Stem cell transplants

If you need a donor transplant, the cells are collected from a close relative or an unrelated donor. This type of transplant is a complex procedure and can be subdivided into the following:

• Sibling: The donor stem cells are from a brother or sister. Each of your siblings has a 1 in 4 chance of being a match with you.
• Syngeneic: The donor stem cells are from an identical twin.
• Umbilical cord: The donor stem cells are taken from a related or unrelated umbilical cord.
• Haploididentical: The donor stem cells are from a parent or sibling that will only be a 50% match. This is not a common type of transplant.
• Unrelated: Stem cells are taken from a matched or partially mismatched donor that has been found on a donor panel and closely matches your tissue type.

Usually, when an allogeneic transplant is needed, parents and siblings will be tested to see if their tissue type is a match. Each sibling has a 1 in 4 chance of being a match. If no suitable match is found within the family, the charity Anthony Nolan will search for a potential donor match. This search will include the UK stem cell register, which the Anthony Nolan charity runs, as well as international donor registries.

Tissue typing or human leukocyte antigen (HLA) testing is done to match patients with donors. HLAs are proteins found on most cell surfaces in the body. They are genetic markers which make you an individual, like fingerprints. The immune system uses HLAs to recognise which cells belong in our bodies and which ones don’t. They also help protect the body against organisms such as bacteria and viruses. It is important to have a close HLA match with the donor so that the immune system does not attack the donor cells (graft rejection) and the donor’s immune cells do
not attack your body after the transplant (graft versus host disease).

If your sibling is considering becoming a donor, we have a booklet which may be helpful. Download or order the free booklet  'Donating your stem cells to your brother or sister'.

Traditionally, the stem cells were obtained from bone marrow, but now we can obtain them from other sources within the body:

Bone marrow - stem cells can be taken from the bone marrow with a large needle — usually from the back of the pelvis while the donor is under a general anaesthetic. This is called a ‘bone marrow harvest’.

Peripheral (or circulating) blood - the donor is given a drug called a 'growth factor' to trigger the bone marrow to produce extra stem cells. The stem cells move into the circulating blood. Using a cannula, the donor is attached to a machine which collects the stem cells from the blood. This is called a peripheral blood stem cell harvest (PBSC harvest).

Umbilical cord stem cells - Stem cells can be collected from umbilical cords at the time of delivery of a baby. This is not currently available everywhere in the UK, but pre-arranged collections can be done where it is known that the baby is a compatible match for their affected sibling. Stem cells from unrelated cord units may also be used. Only a limited amount of stem cells can be collected from the cord blood.

Giving consent

Before a transplant can start, it is important to understand what is going to happen, and consent for the treatment must be given.

In the UK, teenagers aged 16–17 years, or their parents, can consent for treatment. However, it is important to include parents and carers in decision making when undergoing complex treatment such as a transplant. Young adults who are aged 18 years and over can consent themselves.

Before giving consent, you should receive information about:
• the benefits and risks of treatment
• implications of not having the transplant
• what the treatment will involve
• whether there are any other treatment options
• what the longer-term effects will be of having, or not having, the transplant

Having a central line

If you don't already have a central line, you will need to have one inserted before having a transplant. This allows blood to be taken regularly, and blood products and medication to be given as needed. Your SCT coordinator can explain more about this.

Prehabilitation

There may be ways to prepare for your transplant by improving general health through nutrition and exercise. This is called prehabilitation. Suggested prehabilitation is different for each person, and will depend on your disease type and stage, what treatment you have already had, and symptoms and side effects you have experienced. Please talk to your team if you would like to find out more about this.

Tests and scans

Several tests are usually needed before the transplant takes place:

• Blood tests - this includes virus testing
• Bone marrow aspirate/trephine - to check disease status
• Echocardiogram (Echo) - ultrasound of the heart to check how well it is working
• Dental check - to avoid infection from dental cavities
• Kidney function - to check how well the kidneys are working
• Lung function - to check how well the lungs are working
• Hand x-ray - to assess bone age in relation to chronological age, as a baseline for growth monitoring 
• Pregnancy - females who have reached puberty will be asked to have a pregnancy test
• Sperm cyropreservation - males aged 13 or over can discuss this with their transplant consultant

Stem cell transplant treatment includes 'conditioning treatment' which is given first to prepare the body to receive the stem cells from a donor. The donor cells are then given. It takes several weeks for the new stem cells to begin working.

The conditioning treatment (high-dose therapy to prepare you for a stem cell transplant) takes place approximately 7–10 days before receiving the stem cells, depending on whether you have a related or unrelated donor and will mean being an staying in the stem cell transplant unit.

Strong chemotherapy drugs are given through the central line in order to destroy the bone marrow. 

Some people need to have radiotherapy treatment to the whole of the body which also destroys the bone marrow – this is known as total body irradiation (TBI). This may be done at a different hospital as not all hospitals have a radiotherapy unit. Your SCT nurse will discuss your individual treatments with you. 

The radiotherapy treatment usually takes place over one to four days and lasts around 20 minutes each time. During each session, you have to lie in the room alone and keep very still. Music and audio is usually allowed which may help to pass the time.  The radiotherapy team closely monitor what is happening on a screen and through audio. Staff and family members can communicate through CCTV. The radiotherapy treatment does not hurt but may cause nausea (feeling sick). Anti-sickness drugs are given to help prevent this. It may also cause a sore throat and diarrhoea.

As the conditioning treatment affects the cells which fight infection, you will stay in a single room, isolated from other patients on the ward. The rooms in the stem cell transplant unit have high pressure filters which clean the air and so help to prevent the spread of infection.

When the bone marrow is destroyed by the conditioning treatment, it cannot make blood cells. You will need transfusions of red cells and platelets. White blood cells are not routinely transfused post-transplant so, as they destroy germs, it is important to stay protected during this stage. You will be given medicines to help prevent infection. Most people do develop infections following stem cell transplant, but you will be closely monitored so that any infections can be treated quickly.

The conditioning treatment can also affect other cells in the body causing side effects. Measures are taken to prevent these side effects as much as possible and whilst some people may be affected mildly, others will feel extremely unwell. Although these treatments can have significant side
effects, they are the only way to destroy the bone marrow effectively, which is important for the new cells to work.

Before being given the stem cells, your central line will be checked and you may be given medicines to prevent nausea and an allergic reaction.

The stem cells are given as a transfusion (just like a blood transfusion) through the central line. This may take between fifteen minutes and two hours depending on the amount being given. The amount of stem cells needed is calculated from the weight of the person receiving the transplant. 

You will have your blood pressure, pulse and temperature monitored during the transfusion to watch for an allergic reaction. This can be treated with drugs if it occurs.

The new cells enter the bloodstream and in the next few hours make their way to the empty bone marrow created by the conditioning treatment. Once they are in place they gradually begin to produce blood cells – this is known as engrafting.

The new cells will take two to four weeks before they make enough white cells in your body to fight infection. You will not have enough to fight major infections, in particular viral infections, for at least six months. 

You may still need transfusions of red blood cells and platelets even after going home, but eventually the stem cells will produce enough blood cells of its own. The whole transplant process from the beginning of conditioning treatment to the time when your body has enough white cells to fight infection can take six to eight weeks, with a further three to six months before the bone marrow is working fully. For an allogeneic transplant, recovery may take up to a year.

It is important to stay protected during transplant treatment. The restrictions and recommendations we have included below are for donor transplant patients, but many of these will also be in place for self (autologous) transplant patients as well. Talk to your SCT coordinator, keyworker or CNS about what is applicable to your individual situation.

Staying in isolation

You will stay in a single room that has been specially cleaned. This is called ‘isolation’ and will help to protect from infection. The room has a filtered clean air system and anything taken into the room is cleaned first. The windows are closed to prevent unfiltered air getting into the room and the door is kept closed when not in use. Each day the room will be thoroughly cleaned and the bed linen changed. You will have to stay in the room until there are enough white cells in the blood to protect from infection. This takes between about two and four weeks. 

Visiting from friends and family

During the time spent in isolation your contact with friends and family will be limited. Only named visitors will be allowed to visit, together with the stem cell transplant unit staff. Visiting restrictions vary from unit to unit. Named visitors should be adults but if you are unsure, ask your SCT coordinator. By taking turns with other named visitors, parents (or other relatives) can have a break. Some transplant units allow other visitors, especially brothers and sisters, who do not enter the room but will be able to communicate from outside. Keeping in touch with friends and family via messaging, phone and social media during the time in hospital will help to reduce feelings of isolation. It is now easier than
ever before to keep in touch with friends via text, phone and social networking sites and it is helpful to maintain this contact.

Hand washing

Hand washing is the most important way to prevent the spread of infections. All visitors must wash their hands thoroughly when they enter the unit. The nursing staff at the hospital will explain good hand washing technique and the use of alcohol gel. 

Looking out for infection

You will be checked regularly for signs of infection. A high temperature is often the first sign of infection. Despite all the measures taken, all transplant patients will develop some kind of infection, often caused by the normal bacteria living in the body, which in healthy people do not cause any problems. When infection happens, you will be given antibiotics through your central line. Urine and poo specimens will
be sent to the laboratory to check for infection as well. 

Monitoring blood counts

If red blood cells or platelets are low, you may be given a transfusion. Red cells may only need transfusing a few times but platelets will need transfusing more often. When your white cells are high enough to provide protection from infections, isolation rules can be relaxed and when you are well enough, discharge to home will be organised. Some isolation restrictions to protect from infection may continue for about 3-6 months. Blood counts vary from day to day, and for each person, and will not return to normal for many months.

Other medicines to help

You will need to take several medicines to help the new cells work and help prevent infection. Your doctor or nurse will explain what medicines are needed and how they work. 

Looking after the mouth

The mouth is a prime site for infection so it is important to be careful with oral hygiene during transplant. Your mouth will be checked regularly so that any problems can be treated as quickly as possible. 

Diet and eating

While infection risk is high, you will not be able to eat or drink certain foods and some things must be specially prepared. Many people do not feel like eating due to loss of appetite, nausea and sore mouth. This is common and you may need other feeding methods containing necessary calories and nutrients, such as a nasogastric tube (NG tube), or intravenous feeding (TPN). It may take time for your appetite to return to normal.

Emotional issues

Your behaviour and mood often change during a stem cell transplant. Feeling unwell and being away from the secure and familiar environment of home will add to this. Some drugs can cause changes in mood: feelings of anger, depression, irritability and being withdrawn are common. This can be very difficult for you and your loved ones to cope with. Talk to your team about any problems or worries so that they can help and give guidance. As recovery progresses and life becomes more normal, these issues generally get better, although it may take some time.

Stem cell transplant is an intensive form of treatment which can result in serious side effects and complications. These are outlined below and will be discussed with you fully when you speak to the transplant consultant and transplant coordinator/ clinical nurse specialist prior to admission.

Nausea (feeling sick) and vomiting (being sick)

The conditioning chemotherapy or radiotherapy may cause nausea and vomiting. This can be helped with anti-sickness medicines. Tell the team if this is not controlled, as changing the medicine often helps.

Hair loss

Chemotherapy and radiotherapy usually causes your hair the hair to fall out two to three weeks after the beginning of treatment. Your hair will grow back normally but can take some time. Some people are very upset by hair loss; others cope extremely well. The nursing staff will help you with this as much as possible. If you would like a wig, these can be provided. Some people want to wear scarves or hats and others prefer not to cover their head at all.

Diarrhoea 

Some drugs may give you diarrhoea, and anti-diarrhoea medicine may be needed. It is important to drink plenty of fluids to avoid becoming dehydrated.

Muscositis

Chemotherapy drugs can affect all the cells in the digestive tract – from inside the mouth (causing soreness and ulcers), right through the gut (causing abdominal cramps) and down to the rectum (causing a sore bottom). This condition is called 'mucositis'. This happens because the cells in the protective lining reproduce quickly, so they are targeted by chemotherapy. This makes them irritated, inflamed and swollen, sometimes with patches of pus where it becomes infected. Symptoms in the mouth can be prevented, or reduced, with good oral hygiene. That’s why mouth care is very important during transplant. Mouthwashes, numbing sprays, protective gels and painkillers can help. Some hospitals offer photobiomodulation. This is a type of light or laser treatment that can help prevent or reduce the severity of mucositis. It is important to check the mouth regularly so that any problems are treated as quickly as possible.

Sensitive skin

Conditioning treatments can cause skin rashes, sore patches or a change in skin colour. They may also make your skin more sensitive to products like scented soaps or body wash. Your skin will also be more sensitive to the sun. It’s important to always protect your skin by wearing a hat, loose clothing and sunglasses. Use sunscreen with at least sun protection factor 50 (SPF50) on any exposed areas. Your SCT team can advise on how best to care for skin rashes or sore patches.

Infection

You will be at risk of infection following stem cell transplant. This includes bacterial, fungal and viral infections. Infection is a very common problem in SCT and can usually be easily treated with antibiotic, antiviral or antifungal drugs. Infections can be more difficult to treat, and may in some instances be life threatening, but this is rare.

Growth

Irradiation and chemotherapy can affect long term growth. This will be carefully monitored post-transplant. If necessary, growth hormone treatment can be given.

Graft versus host disease (GvHD) - donor transplants only

GvHD can only occur if you have received stem cells from a donor (allogeneic transplant). As the stem cells begin to engraft, sometimes they recognise they are in a different body and react to this. This may cause redness of the skin on the palms of the hands and on the feet, diarrhoea and liver problems. This is known as graft versus host disease (GvHD), i.e. new donor stem cells versus recipient receiving stem cells. This is usually mild as drugs are given to prevent this occurring, but in some cases it can become very severe and even life threatening. If this happens you will be given drugs to treat the GvHD and it does not mean that the transplant has failed.

For more information, download or order our free factsheet on graft versus host disease.

Sinusoidal obstructive syndrome (SOS)/Veno-occlusive disease (VOD)

This can be a serious complication that can be caused by some conditioning treatments and affects the how the liver works. It usually happens within the first 30 days of the transplant. It is not common. It is usually a temporary problem, but it can cause long-term issues. There are several circumstances which may make it more likely for VOD to occur. Doctors will assess individual risk and, if necessary, give drugs to prevent it. For more information, download or order our free factsheet on veno-occlusive disease.

Haemorrhagic cystitis

This is where there is blood present in the urine and can cause pain. This occurs with certain conditioning treatments or can be a result of various viruses and can happen anytime up to three or four months post-transplant. It can be treated.

Fertility

Some chemotherapy and radiotherapy treatments are likely to affect fertility. For females, this means that it may be harder for them to become pregnant in the future. For males, this means that their sperm is less fertile, which can affect their chance of having children in the future. There may be some treatments available which aim to maintain fertility, including sperm banking and eggs, embryos or ovarian tissue storage. If you would like more information about these, please discuss with your medical team. Referral to a fertility specialist will be available in the future, when thinking about starting a family. We have more information on fertility and cancer treatment for teenagers and young adults.

Cataracts

Radiotherapy can cause cataracts. This is blurring of the vision caused by clouding of the lens in your eye. This can be corrected by surgery and replacing the lens with an artificial one.

Your transplant team will decide when you are medically fit to be able to go home. This will depend on your blood counts, and whether you can take fluid, food and medicines either by mouth or NG tube.

It is normal to feel anxious and frightened about going home. The medical team will prepare you as best they can and arrange for you to be able to call the hospital easily with any problems. It is also important for you and your loved ones to learn to live together again after the separation that hospitalisation has brought. Psychological or social work support may be needed after discharge, so it is important to ask for this either on the phone or at clinic appointments.

Getting your home ready

As in hospital, it is important to maintain good general hygiene and a clean environment at home. Bathrooms and toilets should be cleaned daily. Floors and carpets should be cleaned at least weekly. Kitchen surfaces should be cleaned before and after use, and crockery and cutlery washed in a dishwasher or hot soapy water. Your clothes should be washed regularly and can be washed with other people's washing. Bedding and towels should be washed at least weekly. 

The risk of certain infections continues for some time. It is important that no building work is undertaken during the first 12 months after returning home. This is because aspergillus (fungal) spores can be found in bricks, concrete and dust. Air conditioning can also harbour aspergillus spores so it is best avoided. 

Personal hygiene

When you are immunosuppressed, common microorganisms found on your skin may cause problems. It is important to wash daily, by having a shower, bath or strip wash. Mild hypo-allergenic moisturisers may be used on dry skin. It is also very important to wash hands before meals and after going to the toilet. Teeth should be cleaned twice daily. Toothbrushes should be changed monthly and stored separately from those used by other members of the household. Underwear should be changed daily and clothes changed regularly.

Body or ear piercing is not recommended for 6–12 months post-transplant. Tattoos should not be considered for at least two years post-transplant. Please check with your transplant team before having any body piercing or tattoos. 

Protection from the sun

It is important to protect your skin and head after a transplant, especially after having had TBI or GvHD. Where possible, keep covered up with clothes. Always use a sunscreen SPF factor 50 with a UVA 5-star rating and use as recommended.

Contact with infectious diseases

It is important to let your SCT team know about any direct contact with, or any symptoms of, the following:

• Chickenpox - due to being immunosuppressed, there is still a risk of catching chickenpox even if you have had it previously. It may be necessary to go into hospital for IV antiviral medication.
• Shingles - this is a reactivation of the chickenpox virus and is usually seen as a rash on the head, neck or body and can be very painful. This sometimes requires readmission for IV antiviral medication.
• Measles - although uncommon in the UK, fewer people are now having the MMR vaccine so there may be a low risk. he first symptoms may be a fever or runny nose before a rash develops. It may be necessary to be admitted to hospital for observation and antibiotics.

Sleepiness after radiation

After having TBI, it is not unusual to experience a period of sleepiness or lethargy, sometimes with fever and headaches as well. This is called somnolence and usually occurs 6–8 weeks after transplant, lasting up to two weeks. It is important to drink plenty of fluids during this period.

What to eat

After transplant, it is important to have a good diet to help recovery. Your transplant team understands that this may be difficult and will advise which foods are allowed to be eaten while immunosuppressed. They will also monitor weight and gut symptoms during recovery. Having TBI as part of the transplant process can cause a dry mouth for a few months, so drinking more is important when eating. Having chemotherapy and TBI can cause some foods to taste different.

Feeling tired

Most people feel tired after their transplant, particularly if they do physical activity or try to concentrate. This generally improves with time, and it is important to take things slowly and rest when needed. It may take up to 12 months to get strength back to normal. Despite feeling tired, it is important to try and exercise a little each day, gradually building up to increase stamina. 

Medicines to take at home

After leaving hospital, there will be several medications to continue to take. Full instructions will be given by your SCT team. The drugs are likely to include:
• immunosuppressive drug(s) e.g. ciclosporin, MMF, tacrolimus, with or without steroids
• antifungal medication – usually itraconazole
• antiviral medication – usually acyclovir
• PCP prophylaxis – septrin/pentamidine
• lansoprazole – to treat reflux/dyspepsia
• penicillin – to protect from infection
• loperamide – to treat diarrhoea

Going back into hospital

It may be necessary to go back into hospital for a while for the following reasons:
• infection – commonly central line related
• reactivation of viruses – CMV (ganciclovir)/Herpes zoster (acyclovir)/adenovirus (cidofovir)
• GvHD may cause nausea/vomiting/diarrhoea/weight loss
• respiratory complications, e.g. pneumonia
• weight loss/poor appetite

Clinic appointments

When being discharged, you will be told when to return to clinic. You will need to be closely monitored initially, and appointments will probably be at least weekly until immunosuppressive drugs are stopped. At clinic reviews, the doctor will check for any problems or signs of graft versus host disease. Your weight, blood pressure, temperature and pulse will be checked, and sometimes oxygen saturations. Do not take ciclosporin, MMF or tacrolimus, in the morning until blood has been taken to check levels. Avoid grapefruit or any foods containing grapefruit when taking ciclosporin as this can affect levels.

Things to watch for

In between clinic visits, it is important to tell your transplant unit if any of the following develop:
• temperature of 38˚C or above
• episodes of shivering (rigor) or shaking
• any bruising or petechiae (blood spots) or rashes
• any redness, swelling or discharge from the central line
• shivering (rigor) or shaking after central line or Portacath is flushed
• persistent or troublesome cough
• shortness of breath
• frequent diarrhoea or vomiting
• abdominal pain or cramps
• mouth ulcers or thrush
• feeling unwell or off colour
• any contact with chickenpox, measles, shingles

Following a donor cell stem transplant, it can take a long time for full immunity to return. This period is very individual. Your team will be able to tell you when it is safe to return to normal activities.

What happens with my central line?

Each hospital may vary but central lines are usually kept in for a minimum of three months post-transplant. This allows the team to monitor bloods without having to access veins and also to give blood and platelets if required. Once the line is no longer used regularly, the transplant team will discuss removing the line with you. This will involve a short anaesthetic and minor procedure.

Seeing friends and family

Many friends and family will probably want to visit you but it is important that any visitors do not have a high temperature, coughs, colds, sore throats, vomiting, diarrhoea, cold sores or generally feel unwell. It is best to have minimum contact with a family member who is unwell. It may help to restrict the number of people visiting at one time.

Travelling on public transport and visits to crowded places, such as shopping centres and cinemas, should be avoided at peak times. Your SCT coordinator can give more advice about this.

Returning to school or college

It is not unusual to have at least six months off before returning to school or college. Home tuition is usually organised after discharge from hospital. It is likely that attention span will be affected initially and it is helpful to return gradually, for example, just a couple of hours per day, building up to half days, then full days.

For young adults returning to work

If you’re starting or returning to work following your transplant, it’s illegal for employers to discriminate against you. If you were working when you were diagnosed with cancer, you may be worried about your financial situation. There are organisations that may be able to provide support or advice about finances and employment, including Young Lives vs Cancer, Macmillan Cancer Support and Maggie’s Centres. 

Revaccination

Childhood vaccinations will need to be done again so revaccination is usually necessary after both autologous and allogeneic transplants. Your team will tell you what you need to do about this.

Being around pets 

If a pet is healthy, it is safe for it to stay in the home. The exceptions to the rule are reptiles and birds, which are best avoided. New pets should not be brought into the home of someone who is immunosuppressed. Always wash hands after contact with pets and avoid scratching and licking from them. Pets should not be kept in the bedroom and should not sleep on the bed. Immunosuppressed people should not clean out litter trays, rabbit hutches, aquariums etc. See our booklet 'Handling animals and pets' for more information

Holidays

Flying is not recommended within the first six months after transplant, and tropical countries where vaccinations are required should be avoided for at least 12 months. There are specialist insurers who will help you get travel insurance. Holidays within the UK are usually not a problem but it is a good idea to travel with a letter summarising care to date, and to contact a hospital near where you will be staying.
Please discuss any holiday plans with your transplant team or the consultant in charge of your care before booking. See our travel and vaccinations page for more information