Stem cell or bone marrow transplants for acute lymphoblastic leukaemia (ALL)

You might have a stem cell or bone marrow transplant as part of your treatment for acute lymphoblastic leukaemia (ALL).

A transplant allows you to have high doses of chemotherapy and other treatments. The stem cells are collected from the bloodstream or the bone marrow.

Your doctor might suggest a transplant if your ALL:

• has features that show it is likely to come back (high risk)
• has come back (relapsed ALL)

What are stem cells?

Stem cells are very early cells made in the bone marrow. Bone marrow is a spongy material that fills the bones.

These stem cells develop into red blood cells, white blood cells and platelets. 

Red blood cells contain haemoglobin which carries oxygen around the body. White blood cells are part of your immune system and help to fight infection. Platelets help to clot the blood to prevent bleeding. 

What’s the difference between a stem cell transplant and a bone marrow transplant?

A stem cell transplant uses stem cells from the bloodstream. This is also called a peripheral blood stem cell transplant (PBSCT). A bone marrow transplant uses stem cells directly from the bone marrow.

In ALL, you have the stem cells from someone else (a donor). This is known as an allogeneic transplant or allograft.

You might have stem cells from:

• a brother or sister (sibling match)
• a person unrelated to you whose stem cells are similar to yours (matched unrelated donor or MUD)
• cord blood stem cells (umbilical cord)

How do transplants work?

Before the transplant you have treatment to prepare your body to receive the stem cells. You might hear this called conditioning treatment. 

There are two main types of conditioning treatment. These are:

• myeloablative conditioning
• reduced intensity conditioning (RIC)

For myeloablative conditioning you have very high doses of chemotherapy. With reduced intensity conditioning you have lower doses of chemotherapy. You might also have other treatments such as radiotherapy to the whole body (total body irradiation or TBI).

The treatment kills the leukaemia cells as well as the healthy cells in your bone marrow. This makes space in your bone marrow for the donor stem cells. It also dampens down your immune system so you don’t reject the donor cells.

After the conditioning treatment you have the stem cells into your bloodstream through a drip. The cells find their way back to your bone marrow. Your body then starts making blood cells again and your bone marrow slowly recovers.

Recovering from your transplant

You have very low numbers of blood cells for some time after your transplant. It takes a while for your bone marrow to start making blood cells again and for your blood counts to come up. Your doctors call this engraftment. Engraftment can take between about 2 to 3 weeks, but it can take longer. 

One of the main problems with this is it means you’re at very high risk of picking up infections. For this reason, you stay in hospital in a room on your own until you're well enough to go home. 

Your room usually has special air filters. These filters trap bacteria that might be in the air that could cause infection. Anyone who enters your room will have to follow strict infection control procedures.

It doesn’t mean you can’t have visitors, but your nurse may suggest limiting them to one or two each day. If your visitors are unwell they won’t be allowed to see you. They should also stay away if they have been in contact with someone who has an infectious illness.

Your nurse may suggest that family and friends contact you before visiting to make sure you feel up to it. 

You might have to follow a special diet including foods that are unlikely to give you an infection. 

There are other possible side effects of having a transplant. Not everyone will get them and the severity of each side effect will vary from person to person. You usually start to feel better as your blood counts recover. This is a short summary of some of the other possible side effects:

Breathlessness and looking pale

You might be breathless and look pale due to a drop in red blood cells. This is called anaemia. If your counts are very low or you have symptoms you might have a blood transfusion. 

Bruising, bleeding gums or nose bleeds

This is due to a drop in the number of platelets in your blood. These blood cells help the blood to clot when we cut ourselves. You may have nosebleeds or bleeding gums after brushing your teeth. Or you may have lots of tiny red spots or bruises on your arms or legs (known as petechiae).

If your platelet count is too low or you have symptoms you may have a platelet transfusion. 

Feeling or being sick

Feeling or being sick is usually well controlled with anti sickness medicines. Avoiding fatty or fried foods, eating small meals and snacks, drinking plenty of water, and relaxation techniques can all help.

Your nurse will give you anti sickness medicines regularly. 

Tiredness and weakness

You might feel very tired and as though you lack energy. This can last for a long time after a transplant. 

Various things can help you to reduce tiredness and cope with it, for example some gentle exercise, even if it's walking around your room to begin with.  

Graft versus host disease (GvHD)

If you have had a transplant from a relative or a matched unrelated donor, you are at risk of GvHD. This is because the stem cells contain immune cells from the donor. These cells can sometimes attack some of your own body cells. Symptoms of GvHD include:

• diarrhoea
• weight loss
• yellowing of the whites of the eyes and skin (jaundice)
• skin rashes
• shortness of breath

Let your nurse or doctor know if you have any of these symptoms.

Hair loss

You lose all your hair with ALL treatment. This includes your eyelashes, eyebrows, underarm, leg and sometimes pubic hair. Your hair will usually grow back once treatment has finished but it is likely to be softer. It may grow back a different colour or be curlier than before. 

Sore mouth and ulcers

Mouth sores and ulcers can be painful. Here are some useful tips to help:

• Keep your mouth and teeth clean.
• Drink plenty of fluids.
• Avoid acidic foods such as oranges, lemons and grapefruits.
• Chew gum to keep the mouth moist.

Tell your doctor or nurse if you have ulcers.

Loss of fertility

You are at higher risk of not being able to get pregnant or father a child after having a stem cell transplant for ALL. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.

Coping

Being in isolation is tough. Staying in a single room in hospital can feel lonely and people often get bored easily. Some people find it frightening. It can help to talk to the nurses about your worries. 

Taking in some of your personal things can make the room feel more homely. You can also take in your mobile phone, laptop, tablet or music. This can help the time to pass and you can keep in touch with your friends and family.

During your transplant you’re likely to feel physically and mentally exhausted. The treatment is very intense and will affect different parts of your body. Don’t be hard on yourself as it's normal to feel like this. This is also expected to last sometime after your transplant. There are things you can do to keep yourself physically active as possible. Here are some tips:

• Get into a routine - it’s easy to just lie in bed all day and stay in your pyjamas. Aim to get dressed and washed by a certain time. This will help you feel fresh and motivated.

• Try to sit out of bed in a chair at mealtimes instead of propped up in bed.

• While you are in hospital you may see a physiotherapist. You can set-up a program together of safe gentle exercises you can do even while in isolation. You can also use this when you go home.

• If you’re feeling up to it, set a goal and take several walks around your room a few times a day. You can build this up to longer walks when you go home.

Keep your mind active. There will be times when you struggle to concentrate and focus. This is normal. Try to do a variety of things to keep yourself occupied such as:

• jigsaw puzzles

• books to read

• puzzle books

• creative hobbies you might have

Most importantly, listen to your body. Don’t be hard on yourself if you are having an off day or are too unwell to complete the above tasks that day.