I am a longterm (20 year) HIV survivor and have been on antivirals the entire time. I have never had an opportunistic infection but was just diagnosed with KS. I've read of the study in SF where KS is coming back but unable to find out much about how it may be different now. Any thoughts?
I'll reprint some information below from the archives about Kaposi's sarcoma (KS) in general and also concerning the new cases recently described in San Francisco.
The new cluster of cases is indeed unsettling and unexpected, because all 15 patients in the cluster were long-term survivors on HAART and their HIV infections were firmly under control. The one piece of encouraging information is that these new cases of KS are not at all like the very aggressive disease seen early in the epidemic. These cases are behaving more like the KS described in the pre-AIDS era. They appear as patches of unsightly purple skin caused by a proliferation of blood vessels which are painless. They have not spread to internal organs or become aggressive. This type of KS is relatively common in older men in certain countries around the Mediterranean Sea. The classic KS as well as the aggressive AIDS-related KS is caused by a herpes virus, HHV8 (described by researchers at Columbia University in 1994).
So the answer to your question do the recent cases differ from the KS of the "bad old days" early in the AIDS pandemic? is yes. These cases are more like the classic non-aggressive KS we saw pre-AIDS. These cases are also occurring in folks whose HIV infection is well controlled and who have been on treatment for many years. These characteristics make these new cases quite distinct from what we were seeing in the early 80s.
Kaposi's Sarcoma (KS) May 13, 2007
What Is KS?
Kaposi's sarcoma (KS) is a cancer-like disease. It originally was known as a disease affecting elderly men of Eastern European or Mediterranean background. KS also occurs in African men and people with a weakened immune system. The most common cause of KS now is HIV infection. KS usually shows up in the skin, or in the linings of the mouth, nose, or eye. KS can also spread to the lungs, liver, stomach and intestines, and lymph nodes. KS involves the development of many new, tiny blood vessels. This process is called angiogenesis. KS is caused by a herpes virus called Human Herpes Virus 8 (HHV-8). In a recent study, men with HHV-8 were nearly 12 times more likely to be diagnosed with KS than men who did not have HHV-8.
KS affects about 20% of people with AIDS who aren't taking anti-HIV drugs. The rate of KS has dropped by over 80% since the introduction of strong antiretroviral therapy (ART).
KS is mostly a disease of men: there are at least 8 men with KS for each woman. It is one of the most visible signs of AIDS, because it usually shows up as spots on the skin (lesions) that look red or purple on white skin, and bluish, brownish or black on dark skin. Lesions often occur on the face, arms and legs.
KS on the skin is not life threatening. However, KS lesions on the feet and legs can make it difficult to walk. If KS spreads to other parts of the body, it can cause serious problems. In the mouth lining, it can cause trouble eating and swallowing. In the stomach or gut, it can cause internal bleeding and blockages. If KS blocks lymph nodes, it can cause severe swelling of the arms, legs, face, or scrotum. The most serious form of KS is in the lungs, where it can cause a serious cough, shortness of breath, or an accumulation of fluid that can be fatal.
KS can often be diagnosed by looking at the skin lesions. They are usually flat, painless, and do not itch or drain. They can look like a bruise, but a bruise will lose its purple color if you push on it; a KS lesion won't. KS lesions can grow into raised bumps or patches and grow together. Your health care provider might take a small sample (a biopsy) from skin spots to examine under a microscope and confirm a diagnosis of KS.
How Is KS Treated?
Strong ART is the best treatment for active KS. In many people, ART can stop the growth or even clear up skin lesions. In addition to ART, there are different treatments for KS in the skin or in other parts of the body. In the skin, KS may not have to be treated if there are only a few lesions. Skin lesions can be:
Frozen with liquid nitrogen.
Treated with radiation.
Cut out surgically.
Injected with anti-cancer drugs or interferon alpha.
Treated with Panretin gel (retinoic acid). These treatments only deal with the skin lesions, not with KS overall. Skin lesions may come back after treatment.
If KS has spread into internal organs, systemic (whole-body) drug treatment is used. If ART is not enough, the drugs doxorubicin (Doxil®,) daunorubicin (DaunoXome®) or paclitaxel (Taxol®) may be added.
Doxil and DaunoXome are anti-cancer drugs in "liposomal" form. "Liposomal" means that tiny amounts of drug are encased in small fat bubbles (liposomes). The drugs last longer in this form and seem to move to the areas where they're needed. Some side effects are reduced with liposomal forms of drugs.
Can KS Be Prevented?
It is not clear how HHV-8 spreads. It might be spread through sexual activity and deep kissing. As with other opportunistic infections, a healthy immune system can control HHV-8 infection. The best way to prevent KS is by using strong anti-HIV medications to keep your immune system strong.
What Else Is Being Studied for KS?
Anti-cytokine approaches: There is a lot of research on cytokines, proteins that the immune system uses to stimulate cells to grow. Researchers think that substances that can inhibit these (and similar) growth factors can also slow down the growth of KS. Monoclonal antibodies: These drugs are produced through genetic engineering. Their names end in "-mab," such as bevacizumab.
Other drugs: Scientists are studying several drugs that slow down the development of new blood vessels (angiogenesis).
The Bottom Line
KS is a disease that affects up to 20% of people with AIDS who are not taking ART. It is partly caused by a herpes virus called HHV-8. The best treatment for KS is strong antiretroviral therapy (ART). KS in the skin can be treated in several ways and is not a serious problem. KS in internal organs can be life threatening. Internal KS is usually treated with anti-cancer drugs.
If you notice new dark spots on your skin, have your health care provider look at them to see if you might have KS.
Henry J. Kaiser Family Foundation Medical News
Physicians in San Francisco Identify Kaposi's Sarcoma Cluster Among HIV-Positive MSM
October 15, 2007
Physicians from San Francisco General Hospital last month in a letter published in the New England Journal of Medicine said they had identified between November 2004 and January 2006 a cluster of nine cases of Kaposi's sarcoma among HIV-positive men who have sex with men, the San Francisco Chronicle reports.
Kaposi's sarcoma is a skin disease triggered by a herpes virus, called HHV-8, which causes purple lesions to develop. About 80% people living with HIV/AIDS in the U.S. developed the disease before the introduction of antiretroviral drugs in 1995, and many died when it spread to their lungs, lymph nodes and throat. Kaposi's sarcoma still is common in sub-Saharan Africa, where 75% of people who need antiretrovirals do not have access to them.
The total number of confirmed cases of Kaposi's sarcoma among HIV-positive MSM in San Francisco has increased to 15 since the letter was published last month, the Chronicle reports. The majority of people in treatment for the condition are in their 40s and 50s, have been HIV-positive for almost 20 years and have undetectable HIV viral loads. Unlike Kaposi's sarcoma cases prior to widespread use of antiretrovirals in the U.S., the new cases have not been aggressive, invasive or deadly; however, the lesions are "unsightly, difficult to treat and raise uncomfortable questions about what weaknesses" might occur in the immune systems of aging HIV-positive people, the Chronicle reports.
"The normal treatment for KS among HIV patients is to treat the virus and boost the immune system," Toby Maurer, chief of dermatology at SFGH, said, adding, "But in these patients, their immune system is already boosted." Maurer added that the "big question" is whether physicians will be able to control other viruses or infections in aging HIV-positive people if they are unable to control HHV-8. "That's why we are following this very closely," she said (Russell, San Francisco Chronicle, 10/12).
The NEJM letter is available online.