Kaposi's Sarcoma and AIDS: Care Instructions

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Your Care Instructions

Kaposi's sarcoma, or KS, is a cancer of the blood vessels under the skin or in the lymph nodes and other organs. Kaposi's sarcoma usually appears as pink or purple spots or bumps on the skin. KS occurs mainly in people who have a weak natural defence (immune) system, such as people who have AIDS. It may also occur in people who take medicine to keep the immune system from attacking an organ (such as a kidney) after a transplant.

In some cases, KS can block the normal flow of fluid through the lymphatic system. This is a part of the immune system. A buildup of fluid can make your arm or leg swell or feel heavy.

Your doctor may treat KS with surgery, medicines called chemotherapy (by pill or in a vein), radiation, or immune therapy.

Finding out that you have cancer is scary. You may feel many emotions and may need some help coping. Seek out family, friends, and counsellors for support. You also can do things at home to make yourself feel better while you go through treatment. Call the Canadian Cancer Society (1-888-939-3333) or visit its website at www.cancer.ca for more information.

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.
  • Follow your doctor's directions for treating your main illness, such as AIDS.
  • Eat healthy food. 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. Drink liquid meal replacements for extra calories and protein. Try to eat your main meal early.
  • If you have swelling of your arm or leg, try the following if your doctor says it is okay:
    • Prop up the sore arm or leg on a pillow when you ice it or anytime you sit or lie down during the next 3 days. Try to keep it above the level of your heart. This will help reduce swelling.
    • Wear compression stockings or bandages on the swollen leg or arm.
    • Get exercise to keep fluid moving.
    • Try massage to help reduce fluid buildup.
  • Wear gloves for gardening or yard work to prevent infection.
  • 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 through art. Try writing, crafts, dance, or art to relieve stress. Some dance, writing, or art groups may be available just for people who have cancer.
    • 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 can help reduce stress.
    • Get help if you need it. Discuss your concerns with your doctor or counsellor.

When should you call for help?

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

  • You have trouble breathing. (KS can affect the lungs.)

Watch closely for changes in your health, and be sure to contact your doctor or nurse call line if:

  • You have bleeding from your KS spots that you cannot stop easily.
  • You find other KS spots.
  • You have new swelling.

Where can you learn more?

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

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