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 closely with your consultant and other nursing staff caring for you.

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

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

When you come into hospital for your transplant, the consultant on duty at the time will care for you. This may be a different consultant from the one you met at your earlier clinic appointments at UCLH.

UCLH is a large teaching hospital. This means that nursing and medical students may be involved in your care, under supervision of qualified staff. We will always ask for your permission before a student joins a consultation or treatment. If you don’t agree to have students present, this will not affect your care or treatment.

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

During your care in hospital, you may meet several healthcare professionals. They are here to support 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 can help you to stay mobile and keep active. Speak to your nurse, who can refer you.

Occupational therapist (if you are an inpatient)

Our occupational therapist can help you regain independence and return to your daily activities. They support your health and wellbeing, helping you to live and work 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
• 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 speak 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 focuses on managing symptoms and improving your quality of life. It takes a holistic or ‘whole-person’ approach, supporting your physical, emotional, spiritual and social needs.

The palliative care team can give you practical advice and support with symptoms around the time of your transplant. They also offer specialist advice and support to the doctors and nurses in charge of your care.

Research team

UCLH is a large research centre, running many studies and clinical trials to improve 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, we use your own stem cells to replace the healthy blood cells that are destroyed by high-dose chemotherapy or radiotherapy.

The treatment has two phases:

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

Why do we collect your stem cells?

High-dose treatment in Phase 2 destroys both cancer cells and healthy blood cells. It also affects the bone marrow’s ability to make new stem cells, increasing your risk of:

• infection – due to low white blood cells
• becoming anaemic – due to low red blood cells
• bleeding – due to low platelets

Returning your stem cells helps to ’rescue’ your bone marrow from these effects. Once infused, your stem cells start making healthy blood cells, helping your blood levels to return to normal. With the stem cells, this usually takes 10 to 14 days, instead of weeks or even months.

What is the aim of the transplant?

Depending on your condition, the aim may be to prolong your remission (a time when there are no signs of cancer) or to cure your illness.

Stem cell transplants have been used since the 1960s and are now an effective treatment for many conditions. We only offer this treatment if you meet the criteria and we believe it is likely to benefit you.

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.

This page includes information about Phase 2 of the treatment only. For more information about Phase 1, visit our page Collection of stem cells from your blood.

You will have different tests to make sure this treatment is suitable for you. You may not need all the tests listed below. If you would like more information about any test, please speak to your nurse.

• Routine blood tests:

  These check:

  • your levels of white blood cells, red blood cells and platelets
  • how well your liver and kidneys are working
  • for signs of active viruses, including HTLV, syphilis, HIV and hepatitis

Photo courtesy of Canva.com

• Pregnancy test: For women of childbearing age who have not gone through the menopause.
• MUGA scan, echocardiogram or ECG (electrocardiogram): To check that your heart is healthy.
• GFR (glomerular filtration rate) scan or creatinine clearance test: To check how well your kidneys are working.
• Lung function test, also called a pulmonary function test: To check how well your lungs are working.
• Bone marrow test or biopsy: To check if your bone marrow has been affected by your illness.
• Scans, such as CT, PET and MRI: To check how well your disease has responded to your previous and current chemotherapy.

We will try to reduce the number of hospital visits needed for these tests whenever we can.

It is important that you keep and attend all your appointments. This helps to make sure your 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 on the day you are admitted to hospital.

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 outside 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 blood samples. We will also aim to give your stem cell infusion through your PICC.

Sometimes a PICC can become infected, especially when your immune system is low during treatment. If this happens, we may need to remove it. You would then continue treatment with a cannula (Venflon). This is a small, flexible tube inserted into a vein in your arm or hand. You may have had a cannula before when having chemotherapy as an outpatient.

If your veins are too fragile to cope with the fluids or antibiotics you need, we may need to replace your PICC with a central line. This is a soft tube inserted into a larger vein in your neck or 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 treatment and 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.

Once all your tests are complete and we have collected your stem cells, your consultant and stem cell transplant CNS will carefully review the results. They will consider all the potential benefits and risks again and talk to you about them. This helps to make sure that this is the right time for your transplant.

When you and your healthcare team agree to go ahead, we will create a personalised timetable for your transplant. Most people are admitted to hospital about two to three weeks after their stem cell collection.

Phase 2 step-by-step:

High-dose chemotherapy (also called conditioning chemotherapy)

You will receive high-dose chemotherapy to destroy as many cancer cells as possible that are still in your body after your standard-dose treatment. This chemotherapy also affects your healthy blood cells, so your blood counts will drop. Because of this, your team will see you every day and monitor you closely. You can speak to them at any time if you have any questions or concerns.

Depending on your condition, the chemotherapy takes between 1 and 6 days. Your stem cell transplant CNS will advise you.

A chemotherapy nurse and a pharmacist will go through your treatment timetable with you. They will ask about previous chemotherapy you have had so they can plan for your needs and help to reduce any discomfort. Please talk to them about anything you are worried about.

Stem cell infusion (your stem cells returned to you)

You will receive your stem cells either 24 or 48 hours after the start of your last chemotherapy. This will depend on how your kidneys are working (GFR rate). We call the day you receive your stem cells as ‘day zero’ (0).

The infusion is painless and is very much like having a blood transfusion. It usually takes 1 to 2 hours to complete.

We will use your PICC to infuse your stem cells. If we cannot use it for any reason, you will have a cannula instead. We will remove the cannula after the infusion.

Before we start, two haematology nurses will check your details. Your stem cells will arrive frozen and we will thaw them gently in a warm waterbath next to your bed. Once defrosted, we will infuse them straight away.

The stem cells are stored with a preservative called DMSO (dimethyl sulfoxide) to help protect them. Because of this, you may notice some temporary side effects during the infusion. These can include:

• feeling sick (nausea) or being sick (vomiting)
• a high temperature
• skin flushing
• feeling generally unwell

These are common and usually settle after a couple of hours. We will give you anti-sickness medicine and an antihistamine (such as Piriton®) before the infusion.

DMSO releases a strong, sweetcorn-like smell once the stem cells are thawed. You may notice the smell on your breath, skin and in your urine for a day or two. This is normal and will wear off as the DMSO leaves your body.

Supportive care

After the infusion, your stem cells will find their way straight back into your bone marrow. They will then start to grow and make new blood cells. This usually takes 10 to 14 days.

During this time, your blood counts will be very low, which puts you at high risk of infection, bleeding and anaemia. Our team will monitor you closely and support you and your relatives through this period.

Infection

While your new blood cells are forming after your stem cell infusion, your immune system will be weak. You may hear this 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 (vomiting) or having loose, watery poo (diarrhoea)
• shortness of breath or difficulty 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 (more information below). You will receive intravenous (IV) antibiotics until your symptoms clear or your immune system begins to recover. This can last from a few days to a week or two.

You may also need IV fluids and blood products, such as blood or platelet transfusions.

Chest infections are common when undergoing a stem cell transplant. The risk increases if you are not very active or you are on bed rest. Try to get up, move around or take short walks regularly.

If you smoke, we strongly advise that you stop before your transplant. Your CNS or GP can help you with stopping smoking.

Reducing your risk of infection is very important after your transplant. We will advise you on any precautions you should take. You will also stay in a private room with its own bathroom to help protect you from infection.

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 we think you may have a contagious infection (for example diarrhoea), we will take samples for testing. If you develop cold or flu-like symptoms, we will take swabs from your nose and throat.

If we confirm that you have a contagious infection, we will move you to another ward to protect other patients. The nurses on that ward will care for you, supported by the haematology and chemotherapy teams. Your doctors will remain the same and will monitor your care as before.

Bleeding

Chemotherapy and radiotherapy can reduce the number of white cells, platelets and red cells you make. Low platelets increase your risk of bleeding and bruising. To help prevent bleeding:

• Use an electric shaver if you need to shave.
• Do not use dental floss or a hard toothbrush. Use a baby or soft toothbrush, and brush only your teeth and not your gums.
• Let your nurse know if you have any nosebleeds. Never pick your nose and avoid blowing your nose too hard.
• Watch for blood in your pee and poo. If there is blood in your pee, it will look tea-coloured or red; poo will look black and tarry or bright red. Please tell your nurse if you notice this.
• 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 helps to prevent heavy bleeding when your platelets are low.

Anaemia

Your red blood cell levels will be low at times during treatment. You may have:

• pale skin
• weakness
• low 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 and radiotherapy can make your mouth tender, sore or swollen, and may cause ulcers. This is called mucositis. Regular and thorough mouth care can help to prevent or reduce it, and lower the risk of mouth infections. Your nurses will show you 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.

Photo courtesy of Canva.com

Feeling sick or being sick

These are common side effects of having chemotherapy and radiotherapy. Anti-sickness medicines usually help a lot. The chemotherapy nurses and pharmacist will talk to you about this before treatment and during your hospital stay.

Diarrhoea (loose poo)

This is a common side effect of chemotherapy and radiotherapy. Your doctor or nurse can give you medicine to help with it, so tell them as soon as it starts.

Alopecia (hair loss)

Some chemotherapy drugs cause hair loss. You may lose hair on your head, eyebrows, eyelashes, underarms and pubic area. This is temporary. Hair usually starts to grow back five to eight weeks after treatment starts, but it may look or feel different at first.

Hair loss can be upsetting. It may fall out in clumps, especially when brushing or being rubbed against your pillow. Some people let it 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 and headwear, you can see a wig adviser at the Macmillan Support and Information Service. Your nurse can also arrange for the wig adviser to visit you on the ward.

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

Fertility

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

• For women:
  You may be able to save your eggs, depending on your condition and past treatment. Eggs will need to be collected before chemotherapy and can be stored at UCLH. After the transplant, some women may experience early menopause and may need hormone-replacement therapy (HRT). Your doctor and fertility or hormone specialists will talk to you about this at your post-transplant clinic appointment.
• For men: 
  You can store sperm at UCLH before treatment.

You can expect to stay in hospital for about three to four weeks from the start of your treatment until you go home after your transplant. You may need to stay longer if you get 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 help your bone marrow start making 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 leave.

Some people can have the first part of their treatment in the Ambulatory Care Unit instead of staying on the main ward. Your nurse or doctor will check if this is suitable for you.

If it is, you will have your treatment in Ambulatory Care during the day and stay in a nearby hotel at night.

The Ambulatory Care Unit is in the University College Hospital Macmillan Cancer Centre. You can expect the same high standard of care as you would on a ward. You will have 24-hour access to expert nursing and medical advice. And if you ever need to be admitted to hospital, we can arrange this straight away. A companion or carer can stay with you and we will do our best to plan your care around your needs.

Ambulatory Care helps you keep as much independence and normal routine as is possible during treatment. Your healthcare team will decide with you when it is the right time to move to the main ward if needed.

For more information, please visit our Ambulatory Care web page.

If you feel unwell while staying in the hotel, contact the hospital straight away.

Please do not wait until the morning to be seen in Ambulatory Care.

We will give you all the contact numbers you need when you are admitted.

Your daily routine will depend on your 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 your questions. Your consultant on duty will see you twice a week, usually on Tuesday and Friday.

• PICC check:

  We will check your PICC for any 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, your usual skin bacteria can cause infections. For this reason, good personal hygiene is essential. Handwashing after using the toilet is especially important. You and your visitors should wash hands well and use alcohol gel provided around the unit. This is one of the best ways to prevent infection.

There are no set rules about what to do and what to avoid before your transplant. The steps below can help your treatment go smoothly:

• Attend your scheduled hospital appointments.
• Try to stay as well as you can. Avoid people (including children) with coughs, colds and contagious illnesses, such as chickenpox. Tell your CNS straight away if you do develop any signs of infection or a cold. We need to make sure that you are as well as you can be before you start your transplant.
• Have a dental appointment before treatment to check for any cavities or dental infections. Your dentist can contact us if needed.
• Eat a healthy diet and drink at least two litres of fluid a day, such as water, squash or juice. This is in addition to your usual cups of tea and coffee.

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, please visit our page Recovery following an autologous stem cell transplant.

Stem cell transplant CNSs
Tel: 020 3447 7359 (Monday to Friday, 9am to 5pm)

Out of hours for urgent medical advice
Tel: 07852 220900

Macmillan Cancer Support
Offers information, support and advice for anyone affected by cancer.
Tel: 0808 808 00 00

Blood Cancer UK
Supports anyone worried about blood cancer with expert information and advice.
Tel: 0808 2080 888

Anthony Nolan
Offers support for people with blood cancer who need a stem cell or bone marrow transplant.
Tel: 0303 303 0303

Cancer Research UK
Provides information about cancer and clinical trials.
Tel: 0303 303 0303

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