Stem cell or bone marrow transplants for acute myeloid leukaemia (AML)

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

Having a transplant means destroying as many leukaemia cells as possible and replacing these with healthy stem cells. You first of all have chemotherapy and other treatments such as radiotherapy. This prepares your body for the healthy stem cells . You then have the transplant of stem cells. These stem cells make their way to the bone marrow . Here they make the blood cells you need to recover.

Most people with AML have stem cells or bone marrow from someone else. This is called a donor transplant. Some people have a transplant using their own stem cells, but this is more unusual.

Why might you have a transplant?

Your doctor might suggest a transplant if your AML:

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

• has come back (relapsed AML)

• is resistant to treatment (refractory AML)

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 3 different types of blood cells. They are:

• red blood cells - contain haemoglobin and carry oxygen around the body
• white blood cells - part of your immune system and help fight infections
• platelets - help clot the blood and stop 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.

Donor transplant

In AML, you usually 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)

Autologous transplant

Your doctor might recommend using your own stem cells. This is called an autologous transplant.

The rest of the information on this page is about having an allogeneic transplant.

How do allogeneic 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:

• full intensity (myeloablative) conditioning (MAC)

• reduced intensity conditioning (RIC)

For full intensity 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 ).

Full intensity conditioning kills all the leukaemia cells and healthy cells in your bone marrow. Reduced intensity conditioning with lower doses means that some leukaemia cells and healthy cells are left behind. Both types of conditioning make space in your bone marrow for the donor stem cells and dampen down your immune system . This prepares your body for your transplant so it doesn’t reject the donor cells.

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

Recovering from your transplant

Your donor stem cells find their way into your bone marrow where they make the blood cells you need. 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. 

You have regular blood tests to check when your bone marrow starts to make new blood cells.

While you recover you continue to have treatment for any side effects and symptoms. This might include:

• antibiotics and antiviral medicines to treat and prevent infection

• platelet transfusions if the number of platelets in your blood is low

• blood transfusions if your red blood cells are low

• medicines to relieve a sore mouth, diarrhoea and sickness

• medicines to dampen down your immune system

One of the main problems with waiting for your blood counts to come up is that you’re at a very high risk of developing an infection. For this reason, you stay in hospital in a room on your own until your blood counts are high enough for you 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.

Your healthcare team might refer to this as being in isolation. Your team will monitor you closely and come into your room regularly. They just take special precautions when they come into your room. It doesn’t mean you can’t have visitors, but they 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. 

Chimerism tests

Your doctor measures the proportion of cells that are from your donor. After having a RIC, it is normal at first to have some of your donor stem cells and some of your own cells. This is called mixed chimerism. Eventually, all your blood and bone marrow should ideally be from your donor. This is called full chimerism. 

You have tests to check for chimerism every few months for about a year after your transplant.  

Donor lymphocyte infusion (DLI)

Lymphocytes are a type of white blood cell. They are part of the immune system.

You might have some of your donor’s lymphocytes as a drip into your bloodstream. Increasing the amount of donor cells helps the immune system get rid of any of your remaining cells. So eventually you have full donor chimerism. You are more likely to need donor lymphocyte infusions if you have a transplant following RIC. Some people might need quite a few of these infusions. Other people may not need any. 

Some people might have DLI if their leukaemia comes back (relapses). This can help boost your immune system to help the donor cells fight and supress the leukaemia cells.  

You usually have donor lymphocyte infusions after you go home and as an outpatient. 

Side effects

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 nosebleeds

These symptoms are 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. It can help to:

• avoid fatty and fried foods

• eat small meals and snacks more often

• take regular sips of water

It is important to take anti sickness medicines as prescribed even if you don’t feel sick. It is easier to prevent sickness rather than treating it once it has started.

Graft versus host disease (GvHD)

If you have had a transplant from a 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 thinning or loss

You might lose some or all your hair with AML 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 get someone else pregnant after having a stem cell transplant for AML. Talk to your doctor before starting treatment if this is a concern for you. They could explain how this could affect you.

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.