Welcome, Guest. Please login or register.
January 20, 2018, 10:09:08 AM

Login with username, password and session length

  • Total Members: 32184
  • Latest: timoup
  • Total Posts: 725315
  • Total Topics: 59122
  • Online Today: 311
  • Online Ever: 1421
  • (August 13, 2016, 05:18:44 AM)
Users Online
Users: 0
Guests: 271
Total: 271


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: KS Legions are returning after 12 years!  (Read 6032 times)

0 Members and 1 Guest are viewing this topic.

Offline Jeffreyj

  • Member
  • Posts: 1,403
KS Legions are returning after 12 years!
« on: July 20, 2009, 06:09:43 AM »
I had chemo to help me get rid of legions off my wrist, and in my small intestines, which was found by accident during a test while I was having a check up.

I have heard they can just go away by themselves. Is this true?
This new one has been on my inner thigh, for over a month. I also have a smaller one on my ankle. They both look exactly like the one in 1995.
My viral load is UnD, and t-cells over 500.

Any advice would be greatly appreciated.

Positive since 1985

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: KS Legions are returning after 12 years!
« Reply #1 on: July 20, 2009, 09:01:54 AM »
Hey Jeffrey, I don't know anything about KS myself but just wanted you to know that I'm thinking of you.

"Iíve slept with enough men to know that Iím not gay"

Offline veritas

  • Member
  • Posts: 1,410
Re: KS Legions are returning after 12 years!
« Reply #2 on: July 20, 2009, 02:23:55 PM »


This might help:


Evidently, HAART can play a role in controlling ks.

Hope this helps.

ps: magnify the image by clicking on the text.

Offline Luke

  • Member
  • Posts: 291
Re: KS Legions are returning after 12 years!
« Reply #3 on: July 20, 2009, 03:21:42 PM »
It is certainly true that antiretroviral therapy seems to be the most effective way to control Kaposi's Sarcoma; but it is also known that some people who have responded well to treatment can experience what they call 'indolent' (relatively benign) KS. It is quite rare, has only really been observed for the last four or five years and is still being studied. If indeed this is KS that you have, then with numbers as good as yours I would imagine that you have the indolent variety and that it is therefore highly unlikely to be serious. Still best to get it checked out though.

Indolent KS isn't like the epidemic, AIDS-defining, malignant KS that was so prevalent in the pre-HAART days. It is more like the classic, benign, KS that occurs commonly on the lower limbs of older men of Mediterranean and Eastern European origin.

If you only have a few lesions, and they aren't causing any discomfort, then you could indeed leave them to see if they clear up of their own accord. If you want to treat them, there are alternatives to cancer drugs. You could have them frozen off with liquid nitrogen, have them surgically removed (probably not your best option) or treat them with retinoic acid - but remember that all any of those treatments will do is remove the lesion itself and, because the viral infection (HHV-8) causing the KS is still there, the lesions could return.  

It will come as no surprise that the usual crackpot elements of our community (the same crackpot elements who told us that poppers caused AIDS) have leapt at the opportunity to blame the sudden appearance of indolent KS on the use of poppers. It is a viral infection and there isn't a single shred of evidence (credible or otherwise) to link it to poppers. It is almost certainly an age-related phenomenon and being noticed now because we are surviving long enough for it to be seen with sufficient regularity for it to appear on the researchers radar. Another one for the ageing with HIV category.
« Last Edit: July 21, 2009, 04:10:19 AM by Luke »

Offline Luke

  • Member
  • Posts: 291
Re: KS Legions are returning after 12 years!
« Reply #4 on: July 21, 2009, 03:23:46 AM »
I've just had a little root about on this one.

There are a couple of published papers:

New England Journal of Medicine - HIV-associated Kaposiís sarcoma with a high CD4 cell count and a low viral load. http://www.ncbi.nlm.nih.gov/pubmed/10836764

Journal of Acquired Immune Deficiency Syndromes - Development of Kaposiís sarcoma despite sustained suppression of HIV plasma viremia. http://www.ncbi.nlm.nih.gov/pubmed/10843538

This mention on POZ: Kaposiís Sarcoma Returns in San Francisco - http://www.poz.com/articles/karposi_hiv_sarcoma_1_13126.shtml

And this needlessly alarmist article from the San Francisco Chronicle: Unsettling re-emergence of 'gay cancer' - http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/10/12/MNEESOFRG.DTL&tsp=1

In the San Francisco cluster, where this indolent KS was first observed, all the patients are over 40, have CD4 counts above 300 and undetectable viral loads.  

Don't forget that there are other possible dermatological explanations and that it might not even be KS. One that would immediately spring to mind is Solar Purpura - which is completely harmless and looks remarkably like KS - but given the location, on the inside of your thigh, that may not be the top candidate.
« Last Edit: July 21, 2009, 05:53:20 AM by Luke »

Offline edfu

  • Member
  • Posts: 1,088
Re: KS Legions are returning after 12 years!
« Reply #5 on: July 21, 2009, 06:32:40 AM »
Jeffrey, if they are KS, it's not that uncommon.  KS can occur at any T-cell level, but usually HAART is sufficient to cause remission.  It's imperative, though, that you get biopsied, or at least see a dermatologist who is very familiar with KS.  There are a number of skin conditions that can resemble KS, even to those of us who have previously had it or who have seen it countless times.  I, too, thought my KS had returned, but I was mistaken.  See my story here, on the Long-Term Survivors thread:


Please keep us posted after you see a dermatologist.  Best wishes. 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: KS Legions are returning after 12 years!
« Reply #6 on: July 21, 2009, 07:24:42 AM »
Thanks everyone for your input. I have lots of research to do, and i wont panic to see my Dr sooner then my regular monthly appointment.
Luke- thanks for all of the links.

Miss Philicia, thanks for caring it means allot. Ill keep you posted
  Ann, if you reading, please move this to the "Living" section.
Thanks again everyone,
Jeff   you all have put my mind at ease.
Positive since 1985

Offline elf

  • Member
  • Posts: 634
Re: KS Legions are returning after 12 years!
« Reply #7 on: July 21, 2009, 06:00:49 PM »
KS is caused by a herpesvirus (HH8) and there are specific drugs like cidofovir that are efficient against this virus.
Antiangiogenic drug thalidomide is also very good for making lesions go away.

KS is a vascular tumor (and not a skin tumor), and made of lymphatic endothelium cells (and not of blood endothelium cells).

KS used to be seen in people with low numbers of T-CD4 cells, but nowadays it can appear even in people with high CD4 numbers, and even during acute infection.  :o
« Last Edit: July 21, 2009, 06:16:40 PM by elf »
Getting used to my breakfasts with a pill of Complera.


Terms of Membership for these forums

© 2017 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.