Kaposi Sarcoma and AIDS: Care Instructions


Kaposi sarcoma (KS) is a cancer that affects the skin, nose, throat, and the lining of the mouth. It may also affect other body tissues, including lymph nodes, lungs, and gastrointestinal tract. It often appears as purple spots or bumps on the skin.

KS occurs mainly in people who have a weak natural defense (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.

KS can appear in more than one place in the body. When it affects your lymph nodes, it can cause swelling of your arms, legs, or other parts of your body.

Your doctor may treat KS with medicines, radiation, surgery, or chemotherapy.

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.
  • 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 counselor.

When should you call for help?

Call your doctor now or seek immediate medical care if:

  • You are short of breath.
  • You have new or worse belly pain.
  • You have signs of infection, such as:
    • Increased pain, swelling, warmth, or redness.
    • Red streaks leading from the area.
    • Pus draining from the area.
    • A fever.

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

  • You find new KS spots.
  • You do not get better as expected.

Where can you learn more?

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

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