.

All visitors must wash their hands and use the alcohol gel when entering and leaving your room.

Visitors are not allowed if:

• They have runny noses, colds, coughs, flu or any other potentially contagious infections.
• They have been in contact with shingles, chickenpox, measles or any other viruses.

If you develop a potentially contagious 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 contagious 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 care for 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.

Bleeding

Chemotherapy can affect your ability to produce white cells, platelets and red cells. A reduced platelet count increases the 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 like 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

Chemotherapy can make your mouth tender or swollen and may cause ulcers. This is known as mucositis. While this can be uncomfortable, regular and thorough mouth care can help to prevent or reduce it, and lower the risk of mouth infections. Your nurses will explain how to care for your mouth and when to do it. If your mouth becomes painful, they can also give you some pain relief.

Nutrition

Our haematology dietitian will assess your nutritional needs and can advise you on eating and drinking.

Feeling sick or being sick

These are common side effects of having chemotherapy. 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 hospital stay.

Diarrhoea (loose poo)

This is a common side effect of chemotherapy. If it happens, please let your nurses or doctors know as soon as possible. We can give you medication to help with it.

Alopecia (hair loss)

Certain chemotherapy drugs can cause hair loss. This is initially from the head but also affecting your eyebrows, eyelashes, underarms and pubic area. This hair loss is temporary and your hair will start to grow back about five to eight weeks after treatment starts. The colour and texture of your hair may be slightly different when it grows back.

Hair loss can be upsetting. It may fall out in clumps, especially when brushing or rubbing against your pillow. Some people prefer to let the hair fall out gradually. Others decide to shave it once they notice patchy areas. If you decide to shave your hair, please use electric clippers only.

Some people choose to cover their heads with turbans, scarves, hats or wigs. If you would like advice on wigs or headwear, you can see a wig adviser at the Macmillan Support and Information Service. You can also ask your nurse to arrange a visit from the wig adviser on the ward. To find out more, you can read our page Wig and scarf tying advice.

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

Fertility

High-dose chemotherapy can affect your fertility. Your doctor will talk to you about your options before the stem cell collection, and refer you to a specialised fertility unit.

• For women: Women may be able to save their eggs. Eggs will need to be collected before chemotherapy and can be stored at UCLH. After the transplant, some women may experience early menopause and might need hormone-replacement therapy (HRT). Your doctor and fertility or endoctrine specialists will talk to you about this in your post-transplant clinic appointment.
• For men: Men have the option to store their sperm. We can arrange this at UCLH.

You can expect to stay in hospital for about three to four weeks from the start of treatment until you leave after your transplant. Your stay may be longer if you develop an infection or need extra nursing or medical care.

As your blood counts improve, symptoms from the neutropenic phase should get better. Mucositis will heal, making it easier to eat and drink. You may also slowly feel strong enough to do more for yourself.

In preparation for you going home, we will change any IV 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 typically happens five or six days after your stem cell infusion, depending on your treatment plan.

You will be able to go home when your blood counts recover enough and your medical team believe it is safe for you to do so.

A typical day is different for each patient depending on their care needs but here is what you can expect each day:

Treatment and care:

You will receive all the necessary and prescribed treatments.

Doctor visits:

Your medical team will visit you daily to monitor your progress, adjust your treatment if needed, and answer any questions. Your consultant on duty will see you twice a week, usually on Tuesday and Friday.

PICC check:

Your PICC will be assessed for signs of infection.

Monitoring:

We will check your weight and monitor your fluid intake and output.

We will measure your blood pressure, temperature, breathing rate, pulse and oxygen levels. We may need to do these checks more frequently when you are neutropenic, if you develop an infection or if you become unwell.

Personal hygiene:

We will encourage you to have a bath or a shower every day. When your immune system is low, bacteria that are normally harmless can cause infections. For this reason, good personal hygiene is essential. Handwashing after using the toilet is especially important. Alcohol gel is also available in every room and throughout the unit for you and your visitors. Keeping hands clean is one of the most important things you and your visitors can do to minimise the risk of infection.

There are no set rules about what to do and what to avoid before your transplant. But it's 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 notice any signs of infection or a cold, contact 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. If necessary, your dentist can contact us for advice.
• Eat a healthy diet, and try to drink at least two litres of fluid a day in addition to tea and coffee. You can include water, squash or juice as extra fluids.

You will need blood tests at UCLH twice a week for the first few weeks after leaving hospital. Over time, these will happen less often. Your first follow-up appointment will be around two weeks after leaving hospital. This will most likely be a telephone appointment.

For detailed guidance on what to expect in the months after your transplant, visit our page ‘For people with autoimmune conditions, including multiple sclerosis (MS) and scleroderma: Recovery following your stem cell transplant’.

Stem cell transplant CNSs

Tel: 07538 702 196 (Monday to Friday, 9am to 5pm)

Please leave a message if no one is available to answer your call. We will call you back as soon as we can.

Admin queries

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

Out of hours for urgent medical advice

Tel: 07852 220 900

MS Society

Tel: 0808 800 8000

Website: mssociety.org.uk

Scleroderma and Raynaud’s UK

Tel: 020 3893 5998

Email: info@sruk.co.uk

Website: sruk.co.uk

Anthony Nolan

Tel: 0303 303 0303

Email: patientinfo@anthonynolan.org

Website: anthonynolan.org

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