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Author Topic: Kaposi's Sarcoma AIDS-related cancer  (Read 3551 times)

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Offline paulie_tx

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Kaposi's Sarcoma AIDS-related cancer
« on: May 06, 2012, 01:02:29 PM »


Anyone currently dealing with ks?  I've got some lesions on my mace and neck, a couple on my lower body.

I just started meds last month, and Im freaking out.

Anyone out there dealing or have dealt with this AIDS-related cancer???

Online Jeff G

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #1 on: May 06, 2012, 01:11:07 PM »
Hi Paulie .. I had KS on my legs . After I started Atripla and my CD4 count went up and my viral load down the KS began to fade and eventually went into remission .

I am sorry you are dealing with this , KS can be a traumatic experience but I assure you with proper treatment you can get better .   

Offline Buckmark

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #2 on: May 06, 2012, 02:29:00 PM »


Anyone currently dealing with ks?  I've got some lesions on my mace and neck, a couple on my lower body.

I just started meds last month, and Im freaking out.

Anyone out there dealing or have dealt with this AIDS-related cancer???


Hi Paulie,

What are the numbers from your latest tests for CD4 counts and viral load?  I suspect they must be pretty low for you to have developed KS.  And I see from previous posts that it was your KS that finally prompted you to start taking meds.  Once you have your virus under control, the KS should be easily treatable.

Regards,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline miked

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #3 on: May 21, 2012, 01:03:13 PM »
I was diagnosed with KS in 2007.  Fortuneately (??), it has been mainly been on my lower legs and feet, with minor spots on hands and legs. I have been + since 1985 and started treatment in 1987.  No matter what I do, for the last 15 years I have not been able to get my T Cells up over the mids 200's and they will occasionally drop below 200.  My viral load has been barely detectable or not detectable for during this time (not detectable for the last 6 years).  I am currently taking Truvada, Norvis, Isentress, Prezista, and Selzentry.

In early 2008 I did a study at NIH on the use of Bevacizumab but saw no results other than a slower progression.  I started Doxil in late 2008 and immediately saw good results.  Side effects from Doxil were minimal. About 8 months after I completed the series of Doxil, it started coming back and I did another series of Doxil in late 2009.  Again about 8 months after completion of doxil, it started coming back and again did Doxil the end of 2010.    At this point I had reached the lifetime cap on Doxil.  The beginning of 2012 I started a clinical trial of Lenalidomide.  I saw some initial  results that looked good, but after the second cycle we had to lower the dose because of the effects on my white cells.  At this point, I saw minimal improvement, but at least no progression.  Other than drops in white cells, side effects have been minimal also. Because I am not showing the results they want, I will probably be dropped from the study as a "non progessor".  There are other options.  NIH is doing a study on Pomalidomide which is related to Lenalidomide. Etoposide is another option.

You should take KS very seriously, but for the vast majority of people, HAART is all that is needed.
.

Offline sshortguy1

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #4 on: May 21, 2012, 10:13:34 PM »
i've been reading alot about hiv but this is the 1st i ever heard from here ,
Kaposi's sarcoma is a type of cancer thats not curable not to scare any1 but fortunately i know alot of r.ns and dr.s that when i was diognosed my cd4 level was in the aids catagory below 200 and my friend wanted me tested when i took him to his caseworker i thought i would be neg, but unforetunately not my cd4 was 150s my friend's was in the single digets
Before the AIDS epidemic, Kaposi's sarcoma was seen mainly in elderly Italian and Jewish men, and rarely, in elderly women. Among this group, the tumors developed slowly. In AIDS patients, the cancer can develop quickly. The cancer may also involve the skin, lungs, gastrointestinal tract, and other organs.
In people with AIDS, Kaposi's sarcoma is caused by an interaction between HIV, a weakened immune system, and the human herpesvirus-8 (HHV-8). Kaposi's sarcoma has been linked to the spread of HIV and HHV-8 through sexual activity.
People who have kidney or other organ transplants are also at risk for Kaposi's sarcoma.
African Kaposi's sarcoma is fairly common in young adult males living near the equator. One form is also common in young African children.




 

Offline sshortguy1

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #5 on: May 21, 2012, 10:39:07 PM »
just thinking about it wish the best 4 all of u , Pneumonia is the most common in hiv patients for which i had the flu and the Pneumonia shots and been on bactrim to be honest if it was the end 4 me i rather have Pneumonia but gotten on atripla been on it 4 awhile like from what i've learned ask questions if u don't understand and read . it's all i done since nov of last yr i've known about this hiv thing more than i ever did before nov of last yr know about hiv read hiv positive and poz magazines and read thier stories what they went through , a stupid question is the 1 that was never asked

Offline Solo_LTSurvivor

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #6 on: May 22, 2012, 12:01:32 AM »
i've been reading alot about hiv but this is the 1st i ever heard from here ,
Kaposi's sarcoma is a type of cancer thats not curable not to scare any1 but fortunately i know alot of r.ns and dr.s that when i was diognosed my cd4 level was in the aids catagory below 200 and my friend wanted me tested when i took him to his caseworker i thought i would be neg, but unforetunately not my cd4 was 150s my friend's was in the single digets
Before the AIDS epidemic, Kaposi's sarcoma was seen mainly in elderly Italian and Jewish men, and rarely, in elderly women. Among this group, the tumors developed slowly. In AIDS patients, the cancer can develop quickly. The cancer may also involve the skin, lungs, gastrointestinal tract, and other organs.
In people with AIDS, Kaposi's sarcoma is caused by an interaction between HIV, a weakened immune system, and the human herpesvirus-8 (HHV-8). Kaposi's sarcoma has been linked to the spread of HIV and HHV-8 through sexual activity.

People who have kidney or other organ transplants are also at risk for Kaposi's sarcoma.
African Kaposi's sarcoma is fairly common in young adult males living near the equator. One form is also common in young African children.

Seriously? You're going to try to discount the words (and experience) of a person who has lived with hiv long-term with something you've obviously copied from wikipedia or some other online source?

You've really got balls.

Hi Paulie .. I had KS on my legs . After I started Atripla and my CD4 count went up and my viral load down the KS began to fade and eventually went into remission .

I am sorry you are dealing with this , KS can be a traumatic experience but I assure you with proper treatment you can get better .   
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

Online Jeff G

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #7 on: May 22, 2012, 12:08:37 AM »
Sshortguy ... Im sure you mean well but I must agree with Solo , your copy and paste HIV tutorials are tedious . 

Offline randym431

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #8 on: May 22, 2012, 06:29:24 AM »
I had one spot that looked like a blood blister. My cd4 was 83 at the time. I started meds. The doctor said the KS should fade away, he wasn't concerned. He said starting meds was the best treatment for aids related KS. Within a few months, 3 - 6 months after starting meds, the blue blood blister looking spot abut the size of a dime, turned brown like an age spot. The spot went from being a raised spot to a flat brown skin spot. At that point I quit worrying about it. Some time later, one day I noticed the brown age looking spot had went away.
So now that you are on meds, things should improve quickly. Once your cd4 reaches 200, that seems to be the magic number where KS dies off. Spots turn brown. Spots fade away.
The only person I ever knew where KS was a big problem was my cousin that got aids before treatment was available back in the 1980's. He got KS spots in his mouth and throat making it sore to swallow. He was in the last stages at that point and passed a few months later from an infection that attacked his heart where they had put in a tube for his IV's.

Offline brenner

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #9 on: May 22, 2012, 07:33:29 AM »
Hi, im glad that there is discussion about ks.  I too have a lesion on my thigh.  Started off the size of a nickel, raised and blue black.  Now, 9 months on haart, the lesion hasflattened out and is fading from the centre out.  My doctor is not too concerned about it, but it bothers me each day.  Its kind of like my 'mark'.  I think its not going to fade anymore. Anyone else dealing with this?  Pleaselet me know so we can compare scars.  Bet mine is bigger.
Feb 23. 2011  poz diagnosed
Feb 28.  cd4 257, vl 262400, %21
Mar 14.  start Atripla
May 18.  cd4 639, vl 690, %33
Aug 19.  cd4 583, vl 60, %38
Nov 18.  cd4 450, vl UD, %38
2012
Feb.19   cd4 649, vl UD, %35
Jun 08.  cd4 524, vl UD, %34
Sep 16.  cd4 567, vl UD, %35
Dec 02.  cd4 592, vl UD, %35
2013
Mar 10.  cd4 688, vl UD, %35

Offline sshortguy1

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  • Posts: 118
Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #10 on: May 22, 2012, 09:20:17 AM »
i done was read about it but you want to bash me about it you go right ahead and state this knowledge is power i read about the crap and talked to some that done work and tests at washington university here in st louis , if any1 ever read as they say do their "homework" you would know

Offline sshortguy1

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #11 on: May 22, 2012, 10:18:51 AM »
as done reading on here and like buckmark said the guy's cd levels must have gone real low to develop to be honest if people rather ask thier drs instead of asking people on here i asked my dr whats the ratings of survival with the cd4 so low ? he said he had someone in here with a cd level of 10, 10 is hardly a immune system at all u think the drs don't know much about hiv? i tell u what i know of a guy that had hiv since 1985 been through battles with it took the medication they prescribed him and told me when i got it that its not as bad as they say its all about taking care of yourself the drs i do know done alot of work and know how hiv progresses etc . unfortunately like in some countries out no so good when it comes to it , but in the united states especially in st louis i got a dr thats been dealing with hiv and done the studies etc he's been dealing with hiv patients since the middle 80s as i heard about super strains and some call it mega strains they are out there i few of my friends had it and been dealing with it to me instead of asking questions on here and getting multiple opinions on the subject ask your dr. i was talking to 1 of his aids that took my blood for testing about the super strains as u call it hiv cells makes exact copies of itself , as a normal immune system when it haapens it throws it out hiv isn't that smart it lets it go mutates into more diffrent cells where atripla complera etc doesn't help patients have to go taking as the drs call it a cocktail prescription which infact i have a friend that has the super strain where resistants concern as to karposi sarcoma is concern is a cancer similliar to skin cancer like any cancer it can spread skin cancers develops spots on the skin as well as karposi sarcoma
« Last Edit: May 22, 2012, 10:21:57 AM by sshortguy1 »

Offline Joe K

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #12 on: May 22, 2012, 11:54:39 AM »
i done was read about it but you want to bash me about it you go right ahead and state this knowledge is power i read about the crap and talked to some that done work and tests at washington university here in st louis , if any1 ever read as they say do their "homework" you would know

as done reading on here and like buckmark said the guy's cd levels must have gone real low to develop to be honest if people rather ask thier drs instead of asking people on here i asked my dr whats the ratings of survival with the cd4 so low ? he said he had someone in here with a cd level of 10, 10 is hardly a immune system at all u think the drs don't know much about hiv? i tell u what i know of a guy that had hiv since 1985 been through battles with it took the medication they prescribed him and told me when i got it that its not as bad as they say its all about taking care of yourself the drs i do know done alot of work and know how hiv progresses etc . unfortunately like in some countries out no so good when it comes to it , but in the united states especially in st louis i got a dr thats been dealing with hiv and done the studies etc he's been dealing with hiv patients since the middle 80s as i heard about super strains and some call it mega strains they are out there i few of my friends had it and been dealing with it to me instead of asking questions on here and getting multiple opinions on the subject ask your dr. i was talking to 1 of his aids that took my blood for testing about the super strains as u call it hiv cells makes exact copies of itself , as a normal immune system when it haapens it throws it out hiv isn't that smart it lets it go mutates into more diffrent cells where atripla complera etc doesn't help patients have to go taking as the drs call it a cocktail prescription which infact i have a friend that has the super strain where resistants concern as to karposi sarcoma is concern is a cancer similliar to skin cancer like any cancer it can spread skin cancers develops spots on the skin as well as karposi sarcoma

It's very hard to read your posts, especially since you don't use any capitalization, punctuation, sentence or paragraph structure.  If you wish to share your thoughts, I suggest you make your posts readable.  I also suggest you write about things, you actually know something about.  After reading your second post, it's apparent  that you are parroting what others have told you and that contributes nothing to the forum.

Joe

Offline sshortguy1

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #13 on: May 22, 2012, 05:07:17 PM »
It's very hard to read your posts, especially since you don't use any capitalization, punctuation, sentence or paragraph structure.  If you wish to share your thoughts, I suggest you make your posts readable.  I also suggest you write about things, you actually know something about.  After reading your second post, it's apparent  that you are parroting what others have told you and that contributes nothing to the forum.

Joe
its called reading ask your dr instead of asking on here getting multiple opinions

Offline Matty the Damned

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #14 on: May 22, 2012, 05:10:28 PM »
its called reading ask your dr instead of asking on here getting multiple opinions

Short,

It's very hard to understand what you're trying to say. It's not necessarily what you're saying, it's how you're saying it.

MtD

Offline NY2011

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #15 on: May 22, 2012, 08:19:19 PM »
English may not be his first language, yet he still has a right to convey his opinion in a forum....and even if English is his first language, it's not our place to criticize his grammar.  With some patience, it's not that difficult to figure out his postings.  This may be the only outlet this guy has for dealing with a potentially life-threatening disease, or it may be the one that is most comfortable for him to be a part of...to be among people who have this in common with him. I'd be happier if we ignored the criticism and focused on being helpful. 
« Last Edit: May 22, 2012, 08:25:40 PM by NY2011 »
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud

Offline Matty the Damned

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #16 on: May 22, 2012, 08:31:36 PM »
English may not be his first language, yet he still has a right to convey his opinion in a forum....and even if English is his first language, it's not our place to criticize his grammar.  With some patience, it's not that difficult to figure out his postings.  This may be the only outlet this guy has for dealing with a potentially life-threatening disease, or it may be the one that is most comfortable for him to be a part of...to be among people who have this in common with him. I'd be happier if we ignored the criticism and focused on being helpful.

Of course he has a right to express his opinions but if no-one can understand what the fuck he's saying there's going to be a problem. There are limits to the medium in an internet forum.

Running my eye over his posts I think English is his first language but he was some problems with the written word.

And believe me, as someone who responds to people in AMI where English is often a second language, I can tell you Short is very hard to understand.

MtD

Offline NY2011

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #17 on: May 23, 2012, 12:01:26 AM »
i dunno, it's getting all too common to find these conversations going off into the abyss because of a few criticisms that have nothing to do with the topic of conversation. It's almost like watching an episode of the daytime talk show "The View".

 Back to the topic: Concerns about KS
« Last Edit: May 23, 2012, 12:03:45 AM by NY2011 »
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud

Offline jkinatl2

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #18 on: May 23, 2012, 12:53:19 AM »
i dunno, it's getting all too common to find these conversations going off into the abyss because of a few criticisms that have nothing to do with the topic of conversation. It's almost like watching an episode of the daytime talk show "The View".

 Back to the topic: Concerns about KS

So let's start with you. Add, please, to the conversation instead of simply commenting on it.

I have had no first hand experience with KS, therefore I have no dog in this hunt. I suspect, however, that others with actual info and experience can and will contribute. Not copy and paste contribution, but actual real life stuff.

That is, after all, what this forum is for.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Online Miss Philicia

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #19 on: May 23, 2012, 08:12:13 AM »
English may not be his first language

He's from St. Louis. And criticizing his grammar... well, I would agree with you if it was just minor items (certainly I make grammar and spelling mistakes), but all of his posts are written in a manner that is practically illegible, rendering his opinions/statements for most readers consistently incoherent. Further, by many of us pointing this out to this new poster it is to his advantage, as the longer he insists on writing like he has been doing the less likely it is for other members to bother reading his posts and offering him the support he assumably needs.

Additionally, I initially pondered if he was using a smartphone or somesuch to to make his entries and was just having difficulty utilizing the small keys with perhaps large fingers. But regardless, as others have astutely pointed out, ultimately his entries are mostly impossible to read.
"Iíve slept with enough men to know that Iím not gay"

Online Jeff G

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #20 on: May 23, 2012, 09:00:39 AM »
Back to the topic: Concerns about KS

The criticism is an attempt to get back on topic . sshort has a habit of coming into a thread with copy and paste info he gets off the net , and in this instance said why not go read elsewhere instead of getting multiple opinions in this forum . His insistence of discounting what was offered in good faith and contradicting the real life stories and advice of some who have lived with HIV for decades while suggesting he knows better because he reads wikipedia is good enough reason for criticism . If he is willing to listen he may learn something and get support if he needs it .

Offline brenner

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #21 on: May 23, 2012, 10:54:24 PM »
Ummmm....speaking of ks.....
Claws in ladies and gentlemen.   ::)
Feb 23. 2011  poz diagnosed
Feb 28.  cd4 257, vl 262400, %21
Mar 14.  start Atripla
May 18.  cd4 639, vl 690, %33
Aug 19.  cd4 583, vl 60, %38
Nov 18.  cd4 450, vl UD, %38
2012
Feb.19   cd4 649, vl UD, %35
Jun 08.  cd4 524, vl UD, %34
Sep 16.  cd4 567, vl UD, %35
Dec 02.  cd4 592, vl UD, %35
2013
Mar 10.  cd4 688, vl UD, %35

Offline Matty the Damned

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #22 on: May 23, 2012, 11:47:05 PM »
Ummmm....speaking of ks.....
Claws in ladies and gentlemen.   ::)

::) yourself.

MtD

Offline HnyMustard

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Re: Kaposi's Sarcoma AIDS-related cancer
« Reply #23 on: May 24, 2012, 09:48:02 AM »
I had a KS lesion on my arm last October, and after starting Atripla it faded away nearly completely. There is still a faint trace there, but no one can see it but myself.

I hope the same happens for your KS.  :)

 


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