Kaposi's Sarcoma

WHAT YOU SHOULD KNOW

Causes

Signs/Symptoms

Care

Risks

WHAT YOU SHOULD DO

• Always take your medicine exactly as directed. If it doesn't seem to help, let the doctor know, but keep taking it until told otherwise. If a medicine makes you drowsy, avoid driving or using dangerous machinery.
• Eat healthy foods from all 5 food groups: fruits, vegetables, breads, dairy products, meat and fish. This will help you feel better, increase your energy level, and promote faster healing. If you have trouble swallowing, try foods in soft or liquid form. If you can't bring yourself to eat, let your doctor know.
• It's important to get plenty of liquids, especially if chemotherapy makes you sick to your stomach. Drink 6 to 8 large glasses of liquid, such as water, juices, and milk, each day. Limit your intake of coffee, tea, soda, and other caffeinated beverages.
• You'll probably need more rest. Match your activity to the amount of energy you have. Nap a couple of times during the day, go to bed early, and get up late.
• Stress can slow healing and cause illness later. Since it's hard to avoid stress, learn to control it through deep breathing, muscle relaxation, meditation, or biofeedback. Talk to someone about things that upset you.

Call Your Doctor If...

• You run a high temperature.
• You develop a rash or itchy, swollen skin. This could be a sign of allergy to your medicine.
• You get a cough.
• You begin to have problems eating or swallowing.
• Your legs swell and you have trouble walking.

Seek Care Immediately If...

• You have an extremely high temperature.
• You have breathing problems.
• You begin to vomit blood.
• Your bowel movements are all black or all red.
• You feel too dizzy or weak to stand up.

IF YOU'RE HEADING FOR THE HOSPITAL...

What to Expect While You're There

• Taking Vital Signs: These include your temperature, blood pressure, pulse (counting your heartbeats), and respirations (counting your breaths). A stethoscope is used to listen to your heart and lungs. Your blood pressure is taken by wrapping a cuff around your arm.
• Activity: You may need to rest in bed for a while. But even if you are confined to bed, it's important to exercise your legs in order to stop blood clots from forming. Lift one leg off the bed and draw big circles with your toes, then repeat with the other leg. You can also try lying on your side and pretending to pedal a bike. When you're told it's OK to get out of bed, make sure someone is with you the first time you try. If you feel weak or dizzy, sit or lie down right away.
• Reverse Isolation: Because the HIV infection that underlies KS makes infection a great danger, you may be given a private room to protect you from other people's germs. While in the room, doctors and visitors may need to wear gloves, a mask, and a gown.
• Breathing: You may find it easier to breathe if you raise the head of your bed, rest your head on 3 or 4 pillows, or sit in a reclining chair. Saving your energy and resting more may also help your breathing.
• Postural Drainage: This treatment, also called PD, helps loosen the sputum in your lungs to make breathing easier. Using her hands or a small machine, a nurse will lightly thump your back and chest, then encourage you to cough.
• Heart Monitor: (Also called an electrocardiogram [e-LEK-tro-KAR-di-o-gram] or EKG). Typically, three to five sticky pads are placed on different parts of your body. Each pad has a wire that is hooked to a TV-type screen or to a small portable box (telemetry unit) that shows a tracing of each heartbeat.
• Strict Intake/Output: Your doctor may need to know the amount of liquid you are taking in versus the amount you lose in your urine. This is often called an "I&O."
• Unless told otherwise, drink 6 to 8 large glasses of water each day. Keep a record of exactly how much liquid you drink.
• Your output of urine may have to be measured. Ask your doctor whether it's OK to use the toilet.
• IV: A tube placed in your vein for giving medicine or liquids. It will be capped or have tubing connected to it.
• Medicines: A variety of drugs can be used to fight the cancer and its effects. They'll be given through an IV, as shots, or by mouth.
• Anti-Itching Medicines: While they can stop the itching, these drugs may also make you sleepy.
• Antiviral Medicines: To control the HIV infection that causes AIDS and leads to KS, your doctor may start you on one or more antiviral drugs.
• Pain Medicines: If the KS sores are painful, the doctor can prescribe one of these drugs. If the pain won't go away or comes back, let the doctor know.
• Oxygen: At times during your stay, your body may need extra oxygen. It is given either through a plastic mask over your mouth and nose or through nasal prongs. If the oxygen dries out your nose or the nasal prongs bother you, tell your nurse, but don't take off the oxygen on your own.
• Pulse Oximeter: With a little clip connected to your ear, finger, or toe, this machine measures the oxygen in your blood.
• Tests: You may need one or more of the following tests to help your doctors plan your treatment.
• Barium Enema: If the doctor needs x-ray pictures of your colon (lower bowel) you'll first be given a barium enema. This substance blocks x-rays, thereby outlining the colon. The barium is given through a tube inserted in the rectum.
• Barium Swallow: For x-ray pictures of the throat, gullet, and stomach, you'll need to drink a barium-containing liquid.
• Biopsy: To check for cancer, the doctor will remove a small piece of tissue from one of the discolored areas and send it to the lab. You'll be given a pain-killer before the procedure. The area will be bandaged afterwards.
• Blood Gases: This test measures the amount of oxygen, acids, and carbon dioxide in the blood---measurements that are especially important if you're having any trouble breathing. The blood sample for the test is taken from an artery in the wrist, elbow, or groin.
• Other Blood Tests: You may need additional blood taken for other tests. It can be drawn from a vein in your hand or from the bend in your elbow. Several samples may be needed.
• Bone Scan: Pictures taken during this test will help to reveal any infections or cancers in your bones. Before the test, you'll be given a small, safe amount of radioactive dye in an IV.
• Bronchoscopy (bron-KAH-skuh-pee): Your doctor may use a bronchoscope---a long tube with a light and magnifying glass on the end---to examine your airways and lungs. The scope can also be used to take tissue samples for testing.
• Chest X-ray: Doctors study this picture of your lungs and heart for signs of infection, pneumonia, or cancer.
• Sigmoidoscopy (sig-moid-OSS-kuh-p): This is an examination of the last parts of the bowel---the sigmoid colon and the rectum. The doctor will use a short scope with a magnifying glass and a light on the end to look for signs of cancer and other abnormalities.
• Colonoscopy (KOH-lun-OSS-kuh-p): For this examination, the doctor will insert a long, flexible, lighted tube through your rectum and on into your colon. The scope can reveal signs of cancer or infection, and can be used to take a tissue sample for tests. During the exam, the doctor also can remove small tumors or stop any bleeding he finds.
• CT Scan: This test, also called a "CAT" scan, uses a special type of x-ray machine. Before the test, you may be given dye through your IV to make the internal organs show up better in the pictures. People who are allergic to shellfish may be allergic to this dye. If you have this allergy, be sure to warn the doctor.
• EGD: This is an examination of the lining of your gullet, stomach, and duodenum (the section of intestine nearest the stomach). During the procedure, a long tube with a magnifying glass and light on the end will be threaded down your throat and into your stomach. A camera can be hooked to the tube. The exam can reveal the presence of internal KS.
• Lumbar Puncture: In this procedure, also called a spinal tap, a small amount of fluid is drawn from the area around your spine. Tests of the fluid can reveal infections of the spine and brain, and alert doctors to bleeding in the brain. The puncture can also be used to give medicines.
• Treatment Options: After the tests have been completed, your doctor may change your treatment if the KS is getting worse. You may have any of the following treatments alone or combination.
• Chemotherapy: In this type of therapy, called "chemo" for short, various potent drugs are given to attack cancer cells. The drugs can cure some cancers, and are used to shrink others before they are removed by surgery. The drugs are given by mouth, shot, or IV. They sometimes have severe side effects, and may further weaken your immune system, making infections more likely. In the long run, however, they can help extend your life.
• Radiation: This is another type of cancer therapy, in which x-rays or gamma rays are used to kill cancer cells or prevent them from spreading. Radiation may be used alone, along with chemotherapy, or after surgery, when it is given to kill any cancer cells that were missed during the operation. It can reduce pain, control bleeding, and shrink cancerous tumors. Doctors also treat cancerous lymph nodes with radiation.
• Surgery: The cancerous spots can be removed by local excision (cutting out the area and some of the surrounding tissue), cryotherapy (freezing the spot off), or electrodesiccation (burning the spot away).