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This information is about a group of conditions that affect the bone marrow| known as the myelodysplastic syndromes (MDS). MDS is also sometimes called myelodysplasia.
MDS is a group of conditions that affect the bone marrow.
Bone marrow is a spongy material found inside the bones. It produces cells known as stem cells. All the blood cells in the body develop from stem cells.
Stem cells make blood cells called blasts that aren't fully developed (immature) called blasts. As the blasts develop (mature) they become one of the three main types of blood cells:
The bone marrow makes millions of blood cells every day. While blood cells are developing they stay inside the bone marrow. When they are mature they leave the bone marrow and enter the blood stream.
People with MDS have an abnormality of their bone marrow. This means they don't make enough healthy blood cells.
Sometimes in MDS, the bone marrow also makes blasts that don't develop (mature) or work properly.
MDS is more common in people over 60, but it can happen at any age.
How MDS affects you will depend on the type you have. In some people it may develop slowly, while in others it may be more aggressive. Some types of MDS are at greater risk of developing into acute leukaemia|. Your specialist can explain more about the type of MDS you have.
In most cases the cause of MDS is unknown. This is called primary MDS. In a small number of people, MDS develops as a result of previous treatment with chemotherapy| or radiotherapy|. This is known as secondary or treatment-related MDS.
The main symptoms of MDS are caused by low levels of healthy blood cells, and are:
Some people are diagnosed with MDS when they have a routine blood test and have no symptoms.
A small number of people have an enlarged spleen. The spleen is on the left side of your abdomen (tummy) just below the ribcage, and is part of the body's immune system.
You will usually be seen by a haematologist (a doctor specialising in blood disorders). MDS is diagnosed with blood tests and a bone marrow sample.
This blood test counts the numbers of healthy red blood cells, white blood cells and platelets in your blood.
Your bone marrow sample will be tested to find out more about the type of MDS you have. Tests such as cytogenetic tests are done.
A bone marrow sample being taken
View a large copy of the illustration of a bone marrow sample being taken|
The sample is usually taken from the back of your hip bone (pelvis). You will be given an injection of local anaesthetic to numb the area first.
The doctor then passes a needle through the skin into the bone and draws a small sample of liquid marrow into a syringe (bone marrow aspirate). After this, the doctor takes a small core of marrow from the bone (a trephine biopsy). Both samples will be looked at later under a microscope.
The test can be done on the ward or in the outpatients department. The whole procedure takes about 15-20 minutes. It may be uncomfortable as the marrow is drawn into the syringe, but this should only last for a few seconds.
You may feel bruised and have an ache for a few days after the test. You can take some mild painkillers to ease this.
The cells in our body contain chromosomes, which control the activities of the cell. There may be changes in the structure of chromosomes in MDS. Tests look for particular chromosomal changes (cytogenetics). These tell the doctor the sub-type of MDS you have and the risk group you are in (see classification of MDS, below).
MDS can be divided up (or classified) into different sub-types. Different systems are used to do this. In the UK, doctors usually classify MDS according to the World Health Organisation (WHO)| system.
This system looks at how many abnormal, immature cells (blasts) there are, and the characteristics (cytogenetics) of the abnormality. The major sub-types are:
MDS is also divided into risk groups. This depends on the person's full blood count, the number of blasts in their bone marrow, the results of the cytogenetic tests and whether they need blood transfusions|.
The risk group helps your doctors decide on the best treatment for you.
In low-risk disease the bone marrow is only slightly affected and the disease develops slowly.
In intermediate-risk disease the disease is slightly more advanced. This risk group is often split into two subgroups: low-intermediate and high-intermediate risk.
In high-risk disease the bone marrow is more widely affected and the disease can progress more quickly.
Knowing your sub-type of MDS and the risk group you are in helps your doctors plan the most appropriate treatment for you, and predict how well the MDS may respond to it.
The type of treatment that's most appropriate for you will depend on the type of MDS you have, the risk group, your age and your general health.
Some people with low- or intermediate-risk MDS and no symptoms may not need treatment to begin with. If you don't have treatment you will have regular check-ups and your blood count will be monitored. This is sometimes called watch and wait.
Most people with MDS have treatment at some point to control and improve the symptoms caused by low blood counts. This is usually called supportive treatment|. Sometimes this may be the only treatment that's needed.
Chemotherapy may be helpful for some people depending on the type of MDS they have.
In a small number of people who are young and fit, it may be possible to have a stem cell transplant from a donor. The aim of this is to cure the disease.
There are also some newer treatments available which may be used to help to control MDS.
You may be invited to join a clinical trial looking at new ways of treating MDS. Your haematologist can tell you about any trials that would be suitable for you.
If your white blood cells are low, you are at increased risk from infections|. Your specialist nurse or doctor will give you advice about reducing this risk. You may be prescribed antibiotics or anti-fungal treatments to treat or prevent infection.
Symptoms such as anaemia, or bruising and bleeding, are caused by low levels of healthy red blood cells or platelets in the blood. You can have blood transfusions| or platelet transfusions| to help improve your symptoms.
If you have a lot of blood transfusions, there is a risk of too much iron building up in your body. This is because red blood cells contain iron. High levels of iron can be harmful, and you may need treatment to reduce the amount in your body. Your doctor or nurse will explain more about this treatment if you need it.
It may be possible to boost the number of healthy red and white blood cells in your blood with blood cell growth factors.
A drug called erythropoietin| may be used to increase the amount of red blood cells in your blood and reduce the number of blood transfusions you need. It may also help control the disease.
G-CSF| is a drug which may be given to boost the number of white blood cells. Both of these drugs are usually given as injections under the skin (subcutaneously). Some people may benefit from having a combination of these drugs.
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 MDS. Your doctor can advise whether these drugs would be suitable for you.
Chemotherapy| is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It may be given to help control the disease and any symptoms.
Chemotherapy can be given as tablets or as an injection into a vein (intravenously). Your treatment may involve just one type of chemotherapy or a combination of drugs|.
The type of chemotherapy given will often depend on your age and how the disease is affecting you (the risk group).
Combinations of different chemotherapy drugs, similar to those used to treat acute leukaemia, may be used for people with high-risk MDS. The aim of this treatment is to remove all traces of MDS and get the bone marrow working normally (remission). This is intensive treatment that is usually only suitable for younger people because of its side effects.
A stem cell transplant from a donor may be a suitable treatment for a small number of people with MDS. This is called an allogeneic (donor) stem cell transplant|.
This is a very intensive treatment and is only usually considered for people under 65.
This treatment involves having high doses of chemotherapy or radiotherapy to destroy the unhealthy bone marrow. The donor's healthy stem cells are then put into your blood through a drip. These stem cells make their way to the bone marrow and start to produce red and white blood cells and platelets again.
Some people may have a stem cell transplant using their own stem cells, but this is usually done within a clinical trial.
A number of new treatments for MDS, or new ways of giving existing treatments, are currently being researched. Your doctor may invite you to take part in a clinical trial|.
This chemotherapy drug may be used for people with higher risk MDS who are unable to have a stem cell transplant. It may help the bone marrow to work more normally.
Azacitidine| is given as an injection under the skin (subcutaneously). Side effects include discomfort at the injection site, feeling sick (nausea)| and tiredness (fatigue)|. It also temporarily reduces the blood count.
This biological therapy affects the way the immune system works. It can be used to treat people with low-risk MDS. It is currently being tested on its own and with chemotherapy in people with high-risk MDS. Lenalidomide| is taken as a capsule by mouth.
These drugs may help control MDS and improve symptoms. Your haematologist can give you more information about them.
Everyone has their own way of dealing with their illness and the different emotions| they experience. You may find it helpful to talk things over with family and friends or your doctor or nurse. You can also contact our cancer support specialists| or the organisations listed below for more information and support.
Leukaemia & Lymphoma| Research provides information on the myelodysplastic syndromes and other blood disorders.
Leukaemia CARE| is a national group promoting the welfare of people with leukaemia and related blood disorders, including the myelodysplastic syndromes.
MDS UK Patient Support Group| is the only MDS dedicated patient support group in the UK. It offers networking opportunities, organises patient meetings, shares information and raises awareness across the UK.
This section has been compiled using information from a number of reliable sources, including:
For answers, support or just a chat, call the Macmillan Support Line free (Monday to Friday, 9am-8pm)
If you have any questions about cancer, need support or just want someone to talk to, ask Macmillan.