Stem cell 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). Having a transplant means destroying as many leukaemia cells as possible and replacing these with healthy stem cells.

You have chemotherapy first and you might have 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.

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

Why might you have a transplant?

Your doctor might suggest a stem cell transplant if your ALL:

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

• has come back (relapsed ALL)

• is resistant to treatment (refractory 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 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.

Stem cell transplants are more common than bone marrow transplants. This is because:

• it's easier to collect stem cells from the bloodstream than the bone marrow

• your treatment team can usually collect more cells

• your blood cell levels usually recover faster

What is an allogeneic transplant?

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

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)

Ideally, your donated stem cells need to match your own. A brother or sister is most likely to be a close match.

If you don't have a brother or sister who is a match, you can have stem cells from a matched unrelated donor transplant. 

Some people might have stem cells that are not a perfect match (but partly match). This is called a mismatched transplant. 

Stem cells from a donated cord blood is an option for some. In some hospitals, women can donate their umbilical cord following birth. The blood it contains is rich in stem cells. Adults are less likely to have stem cells from cord blood.

Having a stem cell transplant

There are different stages of an allogeneic transplant.

Preparation

To prepare for your transplant, you have:

• various tests

• a central line

Central line

A central line is a long plastic tube that goes into a large vein near the heart. They can be used for taking blood samples and giving medication. The central line can stay in for many months. So you don’t need to have needles in your hand or arm each time you have treatment.

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.

Conditioning treatment

Before the transplant you have treatment to prepare your body to receive the stem cells. You might hear this called conditioning treatment. What you have depends on your individual circumstances. There are also different strengths of conditioning treatment.

There are two main strengths of conditioning treatment:

• full intensity conditioning (myeloablative or MAC)
• reduced intensity conditioning (RIC)

Myeloblative conditioning (MAC)

You have very high doses of chemotherapy with myeloblative conditioning. And all of the cancer cells and healthy cells are destroyed. 

As well as chemotherapy, you might also have:

• targeted cancer drugs

• radiotherapy to the whole body (total body irradiation or TBI)

You usually have TBI at the beginning or at the end of your chemotherapy.

Reduced intensity conditioning (RIC)

With RIC you have lower doses of chemotherapy. Some healthy cells and leukaemia cells are left behind after treatment has finished.

You might have RIC if:

• you are not fit and well enough for full intensity conditioning
• you are older, for example over 40 years of age

You may also have targeted drugs with your chemotherapy.

RIC can have fewer side effects. But there is a greater risk of the cancer coming back, compared to MAC. Even though the doses of chemotherapy are lower, this can still be a difficult treatment to cope with. Your healthcare team monitor you closely through your treatment and when you go home. 

Conditioning treatment can take about 7 days. But it could be shorter or longer depending on the drugs you have.

Collection of donor's stem cells

Donors usually have stem cells collected from their bloodstream. When this happens, your donor has growth factor injections once a day for 4 days. The growth factor makes the stem cells spill out into their bloodstream. When there are enough stem cells, these are collected through a drip from their bloodstream.

Some donors have stem cells taken from their bone marrow. Your donor has a general anaesthetic for this. A doctor then puts a needle into their hip bone to remove the bone marrow. 

The Anthony Nolan charity has more information for donors and what is involved.

You have your donor's cells

After you have your chemotherapy and other treatments you have your donor’s stem cells. You have these through your central line into your bloodstream.

Blood count recovery

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.

You have regular blood tests to check when your bone marrow starts to make new blood cells. The time it takes for the new blood cells to appear (and blood counts to recover) can vary. This may take a few weeks, although it can vary from person to person.

During this time, 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 are low

• blood transfusions if your red blood cells are low

• medicines to relieve a sore mouth, diarrhoea and sickness

• medicines to dampen your immune system

Recovering from your transplant

One of the main problems with having a low blood count is that you have a higher 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.

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

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 donor lymphocyte infusions 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 of transplants

There are 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.

The most common side effects include:

• an increased risk of getting an infection
• breathlessness and looking pale
• bruising, bleeding gums or nosebleeds
• feeling or being sick
• watery poo (diarrhoea) and weight loss
• tiredness and weakness
• graft versus host disease (GvHD)
• hair loss
• sore mouth and ulcers
• loss of fertility

Increased risk of infection

Your doctor and nurse will talk to you about what you can do to lower your risk of getting an infection. This might include:

• taking medications to prevent infection
• avoiding certain foods that are known to increase the risk of infections
• avoiding crowded places with lots of people
• avoiding anyone who has come into contact with an infectious disease, such as chickenpox or the flu

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

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. If you're feeling up to it, gentle exercise can help, 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)
• sore eyes or mouth
• skin rashes
• shortness of breath
• a high temperature (fever)

Your healthcare team will monitor you for any signs of GvHD. 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.