Myelodysplasia (MDS)

1 type of blood cell has become abnormal.

2 or more types of blood cell have become abnormal.

Some of the cells in the bone marrow have small specks of iron inside them. These cells are called ring sideroblasts.

The number of blast cells in the blood and bone marrow is higher than normal.

The cells in the bone marrow have a genetic change called isolated del (5q).

This includes any type of MDS that does not fit into any of the above categories. If you have one of these, your haematology team can explain more about it.

In most cases, the cause of MDS is unknown. This is called primary MDS.

A small number of people develop MDS after treatment with chemotherapy or radiotherapy. This is called secondary or therapy-related MDS (t-MDS).

This blood test counts the numbers of red blood cells, white blood cells and platelets in your blood.

Your doctor may want to take a sample of bone marrow to look at under a microscope. This is called a bone marrow biopsy. Doctors usually remove the sample from the back of the hip bone (pelvis).

The sample is sent to a laboratory to be checked for abnormal cells.

A doctor examines the chromosomes inside the bone marrow cells that are taken during your bone marrow biopsy. This is called cytogenetic testing.

Chromosomes are groups of genes. Genes carry the instructions for cells and control how they work and behave. Genetic changes can help predict how the MDS might behave over time.

You may feel weak, tired or breathless. This is caused by low levels of red blood cells (anaemia). Or you may have abnormal bruising and bleeding caused by a low platelet count. You can have blood transfusions or platelet transfusions to help improve these symptoms.

If your white blood cell count is low, you are at increased risk of infection. Your clinical nurse specialist or haematologist will give you advice about avoiding infection. 

Growth factors may help to increase the number of healthy red and white blood cells in your blood. Growth factors are made naturally by the body. But they can be made as a drug to stimulate the bone marrow to make more blood cells:

• Erythropoietin (EPO) stimulates the bone marrow to make more red blood cells. It can help treat the symptoms of anaemia and reduce the number of blood transfusions you need.
• G-CSF stimulates the bone marrow to make more white blood cells. This can help prevent infection.

Both of these treatments are given as injections under the skin (subcutaneously). A nurse can sometimes teach you how to give them yourself.

Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. It can be given to help control MDS. The aim is to get the bone marrow working better.

The type of chemotherapy you have depends on your general health, your risk group and how MDS affects you.

Chemotherapy can be given as an outpatient or during a short stay in hospital. You usually have chemotherapy as an injection into a vein (intravenously). It is sometimes given as an injection under the skin. You may have a single drug. Or you may have 2 or more drugs together – this is called combination chemotherapy.

Azacitidine is a chemotherapy drug for people with higher-risk MDS who are not able to have, or do not want, more intensive treatment. Azacitidine is given as an injection under the skin. Side effects include problems such as pain or redness at the injection site, feeling sick and feeling tired. It can also reduce your blood cell count for a short time. This can cause an increased risk of infection, anaemia and abnormal bruising or bleeding.

High doses of chemotherapy may be offered to people with higher-risk MDS. This treatment is also used to treat acute leukaemia. You need to stay in hospital for several weeks to have this.

If this treatment works well, you may be able to have a donor stem cell transplant afterwards.

A small number of people with higher-risk MDS may be able to have a donor stem cell transplant. This treatment replaces bone marrow that is no longer working properly with healthy stem cells from another person (donor). These new stem cells make healthy red and white blood cells and platelets.

This treatment can sometimes cure MDS. But it can also cause serious side effects, so it is not suitable for most people. Your general health needs to be good. Your haematologist will talk to you about the risks and benefits of donor stem cell treatment if this is a possibility for you.

If you have MDS associated with isolated del (5q), you may have a drug called lenalidomide (Revlimid®). Lenalidomide comes as capsules. You usually take it for 21 days and then have a break for 7 days. Then you repeat that cycle. Lenalidomide works in several different ways to target abnormal blood cells. It is a type of targeted therapy and a type of immunotherapy.

Drugs that suppress the immune system can sometimes improve the blood count in people with MDS. They include anti-thymocyte globulins (ATGs) and ciclosporin.

Doctors are always researching new treatments for MDS or new ways of giving existing treatments. Your haematologist or clinical nurse specialist might talk to you about taking part in a clinical trial if this is suitable for you.