AIDS INFORMATION NEWSLETTER Michael Howe, MSLS, Editor AIDS Information Center VA Medical Center, San Francisco (415) 221-4810 ext 3305 June 14, 1996 Opportunistic Infections (Part XXVI) AIDS-Related Lymphoma - Patient Information CancerNet from the National Cancer Institute Information from PDQ for Patients Last Modified February, 1996 DESCRIPTION What is AIDS-related lymphoma? Acquired Immunodeficiency Syndrome (AIDS) is caused by a virus called the Human Immunodeficiency Virus (HIV), which attacks and weakens the immune system. Infections and other diseases can then invade the body, and the immune system cannot fight against them. AIDS-related lymphoma is a disease in which cancer (malignant) cells are found in the lymph system in patients who have AIDS. The lymph system is made up of thin tubes that branch, like blood essels, into all parts of the body. Lymph vessels carry lymph, a colorless, watery fluid that contains white blood cells called lymphocytes. Along the network of vessels are groups of small, bean-shaped organs called lymph nodes. Clusters of lymph nodes make and store infection-fighting cells. The spleen (an organ in the upper abdomen that makes lymphocytes and filters old blood cells from the blood), the thymus (a small organ beneath the breastbone), and the tonsils (an organ in your throat) are also part of the lymph system. Since there is lymph tissue in many parts of your body, the cancer can start in almost any part of your body and spread to almost any organ or tissue. This includes your liver, bone marrow (the spongy tissue inside the large bones of your body that makes blood cells), your spleen, or your brain. Lymphomas are divided into two general types: Hodgkin's disease and non-Hodgkin's lymphomas. Either type may occur in AIDS patients. The cancer cells in Hodgkin's disease look a certain way under a microscope. Non-Hodgkin's lymphoma is treated differently than Hodgkin's disease, and both can occur in adults or children. Information on both types of lymphomas in persons without AIDS can be found in the PDQ patient information statements on Hodgkin's and non-Hodgkin's lymphomas (adult or childhood). There are about ten different types of non-Hodgkin's lymphomas. Some types spread more quickly than others. The type is determined by how the cancer cells look under a microscope, which is called the histology. The histologies are grouped together, based on how quickly they spread, into low-grade, intermediate-grade, or high-grade lymphomas. The most common AIDS-related lymphomas are intermediate- or high-grade lymphomas. These lymphomas grow and spread faster than low-grade lymphomas. Like most cancers, non-Hodgkin's lymphoma and Hodgkin's disease are best treated when found (diagnosed) early. You should see your doctor if you have any of the following for more than two weeks: painless swelling in the lymph nodes in the neck, underarm, or groin; fever that doesn't go away; night sweats; feeling tired all the time; weight loss without dieting; or itchy skin. If you have AIDS and symptoms of lymphoma, your doctor will examine you carefully and check for swelling or lumps in your neck, underarms, and groin. If the lymph nodes don't feel normal, your doctor may need to cut out a small piece and look at it under the microscope to see if there are any cancer cells. This is called a biopsy. In general, patients with AIDS-related lymphoma respond to treatment differently from patients with lymphoma who do not have AIDS. AIDS-related lymphoma usually grows faster and spreads outside of the lymph nodes and to other parts of the body more often than lymphoma not related to AIDS. Patients with AIDS-related lymphoma are generally treated with lower drug doses than patients without AIDS because therapy can damage their weak immune systems even further. STAGE EXPLANATION -- Stages of AIDS-related lymphoma -- Once AIDS-related lymphoma is found, more tests will be done to find out if the cancer has spread from where it started to other parts of the body. This is called staging. The stage of a disease, ranging from stage I to stage IV, gives an indication of how far the disease has spread. Your doctor needs to know the stage of your disease to plan treatment. Your doctor may determine the stage of your disease by examining you and doing blood tests and different kinds of x-rays. This is called clinical staging. In some cases, your doctor may need to do an operation called a laparotomy to determine the stage of your cancer. During this operation, your doctor cuts into your abdomen and carefully looks at the organs inside to see if they contain cancer. Your doctor will cut out (biopsy) small pieces of tissue during the operation and look at them under a microscope to see whether they contain cancer. This type of staging is called pathological staging. Pathological staging is usually done only when it is needed to help your doctor plan treatment. For treatment, AIDS-related lymphomas are grouped based on where they started, as follows: -- Systemic/peripheral lymphoma -- Lymphoma has started in lymph nodes or other organs of the lymph system. The lymphoma may have spread from where it started throughout the body, including to the brain or bone marrow. -- Primary CNS lymphoma -- Lymphoma has started in the brain or spinal cord, both of which are part of the central nervous system (CNS). This type of lymphoma is called a "primary CNS lymphoma" because it starts in the CNS rather than starting somewhere else in the body and spreading to the CNS. TREATMENT OPTION OVERVIEW ** -- How AIDS-related lymphoma is treated -- The treatment of AIDS-related lymphoma is difficult because of the problems caused by HIV infection, which weakens the immune system. The doses used are often lower than doses given to patients without AIDS. Two types of treatment are used: * chemotherapy (using drugs to kill cancer cells and shrink tumors). * radiation therapy (using high-dose x-rays or other high-energy rays to kill cancer cells and shrink tumors). Additionally, clinical trials are testing the effect of giving drugs to kill the AIDS virus (antiviral therapy) in addition to treatment for lymphoma. Chemotherapy uses drugs to kill cancer cells and shrink tumors. Chemotherapy may be taken by pill, or it may be put into the body by a needle in a vein or muscle. Chemotherapy is called a systemic treatment because the drugs enter the bloodstream, travel through the body, and can kill cancer cells throughout the body. Chemotherapy may be put into the fluid that surrounds the brain through a needle in the brain or back (intrathecal chemotherapy) to treat non-Hodgkin's lymphoma that has spread to the brain. Radiation therapy uses high-energy x-rays to kill cancer cells and shrink tumors. Radiation for non-Hodgkin's lymphoma usually comes from a machine outside the body (external beam radiation therapy). Radiation given to the brain is called cranial irradiation. Radiation therapy may be used alone or in addition to chemotherapy. Treatment for AIDS-related lymphomas depends on the stage of your disease, the histology and grade of the disease, and your general health. Your doctor must take into account how low your white blood counts are and the other diseases caused by AIDS you have had or currently have. You may receive treatment that is considered standard based on its effectiveness in a number of patients in past studies, or you may choose to go into a clinical trial. Not all patients are cured with standard therapy and some standard treatments may have more side effects than are desired. For these reasons, clinical trials are designed to find better ways to treat cancer patients and are based on the most up-to-date information. If you want more information, call the Cancer Information Service at 1-800-4-CANCER (1-800-422-6237) or the AIDS Clinical Trials Information Service at 1-800-342-AIDS (1-800-342-2437). AIDS-RELATED PERIPHERAL/SYSTEMIC LYMPHOMA Your treatment may be one of the following: 1. Standard-dose systemic chemotherapy plus intrathecal chemotherapy. 2. Low-dose systemic chemotherapy plus intrathecal chemotherapy. 3. A clinical trial of new types of chemotherapy or new ways of giving chemotherapy. AIDS-RELATED PRIMARY CNS LYMPHOMA Your treatment will probably be cranial radiation therapy. You may want to consider taking part in a clinical trial of new types of treatment. TO LEARN MORE TO LEARN MORE..... CALL 1-800-4-CANCER and 1-800-342-AIDS To learn more about AIDS-related lymphomas, call the National Cancer Institute's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237). By dialing this toll-free number, you can speak with someone who can answer your questions. The Cancer Information Service can also send you free booklets. The following booklet about adult non-Hodgkin's lymphoma may be helpful to you: What You Need To Know About Non-Hodgkin's Lymphomas The following general booklets on questions related to cancer may also be helpful: What You Need To Know About Cancer Taking Time: Support for People with Cancer and the People Who Care About Them What Are Clinical Trials All About? Chemotherapy and You: A Guide to Self-Help During Treatment Radiation Therapy and You: A Guide to Self-Help During Treatment Eating Hints for Cancer Patients Advanced Cancer: Living Each Day When Cancer Recurs: Meeting the Challenge Again There are many other places where you can get material about cancer treatment and services to help you. You can check the social service office at your hospital for local and national agencies that help with your finances, getting to and from treatment, care at home, and dealing with your problems. The American Cancer Society, for example, has many free services. Their local offices are listed in the white pages of the telephone book. You can also write to the National Cancer Institute at this address: National Cancer Institute Office of Cancer Communications 31 Center Drive, MSC 2580 Bethesda, MD 20892-2580 For more information on services for AIDS patients, you can call the AIDS hotline at 1-800-342-AIDS (1-800-342-2437). Additional information on clinical trials for AIDS patients can be obtained by calling the AIDS Clinical Trials Information Service at 1-800-TRIALS-A (1-800-874-2572) or by writing to the service at the following address: AIDS Clinical Trials Information Service P.O. Box 6421 Rockville, MD 20850