Myelodysplastic Syndromes: Care Instructions

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Myelodysplastic syndromes, also called MDS, are a group of cancers in which the bone marrow does not make enough healthy blood cells. Normally, the bone marrow makes red blood cells, white blood cells, and platelets. These cells carry oxygen in the blood, help the body fight infections, and help the blood clot. With MDS, you may feel weak and tired, get infections often, and bleed easily, although symptoms tend to vary.

MDS is a form of blood cancer. In some cases, MDS can turn into acute myeloid leukemia (AML), another type of cancer. Some people develop MDS after treatment for cancer or exposure to pesticides or other chemicals. But in most cases, the cause of MDS is not known.

Your doctor will use the results of tests, including blood tests, to guide your treatment. There are many types of MDS, with different treatment plans for each. If you have enough red blood cells and are feeling all right, you may not need active treatment, but you and your doctor will want to watch your condition carefully. If you start feeling lightheaded and have no energy, you may need a blood transfusion. Other treatments include medicines like chemotherapy and stem cell transplants.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

  • Take your medicines exactly as prescribed. Call your doctor if you think you are having a problem with your medicine.
  • Eat a variety of healthy foods. If you do not feel like eating, try to eat food that has protein and extra calories to keep up your strength and prevent weight loss.
  • Get some physical activity every day, but do not get too tired.
  • Get enough sleep and take time to do things you enjoy. This can help reduce stress.
  • Think about joining a support group. Or discuss your concerns with your doctor, counselor, or other health professional.
  • Do not smoke. Smoking can make blood problems worse. If you need help quitting, talk to your doctor about stop-smoking programs and medicines. These can increase your chances of quitting for good.
  • If you have not already done so, prepare a list of advance directives. Advance directives are instructions to your doctor and family members about what kind of care you want if you become unable to speak or express yourself.

When should you call for help?

Call 911 anytime you think you may need emergency care. For example, call if:

  • You passed out (lost consciousness).
  • You have sudden chest pain and shortness of breath, or you cough up blood.

Call your doctor now or seek immediate medical care if:

  • You have a fever or chills. Or you may be sweating.
  • You have abnormal bleeding.
  • You have new or worse pain.
  • You think you have an infection.
  • You have new symptoms, such as a cough, belly pain, vomiting, diarrhea, or a rash.
  • You have signs of a blood clot, such as:
    • Pain in your calf, back of the knee, thigh, or groin.
    • Redness and swelling in your leg or groin.

Watch closely for changes in your health, and be sure to contact your doctor if you have any symptoms that the cancer has come back or spread. These symptoms include:

  • New lumps.
  • Bone pain.
  • Chest pain.
  • Shortness of breath.
  • Belly pain.
  • Headaches that don't go away.

The Health Encyclopedia contains general health information. Not all treatments or services described are covered benefits for Kaiser Permanente members or offered as services by Kaiser Permanente. For a list of covered benefits, please refer to your Evidence of Coverage or Summary Plan Description. For recommended treatments, please consult with your health care provider.