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Myelodysplastic syndromes (MDS) treatment and side effects

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Myelodysplastic syndromes (MDS) supportive care

Supportive care does not target MDS itself. Instead, the aim is to control the symptoms of MDS so you can have a better quality of life.

Some people with MDS just have supportive care, while others have supportive care along with other types of treatment.

Growth factors

Growth factors are drugs that encourage your bone marrow to make more blood cells. There are two types of growth factor used for people with MDS:

  • erythropoietin (EPO) can increase red blood cell numbers
  • granulocyte-colony stimulating factor (G-CSF) can increase white blood cell numbers

You usually have growth factors as injections under the skin on your tummy, thigh or upper arm. A member of your hospital team can teach you or a family member to do the injections. Or they can arrange for a district nurse to visit you at home to give them.

Blood transfusions

Many people with MDS need blood transfusions to increase their number of healthy blood cells. During a blood transfusion, you will be given blood that has been donated by someone else. The blood is usually given to you through a plastic tube into a vein in your arm. There are two types of blood transfusion to treat MDS symptoms: red blood cell transfusions and platelet transfusions.

This is the most common type of blood transfusion for people with MDS. You might need red blood cell transfusions if you’re having symptoms caused by low levels of red blood cells (anaemia). These symptoms can include tiredness and shortness of breath.

Some people need transfusions every few months. Others need one every week or so. Usually, once you start having regular blood transfusions, the length of time between transfusions will gradually get shorter.

You should notice your symptoms of anaemia improve after you’ve had a transfusion, although it might not happen straight away. Sometimes it can take a few days before you start to feel better.

If you find that your symptoms of anaemia come back well before your next transfusion is due, let your hospital team know. They might decide to shorten the time between transfusions, or increase the amount of blood they give you.

Platelets help your blood to clot. They stick together to stop bleeding if you have a cut or a bruise. You may need a platelet transfusion if your level of platelets is too low and you have bleeding.

"I found it quite surreal, knowing that someone else's blood was going into my body. But I really appreciated the transfusions when I needed them, as I felt so much better afterwards."

Emma, diagnosed with MDS in 2011

Emma, diagnosed with MDS in 2011

Managing iron levels

Red blood cell transfusions contain a lot of iron. If you need frequent red blood cell transfusions, you may have a build up of iron in your body. This could cause health problems later in life, so your hospital team will monitor your iron levels.

If your iron levels are too high, you might need to take medicine to reduce the amount of iron in your blood. This is called iron chelation. Examples of iron chelation drugs are:

  • desferrioxamine – this is given as a drip (a thin tube into your vein)
  • deferasirox – these are tablets you take by mouth

Treatment for infections

People with MDS have a higher risk of developing infections. If you get an infection, it’s very important to get treatment quickly. The treatment you have will depend on the type of infection, but could include:

  • antibiotics – to treat bacterial infections
  • antivirals – to treat infections caused by a virus
  • antifungals – for fungal infections

Ask your hospital team if there’s a phone number you should call if you develop signs of an infection. You might need to go into hospital to have medicine given through a vein.

If your doctor thinks you are at especially high risk of getting an infection, they might prescribe you antibiotics, antivirals or antifungals as a precaution, to prevent infections. This is called prophylaxis.

Your emotional health

For many people, having MDS can have a big emotional impact. Your hospital team should regularly ask you about your emotional health and offer you support. The support they offer will depend on your needs, but could include referring you for counselling or other types of psychological support.

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