Kaposi's Sarcoma

WHAT YOU SHOULD KNOW:

Kaposi's Sarcoma (Discharge Care) Care Guide

  • Kaposi sarcoma, also called KS, is a type of skin cancer. This cancer is most common in people who have the human immunodeficiency virus (HIV) or acquired immunodeficiency disease (AIDS). People who have had an organ transplant may also get KS. You can get KS without having had an organ transplant, HIV, or AIDS. A virus called human herpes virus-8 (HHV-8) may lead to KS when your immune system is weak. The immune system fights infection in the body. KS may appear on any part of your skin. It can also be found in your lymph nodes, stomach, intestines, liver, spleen, lungs, and bones. This disease may remain in one area on your skin and need very little treatment, or it may spread to other areas or organs. KS may spread quickly through your body or may stay unchanged for a long time.

  • KS may appear on your skin as blue, red, purple, or brown spots (lesions) anywhere on your body. The lesions and the area around them may be painful and swollen. The lesions may also be in your mouth, lymph nodes, stomach, intestines, liver, spleen, lungs, or bones. Caregivers will examine you and do tests to learn if you have KS and where it is in your body. Tests may include taking samples of blood or tissue (biopsy), x-rays, computed tomography (CT) scan, or ultrasound. Treatment depends on your signs and symptoms and on where the lesions are. Treatments may include medicine, radiation therapy, cryotherapy (freezing the lesions), or surgery. These treatments may kill cancer cells, strengthen your immune system, or fight HHV-8 and HIV. Treatment for KS may decrease the size and amount of lesions on or in your body. It may also decrease symptoms, such as pain and swelling.

AFTER YOU LEAVE:

Medicines:

  • Keep a current list of your medicines: Include the amounts, and when, how, and why you take them. Take the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency. Throw away old medicine lists. Use vitamins, herbs, or food supplements only as directed.

  • Take your medicine as directed: Call your primary healthcare provider if you think your medicine is not working as expected. Tell him about any medicine allergies, and if you want to quit taking or change your medicine.

  • Pain medicine: You may need medicine to take away or decrease pain.

    • Learn how to take your medicine. Ask what medicine and how much you should take. Be sure you know how, when, and how often to take it.

    • Do not wait until the pain is severe before you take your medicine. Tell caregivers if your pain does not decrease.

    • Pain medicine can make you dizzy or sleepy. Prevent falls by calling someone when you get out of bed or if you need help.

  • Highly active antiretroviral therapy: If you have the human immunodeficiency virus (HIV) or acquired immunodeficiency disease (AIDS) and Kaposi sarcoma, your treatment may include highly active antiretroviral therapy (HAART). This therapy uses three or more medicines that work together to stop HIV from growing. If HIV stops growing, then human herpes virus-8 (HHV-8) may also stop growing.

  • Topical chemotherapy: Chemotherapy is often called "chemo". The word topical means it is put on the skin as a lotion or cream. This medicine is used to treat cancer that is in the outer layers of the skin. Topical chemotherapy is put on to kill cancer cells. While being treated, your skin may hurt and look very red.

Ask for information about where and when to go for follow-up visits:

For continuing care, treatments, or home services, ask for more information.

Eat a healthy diet:

Eat a balanced diet, including protein and fiber. Ask your caregiver if you should make changes to what you eat, or if you should follow a special diet. If you have dry mouth, drinking liquids while you eat may help make it easier to chew and swallow.

Practice good mouth care:

Brush your teeth twice daily. Floss your teeth regularly, and use mouthwash. This may decrease problems that can come with KS, including having mouth pain and dryness and trouble eating and swallowing. Keep your teeth and mouth clean. This may help you enjoy eating more, so you can get enough of the nutrients (vitamins and minerals) that you need.

Wear support stockings and elevate your legs:

If you have swelling in your legs or feet, your caregiver may tell you to wear support stockings. These are also called compression garments. The stockings put pressure on your feet and legs and may decrease swelling and pain. Support stockings are often worn during the day and are removed at night. Ask caregivers how to take care of your skin while wearing support stockings. Raising your legs up on pillows while sitting or lying down may also decrease swelling. Ask your caregiver about other treatments that may be done to decrease swelling.

Get enough exercise:

Physical therapy treatments can help you walk if you are having trouble moving around. A special caregiver called a physical therapist can show you exercises to help you move more easily and with less pain. You may be fitted with special shoes or shoe inserts. Ask caregivers to help you plan an exercise program to follow at home.

Avoid spreading human herpes virus-8:

Use a condom during sexual intercourse. This may prevent spreading human herpes virus-8 (HHV-8) to your partner. Deep kissing may spread HHV-8 through your saliva. Spreading this virus to someone who has a weak immune system may increase that person's risk of getting KS. Do not use street (illegal) drugs. Do not use drugs that are injected into your vein. Do not use a dirty needle or share needles with anyone or at any time.

For more information:

If you have HIV or AIDS, ask caregivers for more information about ways to manage this disease. For more information about KS, contact the following:

  • American Cancer Society
    250 Williams Street
    Atlanta , GA 30303
    Phone: 1- 800 - 227-2345
    Web Address: http://www.cancer.org
  • National Cancer Institute
    6116 Executive Boulevard, Suite 300
    Bethesda , MD 20892-8322
    Phone: 1- 800 - 422-6237
    Web Address: http://www.cancer.gov

CONTACT A CAREGIVER IF:

  • You have a fever.

  • You feel more tired or weak or have new signs or symptoms after starting a medicine or treatment.

  • Your hands and feet are itchy, swollen, or painful, or they tingle or are numb (lose feeling).

  • The lesions on your skin are more painful or itchy, they are changing color or bleeding, or you are getting new or more lesions.

  • Your legs are swollen and painful, and you are having problems walking.

SEEK CARE IMMEDIATELY IF:

  • You are coughing or having trouble breathing, or you are coughing up blood.

  • You are having more trouble eating or swallowing, or you are nauseated (feeling sick) or vomiting (throwing up).

  • You keep having diarrhea or constipation, or there is blood in your stool.

  • You have headaches or bone pain, or you suddenly lose control over when you urinate.

© 2013 Truven Health Analytics Inc. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes. All illustrations and images included in CareNotes® are the copyrighted property of A.D.A.M., Inc. or Truven Health Analytics.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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