Everyone with MDS will need supportive care at some stage, either alone or to support the treatment that you are receiving. Supportive care is not directed at the underlying disease but rather at controlling the symptoms and complications caused by the disease. The nature and extent of supportive care needed depend on which blood cells are most affected and exactly how low their blood levels fall. Most people will need blood transfusions at some stage.
Most people (but not all) diagnosed with MDS are anaemic. Although the anaemia is usually not life threatening, it can cause symptoms such as tiredness and shortness of breath. Anaemia may affect your quality of life and if so it will need treatment. Some people continue living a normal or acceptable quality life despite anaemia and will not necessarily need treatment for the anaemia at that stage. The haemoglobin (Hb) level in your blood results will show your level of anaemia.
Blood transfusions are considered if you have symptoms of anaemia. There is no set haemoglobin level at which a blood transfusion is given, but your doctor will assess your symptoms and you will decide together. How often you have transfusions will vary between different people; some need transfusions every few months, while others need one every couple of weeks. Usually, once you have started having regular blood transfusions, the length of time between transfusions will gradually get shorter. If you find that your symptoms of anaemia come back well before your next transfusion is due, contact your haematology team and discuss whether the interval between transfusions should be shorter, or the number of units of blood increased. This varies between people.
With every unit of blood you receive from a transfusion, you will receive an excess amount of iron. Over time, this can accumulate in your body and could possibly cause damage to certain organs, like your heart or liver. Because blood transfusions are rich in iron, it is important that you do not take additional iron tablets unless your doctor prescribes them. There is still considerable uncertainty whether too much iron in your body is always harmful. The level of iron in your body should be checked regularly, especially when you are on a regular transfusion program and you may need treatment for the build-up of excess iron. This is called iron chelation. There is currently uncertainty about the benefits of removing iron. Whether you are offered iron or not, iron chelation treatment will depend on the likely benefits versus the likely disadvantages in your individual case. This will be discussed with you before you make a decision start iron chelation.
Desferal is a drug to treat the build up of excess iron and is given as a continuous subcutaneous injection under your skin by a pump. There are special teams that can teach you how to administer the drug at home. Exjade is another iron chelator and comes in tablet form, making it easier for people with poor sight, problems of finger dexterity or a fear of needles.
However, in most cases, this is only available for people who cannot manage subcutaneous Desferal or who have serious side effects on Desferal. Both treatments have certain side effects and often need to be continued for a long period of time to be effective. Your doctor can advise you which drug will be best in your situation. Don’t hesitate to discuss your iron levels with your doctor at any time during your treatment.
Blood cell numbers can sometimes be increased by the use of growth factors. Growth factors are like natural ‘hormones’ that stimulate our blood production. We all make these growth factors every day. For example, erythropoietin (sometimes known as ‘EPO’) is a growth factor that increases red cell numbers. Granulocyte-colony stimulating factor (or ‘G-CSF’) increases white cell numbers. Not everyone is suitable for this treatment, and only some people will respond. Your doctor can advise you on your suitability for growth factors.
Growth factors are given as an injection under the skin. The number of injections you will need will vary from person to person. A district nurse can give them at home, or you (or a family member) can learn how to give the injections yourself. The skin around the injection site may become irritated, so it is best to regularly change the injection site. Do talk to your nurses about this and also the common side effects that you may expect.
About half of people with MDS will have a reduced platelet count at diagnosis (thrombocytopenia). The platelets may also function poorly and this means that bruising and bleeding can occasionally be a serious problem in MDS. Platelets can be transfused but because they only last about four days, they are usually only given if you have signs of bleeding. If you have low platelets, it is usually advisable to avoid blood-thinning agents and non-steroidal anti-inflammatory drugs. However this should be discussed with your doctor as there are exceptions where the benefit you will receive from these drugs outweighs the risks.
Most hospitals will not transfuse unless the platelet level drops below 10, and some hospitals will not routinely give platelet transfusion. When you have an infection, are on blood thinners or have suffered from bleeding, you might benefit from having platelets kept at a higher level (having a transfusion earlier than normal). Your doctor or nurse will inform you when this is necessary.
It is important for you to understand that people with MDS have a higher risk of developing infections. Antibiotics are not usually given to prevent infections as they cause side effects and may cause the bacteria to become resistant. If you do get an infection, this should be treated quickly with antibiotics, and you may need to be admitted into hospital so that the antibiotics can be given through a vein (intravenous). Most specialist units will have a direct phone number to call for advice in the event of a fever occurring.