Myelodysplastic Syndromes: Care Instructions

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Your Care Instructions

Myelodysplastic syndromes, also called MDS, are a group of rare conditions 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 bruise 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 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 light-headed and have no energy, you may need a blood transfusion. Your doctor also may give you antibiotics to prevent or treat infection.

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 or nurse call line 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 or nurse call line if you think you are having a problem with your medicine. You will get more details on the specific medicines your doctor prescribes.
  • If your doctor prescribed antibiotics, take them as directed. Do not stop taking them just because you feel better. You need to take the full course of antibiotics. If you have side effects from antibiotics, tell your doctor.
  • Take steps to control your stress and workload. Learn relaxation techniques.
    • Share your feelings. Stress and tension affect our emotions. By expressing your feelings to others, you may be able to understand and cope with them.
    • Consider joining a support group. Talking about a problem with your spouse, a good friend, or other people with similar problems is a good way to reduce tension and stress.
    • Express yourself with art. Try writing, crafts, dance, or art to relieve stress.
    • Be kind to your body and mind. Getting enough sleep, eating a healthy diet, and taking time to do things you enjoy can contribute to an overall feeling of balance in your life and help reduce stress.
    • Get help if you need it. Discuss your concerns with your doctor or counsellor.
  • 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 an advance care plan. An advance care plan provides instructions to your doctor and family members about what kind of care you want if you become unable to speak or express yourself.
  • Call the Canadian Cancer Society (1-888-939-3333) or visit its website at www.cancer.ca for more information.

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 vomit blood or what looks like coffee grounds.
  • You pass maroon or very bloody stools.

Call your doctor or nurse call line now or seek immediate medical care if:

  • Your stools are black and tar-like or have streaks of blood.
  • You have any unusual bleeding, such as:
    • Blood spots under the skin.
    • A nosebleed that you cannot stop.
    • Bleeding gums when you brush your teeth.
    • Blood in your urine.
    • Vaginal bleeding when you are not having your period, or heavy period bleeding.
  • Your fatigue and weakness continue or get worse.
  • You have signs of infection, such as:
    • Increased pain, swelling, warmth, or redness.
    • Red streaks leading from a sore.
    • Pus draining from a sore.
    • A fever.

Watch closely for changes in your health, and be sure to contact your doctor or nurse call line if you have any problems.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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