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InvisibleNoMore
Newbie

Reged: 12/19/11
Posts: 4
Kaposi Sarcoma---PLEASE HELP
      #268993 - 11/14/12 09:15 PM

Hello All,

Today I found out that the lesions that were covering my body for the past couple months are Kaposi Sarcoma. I was diagnosed HIV+ almost a year ago. Since diagnosis I have been on Complera and my viral load has been undetectable and my CD4 count is around 500-600 . At this point I fear I'm full blown AIDS and there is no hope. All I keep reading is "incurable cancer". Also is chemo beneficial at all being that the disease is incurable? Today has been the worst day of my life its like getting a death sentence. Any advice or insight would be appreciated. Thanks guys

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PjA
Newbie

Reged: 01/10/12
Posts: 1
Loc: Vienna, Austria
Re: Kaposi Sarcoma---PLEASE HELP new
      #269008 - 11/16/12 03:06 PM

Hi Invisible no more!

My experience with Kaposi Sarcoma started in 1994; I’d been HIV+ since 1983 and had few expectations in life. My first partner died back in 1988 and was covered in lesions. This was more than horrifying because it did seem that there was no hope. My first Kaposi Sarcoma was on my nose and was more than plain to see but I had it treated with Liquid Nitrogen which basically freezes it down to something like -180°. It doesn’t hurt but it can be irritating. Anyway after the treatment a blister appeared and the Kaposi was on the top of the blister. It dried and dropped off. Then I started getting lesions on my legs and chin which was very taxing to say the least. The ones on my chin were removed surgically. My Dr way back then also gave me access to what was then a trial drug 3TC (Epivir) and after a couple of months the Kaposi started to reduce in size and the colour went very pail and with time they totally disappeared. This was in combination with AZT (Retrovir) which, these days is hardly prescribed and certainly not in the dosage it used to be. It was one of the first combination therapies in Austria. I have not had any Kaposi Sarcoma since then. At that time I had no traceable CD4, and that for several years but now I am back up to almost 400. Thank goodness for combitherapies…
There is always some hope, please don’t give up there are ways of getting around this. One thing to consider; and it is something that I really believe in. I don’t say I am HIV, I say I’ve got HIV, also the same with Aids. I’m not Aids, I’ve got Aids. I don’t fight it I have learned to live with it. I just couldn’t fight anymore, it was using up far too much energy and the continual conflict was harassing.
So “Invisible no more”, I saw you… Take great care and if you want to drop me a line please don’t hesitate. My Email address; pja@chello.at You’re not alone!
Greetings, Philip


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jEm
Newbie

Reged: 11/20/12
Posts: 2
Loc: Michigan, USA
Re: Kaposi Sarcoma---PLEASE HELP new
      #269099 - 11/20/12 01:15 PM

hello Invis-NoMore - Sorry to read about your diagnosis. I too, was diagnosed with KS back in April '12 and I am still in the midst of treatment. I've been poz since 2001. I can't comment on if you have full blown AIDS, but your counts are decent, much better than mine. My count in April was 184 and I have been told that anything under 200 usually means full blown. I went back on meds and I am around that number still. (my counts kept dropping) I developed lesions in different places on my body, my left shin, left thigh, some on my shoulder blades, my waist and also in my mouth and nostrils. My oncologist started me right away on chemotherapy and it has greatly reduced all areas. The ones in my mouth and nostrils and on my shoulders have disappeared; the others have reduced in size and color, etc. You won't ever cure this cancer and the best you can work for is to put it in remission. After treament, you will need to keep checking yourself and/or your doctor to ensure no new lesions are appearing. You can live with this and you can beat it. Staying on your meds will be a huge help and keeping your health in check, as any illness will make a difference as well. Stay focused on your health plan, no one else, not even your doctor will do this entirely. You have to jump in and direct your path. I was great concerned, and I still am concerned for the future but there is hope and there are things to aid you in your fight.
Stay positive...ha, no pun intended there, but keeping bright instead of dark does make a difference.
If you'd like to chat sometime, reply to me, we can exchange email addresses and talk.
be well....
jEm

Edited by jEm (11/20/12 01:16 PM)

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InvisibleNoMore
Newbie

Reged: 12/19/11
Posts: 4
Re: Kaposi Sarcoma---PLEASE HELP new
      #269110 - 11/20/12 07:55 PM

Thanks jEm for the kind words, what is your email? I have soo many questions about Kaposi and your experiences?

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jEm
Newbie

Reged: 11/20/12
Posts: 2
Loc: Michigan, USA
Re: Kaposi Sarcoma---PLEASE HELP new
      #269154 - 11/22/12 01:49 PM

You're welcome!! sent you a private note on here.
Talk soon.

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Bryant40
Newbie

Reged: 05/26/14
Posts: 1
Re: Kaposi Sarcoma---PLEASE HELP new
      #276321 - 05/26/14 11:56 PM

Hey there - scared about something- but I have a few questions related to this topic - and let me know if you are willing to talk to me first. Thank you much!!!! I am Bryant.



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