Acute lymphoblastic leukaemia information centre
What is leukaemia?
Leukaemia is a cancer of the white blood cells. White blood cells are produced by the bone marrow. The four main types of leukaemia are: acute lymphoblastic (ALL), acute myeloid (AML), chronic myeloid (CML) and chronic lymphocytic (CLL). Each disease has its own characteristics and treatment.
The bone marrow
Bone marrow is a spongy material that fills some of the bones and produces the cells (called stem cells) which develop into the three different types of blood cells:
- red blood cells, which carry oxygen to all cells in the body
- white blood cells, which are essential for fighting infection
- platelets, which help the blood to clot and control bleeding
All these cells normally stay inside the bone marrow until they are mature enough to perform their functions properly. They are then released into the bloodstream so that they can circulate around the body.
The bone marrow produces two main types of white blood cell: lymphocytes and myeloid cells (also known as granulocytes). These cells work together to fight infection. As some myeloid cells and some lymphocytes only live for a few days, the bone marrow is constantly making new cells to replace the old ones in the blood.
When they are mature enough to leave the bone marrow, the white blood cells are released into the bloodstream to circulate around the body. Lymphocytes, unlike the myeloid cells, also circulate in the lymphatic system.
The lymphatic system is one of the body’s natural defences against infection. It is made up of a collection of small lymph nodes (sometimes called glands) which produce lymph, a milky-looking fluid containing lymphocytes. The lymph nodes are found mainly in the neck, armpit and groin and are connected by a network of tiny lymphatic vessels. The tonsils, liver, spleen (which breaks down old blood cells) and bone marrow also contain lymphocytes.
A diagram showing the main groups of lymph nodes in the body
What is acute lymphoblastic leukaemia (ALL)?
Acute lymphoblastic leukaemia is an overproduction of immature lymphocytes, called lymphoblasts (sometimes referred to as blast cells). Normally, white blood cells grow and divide in an orderly and controlled manner but in leukaemia the process gets out of control and the cells divide too quickly, but do not mature.
These immature cells fill up the bone marrow and prevent it from making blood cells properly. As the leukaemia cells do not mature, they cannot do the work of normal white blood cells, which leads to an increased risk of infection. Because the bone marrow is overcrowded with immature white cells it cannot make the right numbers and quality of red cells and platelets.
It occurs more frequently in children (under 15 years of age) than adults. When it occurs in teenagers or adults, ALL is most common between the ages of 15–25 and in people over 75 years of age. It is slightly more common in males than in females.
Your feelings
Most people feel overwhelmed when they are told they have leukaemia. Many different emotions arise which can cause confusion and frequent mood swings. You might not have all the feelings discussed below or experience them in the same order. This does not mean, however, that you are not coping with your illness.
These emotions are part of the process that many people go through in trying to come to terms with their illness. Partners, family members and friends often experience similar feelings and frequently need as much support and guidance in coping with their feelings as you do.
Reactions differ from one person to another -there is no right or wrong way to feel. Some of the common emotional effects are mentioned below. However, different people have different emotions at different times.
Shock and disbelief
‘I can’t believe it’/‘It can’t be true’
This is often the immediate reaction when leukaemia is diagnosed. You may feel numb, unable to believe what is happening or to express any emotion. You may find that you can take in only a small amount of information and so you have to keep asking the same questions over and over again, or you need to be told the same bits of information repeatedly. This need for repetition is a common reaction to shock.
Some people may find that their feelings of disbelief make it difficult for them to talk about their illness with their family and friends. Other people may feel an overwhelming urge to discuss it with those around them. This may be a way of helping them to accept the news themselves.
Fear and uncertainty
‘Am I going to die?’/‘Will I be in pain?’
Leukaemia is a frightening word surrounded by fears and myths. One of the greatest fears expressed by almost all newly diagnosed patients is ‘Am I going to die?’.
In fact, nowadays many leukaemias are curable if caught at an early enough stage. When a leukaemia is not completely curable, modern treatments often mean that the disease can be controlled for years and many patients can live an almost normal life during that time.
‘Will I be in pain?’ and ‘Will any pain be unbearable?’ are other common fears. In fact, many people with leukaemia feel no pain at all. For those who do, there are many modern drugs and other techniques which are very successful at relieving pain or keeping it under control. Other ways of easing pain or preventing you from feeling pain are radiotherapy and nerve blocks.
Many people are anxious about their treatment: whether or not it will work and how to cope with possible side effects. It is best to discuss your individual treatment and possible outcomes in detail with your doctor.
You may like to take a close friend or relative to the appointment with you. If you are feeling upset, they may be able to remember details of the consultation which you might have forgotten. You may want them to ask some of the questions you yourself might be hesitant of putting to the doctor.
Some people are afraid of the hospital itself. It can be a frightening place, especially if you have never been in one before, but talk about your fears to your doctor, who should be able to reassure you.
You may find that doctors cannot answer your questions fully, or that their answers sound vague. It is often impossible to say for certain whether someone can be cured or whether the leukaemia may return. Doctors know from past experience approximately how many people will benefit from a certain treatment, but it is impossible to predict the future for a particular person. Many people find this uncertainty hard to live with - not knowing whether or not you are cured can be disturbing.
Uncertainty about the future can cause a lot of tension, but fears are often worse than the reality. Gaining some knowledge about your illness can be reassuring. Discussing what you have found out with your family and friends can help to relieve some of the tension.
Denial
‘There’s nothing really wrong with me’/‘I haven’t got leukaemia’’
Many people cope with their illness by not wanting to know anything about it, or not wanting to talk about it. If that’s the way you feel, then just say quite firmly to the people around you that you would prefer not to talk about your illness, at least for the time being.
Sometimes, however, it is the other way round. You may find that it is your family and friends who are denying your illness. They appear to ignore the fact that you have leukaemia, perhaps by playing down your anxieties and symptoms or deliberately changing the subject. If this upsets you because you want them to support you by sharing what you feel, try telling them. Start perhaps by reassuring them that you do know what is happening and that it will help you if you can talk to them about your illness.
Anger
‘Why me of all people?’/‘And why right now?’
Anger can hide other feelings such as fear or sadness and you may direct your anger at the people who are closest to you and at the doctors and nurses who are caring for you. If you have a religious faith you may feel angry with your God.
It is understandable that you may be deeply upset by many aspects of your illness and there is no need to feel guilty about your angry thoughts or irritable moods. However, relatives and friends may not always realise that your anger is really directed at your illness and not against them. If you can, it may be helpful to tell them this at a time when you are not feeling quite so angry; or if you would find that difficult, perhaps you could show them this section.
Blame and guilt
‘If I hadn’t . . . this would never have happened’
Sometimes people blame themselves or other people for their illness, trying to find reasons why it should have happened to them. This may be because we often feel better if we know why something has happened, but since in most cases it is impossible to know exactly what has caused an individual’s leukaemia, there is no reason for you to feel that you are to blame yourself.
Resentment
‘It’s all right for you, you haven’t got to put up with this’
Understandably, you may be feeling resentful and miserable because you have leukaemia while other people are well. Similar feelings of resentment may crop up from time to time during the course of your illness and treatment for a variety of reasons. Relatives too may sometimes resent the changes that your illness makes to their lives.
It usually helps to bring these feelings out into the open; bottling up resentment can make everyone feel angry and guilty.
Withdrawal and isolation
‘Please leave me alone’
There may be times when you want to be left alone to sort out your thoughts and emotions. This can be hard for your family and friends who want to share this difficult time with you. It will make it easier for them to cope, however, if you reassure them that although you may not feel like discussing your illness at the moment, you will talk to them about it when you are ready.
Sometimes depression can stop you wanting to talk. If you or your family think you may be depressed, discuss this with your GP, who can prescribe a course of antidepressant drugs or refer you to a doctor or counsellor who specialises in the emotional problems of people with cancer.
What causes acute lymphoblastic leukaemia?
The cause of acute lymphoblastic leukaemia is largely unknown, but research is going on all the time into possible causes.
- It is thought that ALL is due to a series of genetic changes in a particular group of immature blood cells. It is not fully understood what causes the genetic changes, but some types of infection may be involved.
- In very rare cases, leukaemia may occur in people who have been exposed to chemicals such as benzene and other solvents used in industry.
- In recent years there has been publicity about the increase in leukaemia in people living close to nuclear power plants. Research is still under way to see if there is any definite link between these factors but as yet there is no evidence of this.
- Large doses of radiation and some drugs used to treat other cancers may also rarely cause leukaemia, many years later.
- Research has shown that exposure to electromagnetic fields, living near high-voltage electricity cables, and household radon do not increase a person’s risk of developing acute lymphoblastic leukaemia.
- People with certain genetic disorders, including Down’s syndrome and Fanconi’s anaemia, are known to have a higher risk of developing leukaemia.
Acute lymphoblastic leukaemia, like other cancers, is not infectious and cannot be passed on to other people. It is not caused by an inherited faulty gene so other members of your family are unlikely to develop leukaemia.
What are the symptoms of acute lymphoblastic leukaemia?
The main symptoms of acute lymphoblastic leukaemia are caused by the increased number of ‘blast’ cells in the blood which reduces the number of normal blood cells.
The main signs and symptoms are:
Unusual bleeding caused by a reduction in the number of platelets. This may include bruising (bruises may appear without any apparent injury), heavy periods in women, bleeding gums, and frequent nose bleeds
Feeling very tired, even breathless, at the slightest effort
Looking pale This may be due to anaemia caused by a lack of red blood cells
Aching joints and bones Bones are affected by leukaemia cells
Feeling generally unwell and run-down, perhaps with a sore throat or sore mouth
Having various infections one after the other, caused by a lack of healthy white blood cells.
Occasionally, a person will have none of these symptoms and the leukaemia is discovered during a routine blood test.
Symptoms of acute lymphoblastic leukaemia may appear very quickly over a few weeks, and treatment needs to be given as soon as possible. If you have any of these symptoms you should have them checked by your doctor - but remember, they are common to many illnesses other than leukaemia.
How does your doctor make the diagnosis?
Usually you will see your family doctor (GP), who will examine you and take a blood test. If the results of the test are found to be abnormal or suspicious your GP will refer you to the hospital for specialist advice and treatment.
The doctor at the hospital will take your full medical history before doing a physical examination and a more specific blood test, which checks the numbers of all the different types of blood cell.
Further tests
Most people with ALL are referred to a specialist haematology unit where a team of specialist doctors work together. The team is known as a multidisciplinary team and includes one or more haematologists, specialist nurses, social workers, dietitians, physiotherapists and other health care specialists.
Your doctor will need to take a sample of your bone marrow. This is the most important test in finding out the exact type of leukaemia you have, and giving the doctors the information that they need so that they can plan the best treatment for you.
- Bone marrow sample
- Cytogenetics
- Chest X-ray
- Lumbar puncture
Bone marrow sample
A small sample of bone marrow is taken from the back of the hip bone (pelvis) or occasionally the breast bone (sternum). It is looked at under the microscope by a pathologist to see if it contains any abnormal white blood cells. The pathologist will be able to tell which type of leukaemia it is by identifying the type of abnormal white cell.
The bone marrow sample is normally taken under a local anaesthetic. You are given a small injection to numb the area and a needle is passed through the skin into the bone. A small sample of the bone marrow is then drawn into a syringe for examination under a microscope.
The test can be done on the ward or in the outpatients department. The whole procedure lasts about 15–20 minutes. It may be painful, but it only lasts a short time as the marrow is drawn into the syringe. You may be offered a sedative to reduce any pain or discomfort during the test.
A sample of bone marrow is usually taken from the back of the hip bone.
Sometimes a small core of marrow is needed (a trephine biopsy) and this procedure takes a few minutes longer. You may feel bruised after the test and have an ache for a few days. This can be eased with mild painkillers.
This information helps the doctors to make decisions about treatment. It can take about a week to get the results of a bone marrow biopsy.
A sample of bone marrow is usually taken from the back of the hip bone
Cytogenetics
Within each cell of the body are chromosomes, which are made up of genes. The genes control all activities of the cell. In leukaemia there are often changes in the structure of the chromosomes within the leukaemic cells, but not the normal cells of the body. The tests on the blood and bone marrow sample will include a chromosome analysis to look for any particular changes in the chromosomes, as the different types are associated with particular genetic changes. These tests are known as cytogenetic tests. Knowing the exact type of leukaemia helps the doctors to know which treatment is likely to be most effective in treating it.
Chest X-ray
This is taken to check for any sign of swollen lymph glands in the chest.
Lumbar puncture
For this test a small sample of the fluid that surrounds your brain and spinal cord is taken to check for leukaemia cells. Your doctor uses a local anaesthetic to numb the lower part of your back and a needle is gently passed into the spine to draw off a tiny sample of the fluid.
You may feel some mild discomfort while this is being done, but it only takes a few minutes. Some people may have a headache afterwards. If this happens let your doctor know so that painkillers can be prescribed for you. You may need to lie flat for a few hours afterwards.
It will probably take several days for the results of your tests to be ready, and this waiting period will obviously be an anxious time for you. It may help if you can find a close friend or relative to talk things over with.
Classification of acute lymphoblastic leukaemia
Acute lymphoblastic leukaemia is divided into different types, according to a French-American-British (FAB) classification.
- L1 ALL – the leukaemic cells (lymphoblasts) are quite mature and similar to normal lymphocytes
- L2 ALL – the lymphoblasts are not so mature
- L3 ALL – the lymphoblasts are very immature and do not function well.
Another method classifies ALL according to the main type of leukaemic lymphocyte that is present. The most common type in adults is pre B-cell ALL. Other types are T-cell ALL and mature B-cell ALL.
Your blood and bone marrow samples will be checked by haematologists and pathologists to find out which type of ALL you have. They will look to see exactly which type of cell has become leukaemic and at which stage of its development. The cells may also be tested with antibodies for specific proteins on their surface. This process is known as immunohistiotyping. The most useful factor in deciding on treatment for each individual person is the result of the cytogenetic tests.
Philadelphia chromosome
Some people with ALL have a particular genetic abnormality known as a Philadelphia chromosome which can be detected by cytogenetic tests. The Philadelphia chromosome develops when part of chromosome 9 (the ABL gene) wrongly attaches to chromosome 22 (the BCR gene) during cell division. This creates a new gene, known as BCR-ABL, which produces a specific new protein. The protein causes the production of an enzyme called tyrosine kinase, which stimulates the production of abnormal blood cells by the bone marrow.
The Philadelphia chromosome is not inherited and cannot be passed on to your children.
What types of treatment are used?
- Types of treatment
- Giving your consent
- The benefits and disadvantages of treatment
Types of treatment
Your doctor plans your treatment by taking into consideration a number of factors, including the type of leukaemia, any chromosomal abnormalities within the leukaemia cells, and your age and general health. In the UK, treatment for acute lymphoblastic leukaemia is usually given according to guidelines which have been agreed by specialists and are based on the results of trials and research. Trials are also co-ordinated in the same way and you may be asked if you are willing to take part in a trial of a new and possibly better treatment.
The aim of treatment for acute lymphoblastic leukaemia (ALL) is to destroy the leukaemia cells and allow the bone marrow to work normally again.Chemotheraphy is the first and main form of treatment given. The chemotherapy is carried in the bloodstream to nearly all parts of the body, but does not reach the brain and spinal cord, and in men it does not reach the testes. For this reason, additional treatment may be needed where chemotherapy is given into the fluid around the brain and spinal cord. This is sometimes combined with radiotherapy to the brain. Men may be given radiotherapy to the testes. Radiotherapy given in this way to the brain and spinal cord or the testes is known as prophylactic radiotherapy.
Chemotherapy can get rid of the leukaemia cells in up to 8 out of 10 people with ALL. This is known as remission. In some people the ALL will come back (relapse), usually within a few years of the treatment. If ALL does come back, further treatment can be given either with standard-dose chemotherapy or high-dose chemotherapy. This treatment can give a further remission in about 1 in 3 people.
In some people with ALL, certain factors make it more likely to come back after treatment. This is known as being at high risk of relapse. In this situation a bone marrow transplant from a donor may give a better chance of curing the leukaemia than standard-dose chemotherapy and may be recommended as a treatment option.
If you have any questions about your treatment, don’t be afraid to ask your doctor or nurse. It often helps to make a list of questions for your doctor and to take a close friend or relative with you.
Giving your consent
Before you have any treatment your doctor will explain the aims of the treatment to you and you will usually be asked to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form you should have been given full information about:
- the type and extent of the treatment you are advised to have
- the advantages and disadvantages of the treatment
- any possible alternative treatments that may be available
- any significant risks or side effects of the treatment.
If you do not understand what you have been told, let the staff know straight away so that they can explain again. Some cancer treatments are complex, so it is not unusual for people to need repeated explanations.
Patients often feel that the hospital staff are too busy to answer their questions, but it is important for you to be aware of how the treatment is likely to affect you and the staff should be willing to make time for you to ask questions.
You can always ask for more time to decide about the treatment, if you feel that you can’t make a decision when it is first explained to you.
You are also free to choose not to have the treatment, and the staff can explain what may happen if you do not have it. It is essential to tell a doctor, or the nurse in charge, immediately so that he or she can record your decision in your medical notes. You do not have to give a reason for not wanting to have treatment, but it can be helpful to let the staff know your concerns so that they can give you the best advice.
The benefits and disadvantages of treatment
Many people are frightened by the idea of cancer treatments, particularly because of the side effects that can occur. Some people ask what would happen if they had no treatment.
Although many of the treatments can cause side effects, knowledge about how these treatments affect people, and improved ways of reducing or avoiding many of these problems, have made most of the treatments much easier to cope with.
Treatment can be given for different reasons and the aims and possible benefits will vary depending upon the individual situation. For people who have just been diagnosed with ALL it is important to start treatment very quickly as this gives a good chance of curing it. Without treatment people may die of the leukaemia within a few weeks. The treatment may be standard chemotherapy, or a stem cell or bone marrow transplant.
If the leukaemia has come back after initial treatment, further treatment may be able to get rid of the leukaemia again for a time (known as a remission) or it may only be able to control the leukaemia, leading to an improvement in symptoms and a better quality of life. However, for some people in this situation the treatment will have no effect upon the leukaemia and they will get the side effects without any of the benefit.
If you have been offered treatment that aims to cure your leukaemia, deciding whether to accept the treatment may not be difficult. However, if a cure is not possible and the treatment is being given to control the leukaemia for a period of time, it may be more difficult to decide whether to go ahead.
Making decisions about treatment in these circumstances is always difficult, and you may need to discuss this issue in detail with your doctor. If you choose not to have treatment, you can still be given supportive (palliative) care, with medicines to control any symptoms.
Chemotherapy
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy the leukaemia cells. These work by disrupting the production of the leukaemia cells. The drugs circulate all over the body in the bloodstream. As some of these drugs cannot get into the fluid around the brain and spinal cord (cerebrospinal fluid) they need to be injected directly into the fluid through a lumbar puncture. This is done even if leukaemia cells cannot be detected in the cerebrospinal fluid, since research has shown that there will almost always be some leukaemia cells in the cerebrospinal fluid which need to be destroyed.
- Stages of treatment
- How is chemotherapy for ALL given?
- How long will the chemotherapy course last?
- Side effects of chemotherapy
Stages of treatment
When chemotherapy is given for acute lymphoblastic leukaemia it is divided into three different phases.
Induction - This is the initial intensive treatment, aimed at destroying as many leukaemia cells as possible. It usually achieves a remission of the disease, which means that the leukaemia cells can no longer be seen when a sample of bone marrow is examined under the microscope.
Drugs that are often used in this phase include daunorubicin, vincristine, methotrexate, asparaginase (crisantaspase), cyclophosphamide, cytosine arabinoside and 6-mercaptopurine. Steroids and drugs such as allopurinol and folinic acid may also be given.
Intensification (consolidation) - A second, third or occasionally fourth intensive course of chemotherapy is usually given to increase the chance of a cure. The drugs that may be used in this phase include high-dose methotrexate, asparaginase, vincristine, cytosine arabinoside, etoposide, daunorubicin, cyclophosphamide, and 6-thioguanine. Steroids may also be given. Some people who have the Philadelphia chromosome may be given a drug called imatinib (Glivec) alongside, or instead of, chemotherapy in the intensification phase as part of research trials.
Continuing therapy (maintenance) - This is a less intensive course of chemotherapy given over a prolonged period, mainly as tablets. It is aimed at killing any remaining leukaemia cells. The drugs used may include mercaptopurine, methotrexate tablets, vincristine, and cytosine arabinoside (into the fluid around the spinal cord). Steroids and antibiotics may also be given. Imatinib (Glivec) may continue to be given in this phase.
Instead of standard-dose chemotherapy some people may have high-dose chemotherapy with stem cell rescue or a bone marrow transplant, as part of research trials, at this stage. The high-dose treatment may include radiotherapy to the whole body and high doses of a chemotherapy drug such as etoposide or busulphan.
How is chemotherapy for ALL given?
Some drugs may be given as tablets, but the main induction and intensification treatments consist of a combination of three or four drugs given by injection into a vein (intravenously). To make this easier and to prevent you from having frequent injections a plastic tube (called a central line) can be put into a vein in your chest.
The tube is put in under a general or local anaesthetic. Usually a small cut (incision) will be made in the skin over your chest, and a narrow flexible plastic tube will be placed under your skin and into a large vein in your neck. The other end of the tube stays outside your body and has a screw cap at the end. The tube can be used to give drugs and fluids, administer the stem cells or bone marrow, and also collect blood samples.
You may have some discomfort for a couple of days after the line has been put in, but it should then be painless. It can stay in for as long as it is needed, which may be more than two years. The nurses will show you how to look after it to prevent blockages or infections.
Instead of a central line, a PICC line (peripherally inserted central venous catheter) or an implantable port may be used. A PICC line is a long, fine tube put into a vein in the crook of the arm. An implantable port is a thin, soft plastic tube that is put into a vein in the chest and has an opening (port) just under the skin of the chest or arm. The doctor or chemotherapy nurse will explain the procedure to you. You will be given a local anaesthetic before the line is put in.
As well as by injection into a vein, chemotherapy for acute lymphoblastic leukaemia is often given directly into the fluid surrounding the brain and spinal cord (cerebrospinal fluid). This is done using a similar procedure to the lumbar puncture. After giving a local anaesthetic, the doctor gently puts a needle into the fluid in the spine, a small amount of fluid is drawn off and the drugs are injected. The drugs will help to destroy any leukaemia cells in the fluid. Giving chemotherapy into the fluid around the brain and spinal cord is known as intrathecal chemotherapy.
How long will the chemotherapy course last?
The induction and intensification chemotherapy is given as several sessions (cycles) of treatment, each normally lasting for a few days, followed by a rest period of a few weeks. This period allows your body to get over the side effects of treatment and your normal bone marrow cells to recover so that they can make new blood cells. The number of cycles you have will depend on how your leukaemia responds to the drugs. You will usually have to spend several weeks in hospital while the drugs are being given, but if you feel well enough you will be able to go home between treatments. Nowadays, most people have about four cycles of intensive chemotherapy.
During your treatment you will also have ‘supportive care’. This treats the symptoms that have been caused by a lack of normal blood cells due to the leukaemia itself and to chemotherapy. Drips (transfusions) of red blood cells and platelets are usually necessary to replace the normal blood cells. These can also be given through your central line. Throughout your treatment you will have regular blood tests and lumbar punctures to check for leukaemia cells. Depending on the results of these tests it may be necessary for your doctor to change the treatment you are having.
Once you have completed the initial course of chemotherapy, which usually takes several months, your doctor may prescribe further chemotherapy, often as tablets, to be taken over at least two years. This is known as maintenance or continuation therapy. During this time you will need to make regular visits to the outpatients department of the hospital so that your doctor can check that the drugs are working.
Side effects of chemotherapy
Increased risk of bruising and bleeding
Platelets help blood to clot. When you have leukaemia, the number of platelets in your blood is lower than normal, and chemotherapy may temporarily reduce the numbers even more. This means that you may bruise very easily and may bleed heavily from even minor cuts and grazes.
You may need to have a drip (transfusion) of platelets before your chemotherapy begins, and at times during your treatment, to replace the missing platelets.
Lowered resistance to infection
While the chemotherapy drugs are acting on the leukaemia cells in your body, they also reduce the number of normal cells in your blood for a while. When these cells are in short supply, you are more likely to get an infection During chemotherapy your blood will be tested regularly. You will probably be given tablets or other medicines to reduce the risk of infection. If you get an infection, you will be given medicines to treat it. Most infections are caused by bacteria or viruses already in your own body, but if your immunity is low it is best to avoid crowded places where you may come into contact with someone who may have an infection.
You may also be advised to be careful about what you eat, to guard against the risk of infection from raw, undercooked or contaminated food. The hospital will give you information on how to prepare foods and which foods to avoid.
If your temperature goes above 38ºC (100.5ºF) or you suddenly feel unwell, even with a normal temperature, contact your doctor or the hospital straight away.
Anaemia
If the level of red blood cells (haemoglobin) in your blood is low you may become very tired and lethargic. You may also become breathless. These are all symptoms of anaemia - a lack of haemoglobin in the blood.
Anaemia can be treated very successfully by blood transfusions. You should quickly feel more energetic after a transfusion and the breathlessness will be eased.
Tiredness (fatigue)
This is a very common effect of chemotherapy. The fatigue may be due to anaemia, but may also occur as a result of chemotherapy, even if your blood count is normal. You may be especially aware of this when you are at home between courses of chemotherapy and for a few months after the treatment has finished.
Feelings of sickness
Some of the drugs used to treat acute lymphoblastic leukaemia may make you feel sick (nausea) and may sometimes cause vomiting. There are now very effective anti-sickness drugs (anti-emetics) to prevent or greatly reduce nausea and vomiting . Your doctor can prescribe these for you.
Sore mouth
Some chemotherapy drugs can make your mouth sore and cause mouth ulcers. Regular mouthwashes are important and the nurse will show you how to use these properly. If you don’t feel like eating during treatment, you could try replacing some meals with nutritious drinks or a soft diet.
Changes to the way that your heart works
Some of the drugs used to treat acute lymphoblastic leukaemia may affect the heart muscle. The doses of the chemotherapy drugs used are very carefully monitored, and heart tests (e.g. cardiac echograms) may be done from time to time to check your heart function.
Hair loss
Unfortunately, hair loss is another common side effect of these drugs. People who lose their hair often cover up by wearing wigs, hats or scarves. Most patients are entitled to a free wig from the National Health Service and your doctor or one of the nurses on the ward can arrange for a wig specialist to visit you.
If you lose your hair it will grow back over a period of 3–6 months when the treatment ends.
Although they may be hard to deal with at the time, these side effects will disappear once your treatment is over.
Coping with chemotherapy
Chemotherapy affects different people in different ways. Some people find they are able to lead a fairly normal life during their treatment, but many find they feel very unwell at times, become very tired and have to take things much more slowly. Do as much as you feel like and rest whenever you need to.
Steroid therapy
Steriods are drugs which are often given with chemotheraphy to help destroy the leukaemia cells. Prednisolone is the most commonly used steroid for ALL, but dexamethasone is used as part of some research trials.
Side effects
Steroids for acute lymphoblastic leukaemia are generally given only for a few days a month and so usually have few side effects. They are given as tablets. The side effects you may notice are an increased appetite, feeling more energetic and difficulty in sleeping.
If you take steroids for some time, you may have some other temporary side effects. These can include water retention, high blood pressure, indigestion and a slightly increased risk of getting infections. You may also develop an increased level of sugar in the blood. If this does happen to you, your doctor will prescribe drugs which will need to be taken daily to bring your blood sugar level back to normal. You may have to do a simple daily test to check for sugar in your urine. Your nurses will show you how to do this.
It is unusual for people with acute lymphoblastic leukaemia to have to take steroids for a long time, but if you do you may notice that you put on weight.
It is important to remember that all these side effects are temporary and will gradually disappear as the steroid dose is reduced. You should carry a card with you, or wear a medicalert, stating that you are taking steroids.
Radio therapy
Radio therapy treats cancer by using high-energy rays which destroy the cancer cells, while doing as little harm as possible to normal cells.
- When is it given?
- Planning your treatment
- Side effects
When is it given?
Radiotherapy is given in the hospital radiotherapy department. The course of treatment is usually in 8–10 sessions from Monday to Friday over two weeks, with a rest at the weekend. Your doctor will discuss your treatment with you in detail beforehand.
If you need a bone marrow or stem cell transplant you may have a special form of radiotherapy called total body irradiation, or TBI. Radiotherapy is given to the whole body to destroy the bone marrow cells.
Planning your treatment
To ensure that you receive maximum benefit from your radiotherapy it has to be planned carefully. The first step is to make sure that you lie in exactly the same position for each treatment. On your first few visits to the radiotherapy department you will be asked to lie under a large machine called a simulator, which takes x-rays of the area to be treated. Sometimes a CT scanner may be used for the same purpose.
For cranial radiotherapy you may be fitted with a special clear plastic mask which is moulded to the exact size of your head and neck. This can be attached to the treatment couch and makes sure that your head stays in the correct position. Marks are made on the mask to show the precise treatment area.
If you are not wearing a mask for treatment, marks will be drawn on your skin. This helps the radiographer, who operates the machine and gives you your treatment, to position you accurately and to show where the rays are to be directed. These marks must remain visible throughout your treatment but they can be washed off once your treatment is over. It is possible to make tiny permanent marks (like tattoos) on your skin. At the beginning of your radiotherapy you will be given instructions on how to look after your skin in the area being treated.
Treatment planning is a very important part of radiotherapy and it may take a few visits before the clinical oncologist (the doctor who plans your treatment) is satisfied with the result.
Before each session of radiotherapy the radiographer will position you carefully on the couch and make sure that you are comfortable. During your treatment, which only takes a few minutes, you will be left alone in the room but you will be able to talk, via an intercom, to the radiographer who will be watching you from the next room. Radiotherapy is not painful but you do have to lie still for a few minutes while the treatment is being given.
Side effects
Radiotherapy can cause general side effects such as feeling sick (nausea) and tiredness. When radiotherapy is given to the head it can cause specific side effects such as severe tiredness and drowsiness (somnolence), which usually appear a couple of weeks after your treatment begins and may last for a few weeks.
Hair loss
If you have radiotherapy to the head or to the testes the hair in these areas will fall out This is only temporary and it will usually grow back once your treatment is over, but it may not be as thick as it was before.
Feeling sick
Nausea can usually be effectively treated by anti-sickness drugs (called anti-emetics), which your doctor can prescribe. If you don’t feel like eating, you can replace meals with nutritious high-calorie drinks. These are available from most chemists and can also be prescribed by your GP.
Tiredness
As radiotherapy can make you tired, try to get as much rest as you can.
Radiotherapy does not make you radioactive and it is perfectly safe for you to be with other people, including children, throughout your treatment.
Bone marrow and stem cell transplant
A blood stem cell or bone marrow transplant allows you to have much higher doses of chemotherapy than usual, to improve the chances of curing the leukaemia. Very high doses of chemotherapy, sometimes with radiotherapy, are given over a few days. Bone marrow and stem cell transplants may be of benefit to some people but are not suitable for everyone with acute lymphoblastic leukaemia. They are usually used if the ALL comes back after treatment or if the ALL is a type that is very likely to come back after initial chemotherapy treatment. If your doctor thinks that a transplant is necessary or a possible treatment option for you, he or she will discuss it with you in more detail.
The two main types of transplant are decribed below.
- Stem cell or bone marrow from a donor (allogeneic transplant)
- Using your own stem cells or bone marrow (autologous transplant or high dose treatment and stem cell support)
- Effects of high-dose treatment
- Recovery from high-dose treatment
Stem cells or bone marrow from a donor (allogeneic transplant)
This type of transplant involves having stem cells or bone marrow which have been donated from another person (a donor). Doctors call this an allogeneic transplant or an allograft.
Treatment with high-dose chemotherapy is given to destroy the cells in your bone marrow. Afterwards, bone marrow donated by someone else (a donor) is given to you. This means that you have a source of healthy bone marrow, which will also help you to recover from the effects of your high-dose treatment. The most suitable donor is usually a brother or sister whose bone marrow is a close match to your own. Occasionally it is possible to use bone marrow or stem cells from an unrelated donor if tests have shown that their white blood cells are a good match with yours.
Bone marrow is removed using a general anaesthetic, unlike stem cells which can be taken directly from the blood by a machine called a cell separator. Before stem cells can be collected a donor will need to have injections of growth factor. This is a protein that encourages the bone marrow to produce lots of stem cells which spill over into the blood and can then be collected. It does not cause any harm to the donor.
When donor stem cells or bone marrow are given into the body the donor cells can sometimes attack the cancer cells. For some months after the transplant, your doctors and nurses will be monitoring you carefully for any signs of the new marrow reacting against your own body tissue. This is called graft-versus-host disease (GvHD). It can occur up to six months after your transplant and can cause diarrhoea, rashes and liver damage, but it does not mean that your transplant has failed. Your doctor will prescribe drugs to help prevent the graft reacting against your body.
An allogeneic transplant is a serious and complicated procedure. This intensive treatment is carried out in specialised transplant units in specialist hospitals. Although some people have a better chance of curing the leukaemia with high-dose treatment there is also a small risk of dying from the procedure itself.
Whichever of the above approaches is taken your doctors and nurses will make sure that you and your donor are clear about what is involved. Don’t be afraid to ask about the possible benefits and risks of the treatment in your situation and ask questions about anything that you do not understand.
Using your own stem cells or bone marrow (autologous transplant or high-dose treatment and stem cell support)
Your own stem cells or bone marrow can be used to allow you to have high doses of chemotherapy. This is sometimes called an autologous transplant or an autograft. But, strictly speaking, only situations where stem cells or bone marrow are taken from someone else are actually transplants. Throughout this booklet the term high-dose treatment and stem cell support is used rather than autologous transplant.
High doses of chemotherapy and sometimes whole-body radiotherapy (total body irradiation or TBI) are given to improve the chances of curing leukaemia. The high-dose treatment will destroy the cells in your bone marrow. Your own stem cells or, less commonly, bone marrow can be used to help ‘rescue’ you from this intensive treatment. Some of your own stem cells or bone marrow are taken and stored before you have high doses of treatment. When the treatment is over, your stem cells or bone marrow are given back to you through a drip into a vein (like a blood transfusion).
In order for high-dose treatment and stem cell support to be successful it is important that there is no sign of any cancer cells in the bone marrow. So high-dose treatment is usually given if the leukaemia has been cleared out of the bone marrow by previous chemotherapy treatment. Sometimes bone marrow is put through a type of cleaning process (purging) to try to remove any cancer cells that may still be present.
Although high-dose treatment and stem cell support is a serious procedure it is less complicated than using stem cell or bone marrow from a donor (see below). There are fewer complications and recovery is faster. It is performed in many cancer treatment hospitals.
Effects of high-dose treatment
The first stage is to destroy your own bone marrow completely. This is done with high doses of chemotherapy, often combined with whole-body radiotherapy. The whole-body radiotherapy is usually given as a single dose lasting over an hour or as eight sessions each lasting about 15 minutes. You may have the treatment lying down or sitting in a supportive chair. If treatment is given as one long session you may be given sedation to help to relax you.
The treatments can make you feel extremely unwell for a couple of weeks. You may feel very sick and be very weak and tired. You may have other effects such as diarrhoea or a sore mouth. Usually hair is lost completely after high-dose chemotherapy. The hospital staff will give you medicines to minimise the side effects.
After this treatment the donated bone marrow or stem cells are given through a drip into your vein or through your central line.
The new marrow or stem cells, known as a graft, take a few weeks to settle in your bones and produce the blood cells that you need. Because of your low immunity certain precautions will be taken to protect you from infections until your white count has recovered. You will be looked after in a room of your own (isolation) for several weeks and may be given antibiotics to protect you against the possibility of infection. There will be some restrictions to your diet, and family and friends will be asked not to visit you if they have coughs or colds or are unwell. Most hospitals and specialist centres have their own policy on how to care for you during this time. Your doctor or nurse will explain this to you beforehand.
Recovery from high-dose treatment
It may take up to a year to recover from high-dose treatment and you will be carefully monitored during this time.
Imatinib (Glivec)
A new type of drug known as a signal transduction inhibitor can be used as part of the treatment for some types of ALL. It is called imatinib (Glivec) and is taken as capsules which are swallowed.
Glivec works by blocking (inhibiting) signals within the leukaemia cells that cause them to become abnormal and continue to grow and divide. Inhibiting the signals makes the cells die.
Glivec may cause mild feelings of sickness, and sometimes diarrhoea. It may also cause leg aches and cramps, rashes, and swelling of the face, especially around the eyes. The side effects are usually mild and treatable.
What is remission?
The main aim of treatment for acute lymphoblastic leukaemia is to achieve a remission. This means that the abnormal, immature white cells or blasts can no longer be detected in your blood or bone marrow and normal bone marrow has developed again.
However, once you are in remission there may still be a very small number of abnormal lymphoblasts left. To destroy these, your doctor may prescribe maintenance or continuation chemotherapy which may last for several years. These drugs are mainly taken as tablets and you will need to have regular check-ups to monitor their effect. Very specialised blood tests to find particular proteins present on the surface of the leukaemia cells can show if any leukaemia cells are still present in the body.
For many people with acute lymphoblastic leukaemia the remission lasts indefinitely and the person is said to be cured.
What if ALL comes back?
Unfortunately, in some people the ALL does come back. This is called relapse. The disease may come back in the bone marrow, the fluid around the brain and the spinal cord or, in men, in the testicles.
If you do have a relapse, further treatment can be given, but your leukaemia may be resistant to the drugs initially used.Therefore, different drugs or new combinations of drugs may be needed to give you further remissions. If you have not had a transplant before your doctors may recommend a bone marrow or stem cell transplant
Follow up
Once your treatment is completed, you will have regular check-ups and x-rays. These will continue for several years. If you have any problems, or notice any new symptoms between these times, let your doctor know as soon as possible.
Blood tests
Samples of blood will be taken regularly throughout your treatment to check your general health and the number of normal and abnormal cells in the blood.
Research - clinical trials
Research into new ways of treating leukaemia is going on all the time.
When a new treatment is being developed it goes through various stages of research. To begin with it will be looked at in the laboratory, and sometimes tested on cancer cells in a test tube. If the treatment seems as though it might be useful in treating cancer, it is then given to patients in research studies (clinical trials). As a first step, these aim to find a safe dose, see what side effects the therapy may cause, and identify which cancers it might be used to treat. These early studies are known as phase 1 trials.
If early studies suggest that a new treatment may be both safe and effective, further trials (phases 2 and 3) are done to find out whether it is better than existing treatments, or offers extra benefit when given together with existing treatments, and to compare the new treatment with the current best standard treatments.
Clinical trials are very necessary for working out how useful any possible new treatment might be and seeing whether it is better than existing treatments. Because this must be done carefully and thoroughly, it usually takes some years from the time when a new treatment is first discovered (often with a lot of publicity in the papers and on TV) until the time when its true value is established.
You may be asked to take part in a trial. There can be many benefits in doing this. You will be helping to improve knowledge about cancer and the development of new treatments and you will be carefully monitored during and after the study.
It is important to bear in mind that some treatments that look promising at first are often later found not to be as good as existing treatments, or to have side effects that outweigh any benefits.
You may be asked by your doctors for permission to store some of the samples of your blood or bone marrow, so that they can be used in research to find the causes of cancer.
The treatments that are now used for ALL have been developed over the past 30–40 years by using clinical trials. Each trial can help to improve the treatment and cure rates for ALL. Since treatments can probably be improved even further some trials are currently being carried out in the UK.
One trial, called UKALL XII, aims to see whether a donor transplant, an autologous transplant or standard-dose chemotherapy are better treatments for people under the age of 56 with ALL. It is also aiming to find out whether imatinib (Glivec) is a helpful treatment for people with Philadelphia chromosome-positive ALL.
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