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This information is about a group of conditions known as the myelodysplastic syndromes (MDS). They are a group of disorders affecting the bone marrow. They are not types of cancer, but can develop into leukaemia. However, the symptoms are often very similar to those caused by leukaemia, and the treatments used are also similar.
The bone marrow is the spongy substance in the centre of some of our bones. It produces cells known as stem cells. Stem cells are immature cells that develop into the three different types of blood cells:
Myelodysplasia is an abnormality of the bone marrow, which interferes with its ability to make healthy blood cells.
Classification systems are used to break myelodysplasia down into various sub‑types. A commonly used classification system in the UK was produced by the World Health Organisation (WHO). The system looks at how many abnormal, immature cells (blasts) there are, and the characteristics (cytogenetics) of the abnormality. The subtypes are:
The myelodysplastic syndromes are further separated into low-, intermediate-, or high- risk groups, depending upon the number of abnormal immature blood cells (blasts) that are seen, the characteristics of the abnormality, and how the disease is affecting the normal number of healthy blood cells. The risk group will help your doctors decide on the best treatment for you, and will give them some idea of how well your disease will respond to the treatment.
In low-risk disease the bone marrow is only slightly affected and the disease develops quite slowly.
In intermediate-risk myelodysplasia the disease is slightly more advanced. This risk group is often split into two sub-groups: low-intermediate- and high‑intermediate- risk.
In high-risk disease the bone marrow is more widely affected and the disease can progress more quickly.
Most cases (6–7 out of every 10) of myelodysplasia have no known cause, and are called primary myelodysplastic syndrome.
In a small number of people, a myelodysplastic syndrome occurs as a result of previous treatment with either chemotherapy or radiotherapy. This is known as therapy-related, or secondary, myelodysplastic syndrome.
The myelodysplastic syndromes are more common in elderly people but can occur at any age. They are very rare in childhood.
The main symptoms of myelodysplasia include anaemia (feeling tired and sometimes breathless), repeated infections, and bruising or bleeding. The symptoms occur due to low levels of healthy red blood cells, white blood cells, and platelets. It is not unusual for myelodysplasia to be discovered during a routine blood test when the person has no symptoms.
A small number of people will have an enlarged spleen. The spleen is part of the body’s defence system against infection and is found on the left side of the abdomen, just below the lower ribs.
The diagnosis is usually made by a haematologist (a doctor specialising in conditions of the blood), using a blood test known as a full blood count, and a bone marrow biopsy and aspiration (see below).
A full blood count measures the number of blood cells (of all different types) in the blood.
A bone marrow biopsy involves taking a sample of bone marrow from the back of the hipbone (pelvis), or occasionally, the breast bone (sternum).
The bone marrow sample is taken under a local anaesthetic. You are given a small injection to numb the area, and a needle is passed gently through the skin and into the bone.
A tiny sample of the marrow is then drawn (aspirated) into a syringe. Sometimes a small core of marrow is also needed (a trephine biopsy, also known as an aspiration) and this takes a few minutes longer. This procedure should not be painful, although you may feel some discomfort and pressure.
The bone marrow sample is then looked at under a microscope by a haematologist, to see if it contains any abnormal cells.
Cytogenetics Within each cell of the body are chromosomes, which are made up of genes. The genes control all activities of the cell. The tests on the blood and bone marrow sample will include a chromosome analysis to look for any particular changes in the chromosomes. These tests, known as cytogenetic tests, can help to determine the sub-type of myelodysplasia and the risk group. They also help decide which will be the best treatment for you, and predict how well the disease may respond to that treatment.
The type of treatment that is most appropriate will depend upon your age and general health, as well as the type of myelodysplasia you have, the risk group, and how it is affecting you. Some people, with low-risk disease, may not need any treatment initially.
As the condition generally develops very slowly, the aim of treatment for most people is to control the disease and improve any symptoms, such as tiredness and breathlessness. Treatment may also help to prolong survival.
For a small number of people, it may be possible for a stem cell transplant to be given, with the intention of curing the disease.
People with high risk myelodysplasia may only need supportive treatment to help improve any symptoms caused by low blood counts. Others may need chemotherapy, or it may be possible for a small number of people to have a stem cell transplant.
When symptoms such as anaemia, bruising and bleeding, or repeated infections do occur, they are caused by low levels of healthy cells in the blood. Drips (transfusions) of blood or platelets can be given to help improve symptoms. Antibiotics may also be needed to treat or prevent infection. This is often known as supportive treatment.
If you have many blood transfusions over many months, there is a small risk of overloading the body with iron. This is because each bag of blood contains red blood cells, and red blood cells contain iron. An iron overload can be harmful, and treatment may be needed to reduce the amount of iron in the body. Your doctor or nurse will explain more about this treatment, if you need to have it.
It may be possible to boost the number of healthy red and white cells by having growth factors. The drugs G-CSF (which can boost the number of white cells) and erythropoietin (which helps to boost the number of red cells) are usually given as injections under the skin (subcutaneously). Unfortunately these treatments may not be effective for everyone who has myelodysplasia.
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It is given to help control the disease and any symptoms. It can either be given as tablets or capsules, or as an injection into a vein (intravenously). The treatment may involve just one type of chemotherapy, or a combination of drugs.
The choice of chemotherapy will often depend upon your age and how the disease is affecting you (the risk group). Low intensity treatment using low doses of chemotherapy may be used for older people, or for those whose myelodysplasia is of low or low–intermediate risk.
High intensity treatments, using chemotherapy regimens similar to those used to treat acute leukaemia, may be used for people with high risk disease. The side effects of high intensity treatment are often greater and are usually only suitable for younger and fitter people.
Chemotherapy treatment can often be given to you as an outpatient, but may require a short stay in hospital.
Stem cell transplantation may be a suitable treatment for a small number of people with myelodysplasia. This treatment is generally only used for younger patients, as the treatment is very intensive and the risks involved with a transplant increase as you get older.
Transplants are usually considered for people younger than 50–55, who have a brother or sister who can donate matching stem cells for them. This treatment usually involves high doses of chemotherapy or radiotherapy to destroy the unhealthy bone marrow. Healthy stem cells are then given into the blood through a drip. The stem cells make their way into the bone marrow and start to produce red and white cells, and platelets again.
In some situations, you may be given the immunosuppressant drugs cyclosporine or anti-thymocyte globulin (ATG). Immunosuppressant drugs can suppress the immune system and may help to increase the number of blood cells produced in the bone marrow. They may also help to control the progression of the myelodysplasia. Your doctor can advise whether these drugs would be suitable for you.
You may be given medicines known as biological modifiers, such as retinoic acid, that can encourage the immature blood cells to mature normally (a process known as differentiation). This can help to control the myelodysplasia and improve symptoms. Biological modifiers are often given with low-dose chemotherapy.
A number of new treatments for myelodysplasia, or new ways of giving existing treatments, are currently being researched, and you might be invited by your doctor to take part in a clinical trial. Your doctor must discuss the treatment fully with you, and have your informed consent, before entering you into any clinical trial.
Newer treatments include the drugs 5-azacitidine (Vidaza®), which is given as an injection under the skin (subcutaneously), and lenalidomide (Revlimid®), which is taken by mouth (orally). They may help to control the myelodysplasia and improve symptoms. Your nurse or doctor can discuss more about these drugs and any possible side effects.
It is often difficult to find information and support when you are diagnosed with a condition such as myelodysplasia. You may have concerns about your treatment and how effective it might be. It is important to discuss these concerns with the doctors and nurses caring for you.
You may experience many different emotions including anxiety and fear. These are all normal reactions, and are part of the process that many people go through in trying to come to terms with their condition. Many people find it helpful to talk things over with their doctor or nurse. Close friends and family members can also offer support.
Each person’s need for information and support will of course be individual. If you need further information about the myelodysplastic syndromes, the treatment, controlling symptoms, or the practical and emotional problems that these illnesses can cause, please contact our cancer support service.
This section has been compiled using information from a number of reliable sources, including:
For further references, please see the general bibliography.
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