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Author Topic: Dianosed with KS  (Read 1071 times)

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Offline Almost2late

  • Member
  • Posts: 233
  • "My disease stops with me" - Jeff G
Dianosed with KS
« on: March 17, 2014, 04:11:05 PM »
Hi Everyone,

Got a call from the dermatologist today that my biopsy came back positive for KS.
I've tried to get in touch with my ID dr. so he can give an idea of what to do now but he has'nt returned my call yet. I'm trying not to panic but its hard to control myself. The dermatologist said something about chemo. Still waiting on new results of CD4/VL test taken on 3/12 but nothing yet. Does anyone know what I should expect from this KS with such low CD4 numbers.

Frank
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”
― Dr. Seuss

“Everybody dies … The thing is, to have a life before we die.”
― John Irving, The World According to Garp

Offline bmancanfly

  • Member
  • Posts: 580
  • Medicare For All !
Re: Dianosed with KS
« Reply #1 on: March 17, 2014, 04:31:13 PM »
First off,  don't panic.

How long have you been on meds?

Every situation is going to be different depending on your individual case.

When I had KS on my skin they did an internal body scan and found no internal KS so I only had cutaneous lesions.  They resolved eventually after being on meds for awhile.  It was so long ago that I can't remember how long it took,  but it wasn't very long - a few months maybe.

On successful HAART they usually resolve on their own

Your doc will advise you what your best next step is,  but there really is no need to panic.

BTW,  for me they left no scars.

 
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline eric48

  • Member
  • Posts: 1,175
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Dianosed with KS
« Reply #2 on: March 17, 2014, 04:31:18 PM »
Unless something goes wrong from this point on, the meds are already suppressing the (HIV) virus. VL going down is a tail-off effect

So that is already a good point that you are scoring.

Hope this helps

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline eric48

  • Member
  • Posts: 1,175
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Dianosed with KS
« Reply #3 on: March 17, 2014, 04:33:09 PM »
How long have you been on meds?

Apparently early Feb this year, from signature...

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline Almost2late

  • Member
  • Posts: 233
  • "My disease stops with me" - Jeff G
Re: Dianosed with KS
« Reply #4 on: March 17, 2014, 04:52:11 PM »
Thanks guys, started Atripla feb. 2, 2014 and never miss a night... The KS marks look like lines and I haven't noticed any more.. most r around my neck 4 and 1 under each armpit .. they biopsied the 1 under my left armpit about the size of a corn.. but thank you so much
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”
― Dr. Seuss

“Everybody dies … The thing is, to have a life before we die.”
― John Irving, The World According to Garp

Offline Almost2late

  • Member
  • Posts: 233
  • "My disease stops with me" - Jeff G
Re: Dianosed with KS
« Reply #5 on: March 17, 2014, 04:56:18 PM »
no, started Feb 01.. sorry
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”
― Dr. Seuss

“Everybody dies … The thing is, to have a life before we die.”
― John Irving, The World According to Garp

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,722
  • How am I doing Beren ?
Re: Dianosed with KS
« Reply #6 on: March 17, 2014, 06:56:54 PM »
Hi Almost . I have KS that resolved after successful ART therapy . It can take awhile to notice a difference but it should clear up in time . I had some deep lesions and one quite large on my legs so I did chemo and radiation treatments but ART took care of the small ones in time . I have been cancer free for about 7 years now .

 

Offline harleymc

  • Member
  • Posts: 210
Re: Dianosed with KS
« Reply #7 on: March 20, 2014, 03:54:39 AM »
Hi
I was in a similar scenario to you a few years ago with cd4s at 10 and lots of KS.
All my KS was external so the only treatment I had was ART, the resolution of the KS started within 6 weeks and by 3 months the changes were very dramatic.

Your doctor may want t do something different for internal KS, but there is a broad body of medical opinion that the key to beating KS is hitting HIV with ART medications.

Good Luck

Offline randym431

  • Member
  • Posts: 1,125
Re: Dianosed with KS
« Reply #8 on: March 21, 2014, 08:46:20 AM »
Im guessing when your cd4 reaches around 200 your KS will stop in its tracks and those red/purple spots will turn into light brown harmless spots similar to sun spots or age spots.
The meds will be the best most effective treatment.
Personally, and Im not a doctor, I would bypass any further treatment unless the KS becomes life threatening.
Your immune system should recover enough to take care of that KS in due time.
I found the magic number for eliminating KS is around 200 CD4.
But even with your recovering immune system, going by your numbers, you may see much improvement far before reaching that 200 cd4 count.
You numbers are actually quite good.
That VL is taking a real nose dive, and your immune system is reflecting exactly that.
Possibly cd4 of 100, you could start to see dramatic results.
First, with no new spots forming, and then with the current spots turning into a light brown harmless age spots.
I'd bet in 2 - 3 more months your cd4 will easily be around 200.
Just keep on the meds and do not miss any dosages.
My cd4 was 85 and VL 1-million back in 2005.
Today, undetectable for years and my cd4 has been long term stable at 970.
And I've never had any issues, especially again with KS, since 2005.
Just my 2 cents worth. Take care.
« Last Edit: March 21, 2014, 08:49:05 AM by randym431 »

Offline Almost2late

  • Member
  • Posts: 233
  • "My disease stops with me" - Jeff G
Re: Dianosed with KS
« Reply #9 on: March 21, 2014, 02:40:01 PM »
Thanks, Randy, Harley.. Love when folks here give me they're advise/experience cause back in January I was totally lost on HIV issues.. I'm slowly learning a hell-of-alot lately especially on this forum.. I can tell that so far what I see in my KS is that it's not aggressive (so far).. I count 8 lesions on my body and most are small but they are different from what i've seen on the internet. They're linear in shape like a cut or scar.. They do protrude so you can feel them with your finger tips but not all of them and the only way I know its KS is cause of the biopsy otherwise I wouldn't have thought much of it..Well, thats not true, everything that happens to me now I take very seriously since my diagnoses. I've become a bit paranoid. Does anyone know about this type of KS? Is it rare? I mean it being like a line in shape cause I don't see any like this on the internet.. Once again, Thank you to all the wonderful people on this forum, don't know what i'd do without YALL  :) Peace


Frank
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235  switched off Atripla
08/14     135    10%      110  stopped Azithromycin
Tivicay, Truvada, Bactrim

“I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!”
― Dr. Seuss

“Everybody dies … The thing is, to have a life before we die.”
― John Irving, The World According to Garp

 


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