Please Note: Due to volume considerations, not all questions can be answered. Questions most likely to be answered will be those of general interest to a broad group of visitors to this forum. Questions pertaining to a specific case; requests for diagnosis, medical advice, or second opinion; or requests for opinions about untested alternative therapies will generally not be answered.
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KS
Dec 18, 2000
I have a female friend who was recently diagnosed with KS. Everything that I have found refers to AIDS/HIV. Is it possible to have KS and be HIV negative? She has never been tested for HIV or AIDS as far as I know. Her doctor has advised cancer treatment. Can you tell me anything else?
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Response from Dr. Feinberg
KS is most commonly associated with HIV, so she should be tested for HIV as soon as possible. It is possible to get KS without having HIV, but this occurs primarily in older men with Mediterranean area ancestry and gay men who are HIV-, since the virus that causes KS (called HHV8 for human herpes virus type 8) can be acquired sexually. Actually, KS is quite unusual in women, even those with HIV. Before she agrees to chemotherapy, she should get an HIV test and strongly consider a combination of HIV medications (the "cocktail"), because KS has resolved in some people with treatment of the HIV alone when it only affects the skin. There are forms of KS which can affect deeper organs, such as the lung, and this probably requires chemotherapy in addition to the HIV meds.
Testing for HIV is crucial, because if she's HIV+ she should receive her HIV care from someone expert in this field. Some experts have been trained in oncology (cancer) and would be capable of administering the chemotherapy if it's needed, or an HIV expert could work together with an oncologist to coordinate her care.
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