|KS Treatment 2010
Sep 26, 2010
Dear Dr. Bob,
First off I know this isn't the correct forum for this issue but I haven't seen/ noticed any active which would be applicable so if you could help or point me in the right direction it would be most appreciated!
I was diagnosed with HIV June 2009 (cd4 98) and had developed KS on my right leg. A GP initially put this down as just vascular and nothing to worry about. Apart from the KS I luckily haven't been ill and since being on Atripla for a yr my cd4 are now 323 vl undetectable (Aug 2010) but the lesions which vary from a bruise-like appearance to a couple small raised red marks haven't begun to fade. My clinic seem to be happy taking a wait and see approach but to be honest the KS bothers me (I won't go away with or visit friends because I don't want to explain the marks, and people have asked 'what's that?', no wearing shorts in the hot weather or around the house, and the thought of being physically intimate or having a relationship is just non runner).
On the plus side I haven't developed any new lesions in months (last one about 6mths ago and was very faint and isn't particularly noticeable) they are mainly on my right leg (5) with a couple on my back and 1 on my left arm
I was infected during a relationship with a partner who was supposedly negative and I've handled things pretty well all things considered but I guess while these marks are so visually prominent it feels like I can't get on with living my life. Any advice or pointers on some more up to date options in dealing with KS would be appreciated since much of the info available online seems to be quite old since its prevalence has declined.
Thanks in advance for your help and apologies for going off topic!
Response from Dr. Frascino
Certainly no apology needed! I would recommend you consult an HIV-knowledgeable oncologist. Certainly it's possible the lesions will melt away if you have additional immune reconstitution (rise in CD4 count). However, you could also consider localized treatment of specific lesions or have some cosmetically removed. There are a host of options. I'll reprint below some information about KS and its current treatments.
Kaposi's first appearance Mar 26, 2010
Doctor Frascino ,
I want to express to you the admiration for all the great information this site provides plus your humorous , friendly answers to even the most stupid questions from many of us , internet users ...and well , im afraid here is another one . Can a kaposi sarkoma appear within 2 months of a possible first infection with the virus ? i never had unsafe sex , still i guess im a bit too afraid of possibilities and wanted to ask you that
Response from Dr. Frascino
Thanks for your kind comments.
Regarding Kaposi's sarcoma, it can present at any stage of HIV disease, although it's much more common in late-stage disease after the immune system has been decimated by the virus. I'll repost below some information about Kaposi's sarcoma from the archives.
Now I have a question for you. If you've never had unsafe sex, why are you worrying about HIV? You have a greater chance of being zapped to death by lightening or squished by an errant meteor.
Don't be afraid of HIV. Just get informed and continue to practice safer sex techniques and you'll be fine, OK?
Be well. Stay well.
Kaposi's Sarcoma (KS) November 18, 2009
What Is KS? How Is KS Treated? Can KS Be Prevented? What Else Is Being Studied for KS? The Bottom Line
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 is a sign of AIDS. 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). However, in 2007, scientists reported finding new cases of KS in people whose HIV is under control. These new cases seem to be mild and not life-threatening.
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.
When to get tested and if.
One more test needed?
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