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Author Topic: Just found out I have KS  (Read 4715 times)

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Offline bmancanfly

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Just found out I have KS
« on: September 02, 2010, 04:53:54 PM »
Just got back from the dermotologist and to my surprise the strange bump on my chin that they removed last week came back as KS.

Really surprised, and a little worried.  My last CD4 count was in the 400's and my VL has been undetectable for 2 1/2 years  (Viramune/Truvada).

They said I need to go see an oncologist asap.

Don't know what to make of this.  Should I be worried?  Anyone else had KS while on haart?

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

 Bertrand Russell

Offline Matty the Damned

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Re: Just found out I have KS
« Reply #1 on: September 02, 2010, 05:14:06 PM »
KS is one of those OIs that can occur in folks with realtively high CD4 counts. It's not exclusive to HIV positive people, eg older men of eastern european and jewish heritage can get it too.

As I understand it KS in people with higher CD4 counts is less likely to be a major problem than in those with low counts. That said, consulting an onocologist is a very wise idea. KS can be nasty if the lesions start forming on internal organs such as your liver.

MtD

Offline veritas

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Re: Just found out I have KS
« Reply #2 on: September 02, 2010, 05:42:05 PM »

bman,

Matty gave some good advice. Consult an oncologist. Here is a link for the National Cancer Insitute dealing with KS:

http://www.cancer.gov/cancertopics/pdq/treatment/kaposis/Patient

It is treatable.

v

Offline Jeff G

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Re: Just found out I have KS
« Reply #3 on: September 02, 2010, 05:53:11 PM »
Matty's advice was spot on .

I have had a history of KS myself with a CD4 count above 400 . In my case it was on my legs , once they were removed and treated I have been cancer free for years now . My doctors did some scans to make sure I didn't have any internal problems just like Matty suggested .

I know its allot to ask but try not to worry youself to much over this , KS is a very treatable condition .

Offline bmancanfly

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Re: Just found out I have KS
« Reply #4 on: September 02, 2010, 06:54:18 PM »
Thanks for the replies guys.

jg1962,  when you say "scans" what exactly are you referring to. 

Trying not to worry, but it's part of my nature, unfortunately.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline Matty the Damned

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Re: Just found out I have KS
« Reply #5 on: September 02, 2010, 06:58:59 PM »
Thanks for the replies guys.

jg1962,  when you say "scans" what exactly are you referring to. 

Trying not to worry, but it's part of my nature, unfortunately.

CAT scans (possibly MRI) which are used to examine yer gizzards for bad stuff.

But don't fret too much babe. I would imagine they've found one rogue lesion and that should be the end of it. But make sure you see that oncologist. Just to be sure.

As JG says, KS is eminently treatable.

MtD

Offline bmancanfly

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Re: Just found out I have KS
« Reply #6 on: September 02, 2010, 07:04:12 PM »
thanks Matty. 
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline Tim Horn

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Re: Just found out I have KS
« Reply #7 on: September 02, 2010, 07:19:55 PM »
bman:

Sorry to hear about the KS diagnosis. Feel free to review AIDSmeds.com's comprehensive KS lesson and, of course, let us know if you have any specific questions.

Hang in there,

Tim

Offline Jeff G

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Re: Just found out I have KS
« Reply #8 on: September 02, 2010, 07:43:54 PM »
Thanks for the replies guys.

jg1962,  when you say "scans" what exactly are you referring to.  

Trying not to worry, but it's part of my nature, unfortunately.

I had a couple of MRI's over the years . I'm sure you have heard of those , I assure you they are completely painless .

Please forgive my choice of words by telling you not to worry . Hearing the word cancer and don't worry about it don't go well together .

A better way of reassuring you may have been to tell you one of the first things my oncologist told me to put me at ease was if he had a cancer diagnoses KS is the one he would choose if he had a list to choose from .  

I can see you are getting some excellent advice here but if you ever have anything to ask of me you know where the PM button is . Jeff .    

Offline bmancanfly

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Re: Just found out I have KS
« Reply #9 on: September 02, 2010, 08:12:25 PM »
Thanks again for all the advice.

Looking back I think I might have had a couple of KS lesions 3 yrs ago on my leg, right before I started meds.  Actually that's what prompted me to start.  But at the time my doc didn't seems too concerned about them - but he never seems too concerned about anything.  He didn't even reccommend I see a dermatologist.  I started meds and my VL went to zero almost immediately.  My CD4 count however went up very slowly.  But the lesions disappeared quickly.  So I put it out of my mind.

Haven't been feeling well lately, including a week and a half of night sweats when this thing appeared on my face (smack in the middle). 

Had blood work done a couple of days ago, hopefully I'm still UD and we'll see where my CD4's are.


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

 Bertrand Russell

Offline skeebo1969

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Re: Just found out I have KS
« Reply #10 on: September 02, 2010, 08:18:17 PM »
  


   Early detection and treatment are vital, so I am glad to hear your doctor was on top of this.  As the others have suggested get to the oncologist pronto.  Sorry you're having to deal with this, but thank heavens it didn't go unnoticed.

  Good luck to you sir!
I despise the song Love is in the Air, you should too.

Offline james262

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Re: Just found out I have KS
« Reply #11 on: September 07, 2010, 08:14:58 AM »
my doc thinks i might have KS.
but i was just diagnosed HIV+ a week ago
... my HIV specialist will be the one to determine if it actually is.

but from what i've read... it's not too big of a deal?  I think i read they can just inject it with steroids or something (but, yanno, anyone can put anything on the internet so that may not be true)


best of luck to you, though.

Offline Jeffreyj

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Re: Just found out I have KS
« Reply #12 on: September 07, 2010, 09:02:09 AM »
BMAN,

The advice of seeing an Oncologist is a great idea. I had KS in 1995. I had a raised purple legion on the inside of my wrist for a few years. Then I had a liver biopsy, I bleed internally and had a test done to see why. During this test, they found a KS legion in my small intestine.

There were 7 Dr's in my hospital room the next day, a few of whom were staring at their shoes. (Not a good sign) They wanted me to have surgery for it, and I had a 20% chance of surviving the operation.

Luckily, an oncologist saw my case, and suggested chemo. He cut back on some cocktail that he thought killed his previous patient, and in 3 months my wrist was heeled, and the small intestine was clean as a whistle.
So you can be cured of this for sure. Best of luck, it's awesome you seemed to have caught it early.
Positive since 1985

Offline Grasshopper

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Re: Just found out I have KS
« Reply #13 on: September 07, 2010, 06:36:06 PM »
This article was published today on aidsmeds:

http://www.aidsmeds.com/articles/hiv_ks_kaposis_1667_19063.shtml

Offline Jody

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Re: Just found out I have KS
« Reply #14 on: September 07, 2010, 11:32:50 PM »
Sorry for your diagnosis bman, hope they will get to it all and you should be fine as others have stated.  Think of it as a challenge and you've had some before and will deal with it.

Best of luck.

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline bmancanfly

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Re: Just found out I have KS
« Reply #15 on: September 08, 2010, 10:05:09 AM »
Thanks for all the posts. 

I see my ID doc tomorrow,  I will get an oncologist referral from him then.  Always prefer to go to someone he refers since they are usually more familiar with HIV issues than the average specialist.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline AlanBama

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Re: Just found out I have KS
« Reply #16 on: September 08, 2010, 11:36:24 AM »
Good luck, bman.   As others have stated, this is a very treatable condition (now).   I can vividly remember seeing friends dying, COVERED head to toe in KS lesions....a very cruel type of cancer indeed.  Of course, this was pre-protease era....

Keep us posted on your treatment, prognosis, etc.

Hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline aztecan

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  • 28 years positive, 56 years a pain in the butt
Re: Just found out I have KS
« Reply #17 on: September 08, 2010, 03:51:14 PM »
Hey Bman,

As others have said, I am glad the doc caught this early and you are takiing action. These days, with proper care, you have every chance of recovering and going on with your life.

Keep us posted on how things go.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline bmancanfly

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Re: Just found out I have KS
« Reply #18 on: September 10, 2010, 06:53:48 PM »
Thanks again for all your replies.

Well,  I saw my ID doc and got my new bloodwork results,  and it was surprisingly good news.

CD4 an all time high of 448 and CD4% also an all time high of 34%.   VL  <50.   

Doc was very surprised by KS biopsy results and tended to discount them somewhat,  esp. considering my new numbers.  He referred me to an oncologist and I'll see what he says.  But greatly relieved - for now.

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

 Bertrand Russell

Offline natthai

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  • The truth is not determined by majority vote.
Re: Just found out I have KS
« Reply #19 on: September 16, 2010, 06:12:27 AM »
Do you smoke tobacco?

At the risk of ostracization I will risk sharing something that I came across when I was researching the effects of smoking and HIV:

"Cigarette smoke concentrate inhibits Kaposi's sarcoma-associated herpesvirus infection"

In this study, we analyzed the effect of cigarette smoke concentrate (CSC) on KSHV infection of human foreskin fibroblasts (HFF) using real time quantitative RT-PCR. Our results demonstrated that the CSC-treated cells supported 50% lower infection of KSHV when compared to the untreated cells. Radiolabeled-binding assays indicated that CSC inhibited KSHV infection of cells at a post attachment stage of entry. Taken together, we report for the first time the ability of CSC to specifically inhibit KSHV infection of cells

you can find the study (first link returned) and a lot more by googling:

"Kaposi's sarcoma smoking"
Infection date: February 14, 2010 (yeah really)
08/03/2010 - CD4 621 (27%) VL 72,250
25/03/2010 - CD4 981 (28%) VL 122,719 <-started anti-oxidants (ABCDE, Se, ALA, NAC)
11/08/2010 - CD4 1,365 (31%) VL 5,451

Offline bmancanfly

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Re: Just found out I have KS
« Reply #20 on: November 27, 2010, 07:11:33 PM »
Well, $1300 and one CAT scan later (the insurance co. wouldn't go for a PET scan) it seems that I am in the clear for the moment.   No KS showed up internally,  and the lesion on my face has healed completely.

My doc had initially said he wanted to treatment the affected area with radiation but now says that there is too much "stuff" around there to risk it.  By "stuff"  I assume he means my face.  The plan is to continue watching it and see if this was just an anomaly or if it comes back again.

Feeling relieved.

Thanks everyone for the advice and well wishes.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline wtfimpoz

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  • Let's make biscuits!
Re: Just found out I have KS
« Reply #21 on: November 27, 2010, 07:19:09 PM »
Glad you're ok!
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline odyssey

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Re: Just found out I have KS
« Reply #22 on: November 27, 2010, 07:35:16 PM »
Great news bman! My good thoughts are with you that this is just a one time thing and nothing ever shows up again!

odyssey
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%     VL- 32415
11/09- started Truvada/Reyetaz/Norvir
03/10- stopped Truvada/Reyetaz/Norvir
10/18/11   CD4- 328   20%     VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
3/8/12      CD4- 503   31%     VL 57

Offline debsd222

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Re: Just found out I have KS
« Reply #23 on: November 27, 2010, 09:20:46 PM »
Great news Bman!
I had a ks scare when I was first diagnosed with a lesion inside my mouth. You hate to hear that word "biopsy". But all was well and it went away by itself. Congrats.
April 08 3 month bout w/ shingles, ongoing nerve pain
Dec 08 pos  cd4 200 %8  VL 18,000
Feb 09 started sustiva, truvada -allergic to sustiva, hospital 4 days.
March 09 started truvada, reyataz and norvir
March 09  cd4 279  % 12 VL 10,000
April 09 cd4 327  %12  VL 300
Aug 09 cd4 392  %16  Vl undetectable
Dec 09 hospital pneumonia 6 days
Dec 09 cd4 462  %20  VL undetectable
Mar 10 cd4 629 27% VL undetectable
July 9, 2010 cd4 505  21% VL undetectable
Oct 2010 cd4 689  22%  VL 64
Nov 2010  cd4689  22%  VL  UD
May 2013 cd4 759. 29%. VL. UD

Offline Jeffreyj

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Re: Just found out I have KS
« Reply #24 on: November 29, 2010, 02:10:16 AM »
$1300 well spent! congrats on this great news!
Positive since 1985

Offline emeraldize

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Re: Just found out I have KS
« Reply #25 on: November 29, 2010, 09:25:12 AM »
This is great news. Congrats!

Offline brenner

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Re: Just found out I have KS
« Reply #26 on: March 17, 2011, 07:56:11 AM »
how long before the lesion went away?  i have one on my leg, and just started atripla.
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 bmancanfly

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Re: Just found out I have KS
« Reply #27 on: March 17, 2011, 09:56:32 AM »
The most recent lesion on my face was removed surgically and biopsied.  That's how we knew it was KS.  It has not come back,  nor did the surgery leave a scar.

I did have,  what almost certainly,  were lesions on my leg before starting meds.   Just like you,   I started on Atripla,  with almost exactly the same numbers as you.   I went to UD very quickly and the KS disappeared completely without leaving a scar.  I honestly don't remember how long it took.  But I think it was a couple of months.

Now that you are on meds I think the KS lesions will go away on their own,  and you'll be fine.

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

 Bertrand Russell

Offline brenner

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Re: Just found out I have KS
« Reply #28 on: March 17, 2011, 10:04:55 AM »
thanks...feel better about it already.  glad you guys are here to talk about it. 
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 numbers

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Re: Just found out I have KS
« Reply #29 on: March 17, 2011, 10:51:45 PM »
It's good to hear the KS hasn't spread bman!  The KS lesions on my arms and legs continue to fade slowly as my CD4 count rises (now at 490) and I am hoping they will be even less noticeable by the time short-sleeve summer weather hits.  My doctors never suggested going to an oncologist or taking x-rays or other scans and the spots have been treated by a dermatologist using cryotherapy (liquid nitrogen) and a retinoid cream.  I wanted to ask though, because I have seen it referred to a few times in these forums, if anyone can explain the connection between poppers and KS?
Tested positive Feb. 2010 VL 181K CD4 161
Started Truvada, Prezista, and Norvir
Sept 2010 VL UD CD4 380
Jan 2011 VL UD CD4 450 I can sleep now thanks to Cipralex!
March 2011 VL UD CD4 490
September 2011 VL UD CD4 500

Offline Jody

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Re: Just found out I have KS
« Reply #30 on: March 21, 2011, 07:35:00 PM »
Dear bman...Good to hear that with your adherence to meds you have put KS behind you.  Numbers- there is currently another thread on poppers and the link to KS, like so many other things, in moderation is probably not so bad.  Good health to all.

Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

 


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