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Jerrybythesea
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Kaposi Sarcoma
#77999 - 11/10/03 01:38 AM
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I have KS and was diagnosed in August 2001, and shortly thereafter was tested for HIV and was positive. My t-cells are in the 600s and I have been undetectable since Sept. 2001. My KS are on my right ankle. About every 9 months I get a new, but small lesion in the same right ankle area.
Are there people out there with KS? I am interested in your experience. In particular, has your HAART meds stopped the progression of KS, and if so, what is the medication you are taking? My meds obviously haven't stopped the progression of my KS, although it is confined to one area on the right ankle and hasn't progressed a lot for 2 years now. (However, I am worried about a suspicious small, slightly raised area on my right knee and will be going to the doctor soon to see what that is all about and if it is a KS lesion)
I live in the L.A. area and am male. Thanks for your time and consideration.
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Cases of AIDS-related KS have decreased by 90% in HIV-positive gay men since the availability of combination antiretroviral therapy in 1996.
Are you seeing an oncologist who specializes in HIV??? Are you getting good treatment for the KS?
http://www.thebody.com/cria/spring03/cancers.html#ks
http://www.thebody.com/nmai/ks.html
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Thanks for your kind and quick response.
I have an HMO: Kaiser. I see an oncologist there, but she is not a specialist in HIV. I have a specialist in HIV at Kaiser. However, I have consulted with an HIV specialist who concentrates on KS. He is associated with UCLA. I will be seeing him next MOnday.
ONe of the questions I will ask is if I should change HAART meds (I take Cabovir and Veramune, with good results) that would be more effective against the KS. I believe there is, but I would have to go to a protease inhibitor. My current HAART meds have a good record re: HIV staying undetectable and I would hate to have to give up that advantage. I would rather stay on my present meds until the HIV starts to mutate, and then switch to another which may have to be a PI. It depends if this little something on my knee is KS (I am not sure if it is, it could be just a skin disoloration or a nodule of some kind, but it is only slightly dark and slightly raised) which will mean the KS is no longer confined to the outer part of my right ankle and is spreading. IN which case, I don't think I have a choice.
It seems I will have to get some HAART that better deals with KS. Unless I want to go to chemo to deal with the KS directly. I'll have a better idea of all this after I see this UCLA doctor on Monday.
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What a lovely guy you seem to be. I wish you all the luck. I asked your question to the doctors. I thought no one got KS anymore! Take a look at http://www.thebody.com/Forums/AIDS/SideEffects/ under the headline: Still have KS on HAART it takes a day or two for them to answer.
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scott26ky
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Newbie
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Reged: 11/13/03
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Posts: 6
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Loc: KY
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I have never heard of KS. I am new to alotta stuff though. I recently went to the doctor because I was getting what i call boils on my backside and hip, but they have cleared up with an antibiotic she gave me. however thursday she called me in and told me that i had tested poz. could these boils be something else?
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Jerrybythesea
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If they cleared up, they are NOT Kaposi's Sarcoma which is a cancer. It appears on the skin as reddish-purple in color. Before antiviral meds, there was a lot of KS. But now, with the antivirals there are much fewer cases. And if the KS spreads to other portions of the body, there is chemo therapy that clears it up or puts it into remission. Mine is pretty much in a small area on my ankle, and my doctor told me Friday the thing on my knee that I was worried about is not KS. I am hoping my KS will just stay in my ankle area. Acutally most of it is gone with some radiation I had earlier this year.
If you have any questions or any worries, I will be glad to discuss them with you. I know it is a big trauma when one first receives the HIV positive news. Have a good Thanksgiving.
You can email me at gerashlaw@aol.com
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I have been HIV Positive since 1985. In 1992 I had the first of about 5 KS lesions.
They were on my belly, eyelid and other sundry areas of the body. I had them treated with Velban(sp?) injections and that was the end of them. I dont know about the heart medications but i have been on a couple of antiretrovirals over the years. Currently I have been on a drug vacation for 6 yrs.
What year is this? oh, 2003. I am in excellent health and have ridden my bike in two AIDS Rides from San Francisco to Los Angeles. I dont know why but I dont care why I have been chosen to survive. CHeers!
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JerrybytheSea
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That is so great to hear about how your KS cleared up and never came back, with Velban. That was in 92, and they now have a lot of drugs for KS, so says my doc. Since I wrote up my concerns re:KS on the body, my doc has reassured me. I have 3 lesions, two on the right ankle and one on my right knee. The doc wants to wait to see if I really need some drug therapy for the KS. I see him again in Feb. He is on the cutting edge, doing reseach on anti-KS drugs for about 15 years.
You are on a 6 year vacation from anti-virals? That is amazing, especially since you are obviously doing so well with the bike ride to LA. Could you tell me more about the drug vacation. Perhaps, your HIV is a weak type. Do you know? How does the doc explain why you, essentially, no longer need antivirals?
If you prefer you can send me your reply directly to my email: gerashlaw@aol.com THANKS! Jerry
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