Just found out I have KS

[bmancanfly]

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?

[Matty the Damned]

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

[veritas]

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

[Jeff G]

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 .

[bmancanfly]

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.

[Matty the Damned]

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

[bmancanfly]

thanks Matty. 

[Tim Horn]

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

[Jeff G]

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 .    

[bmancanfly]

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.

[skeebo1969]

  


   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!

[james262]

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.

[Jeffreyj]

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.

[Grasshopper]

This article was published today on aidsmeds:

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

[Jody]

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

[bmancanfly]

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.

[AlanBama]

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

[aztecan]

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

[bmancanfly]

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.

[natthai]

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"

[bmancanfly]

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.

[wtfimpoz]

Glad you're ok!

[odyssey]

Great news bman! My good thoughts are with you that this is just a one time thing and nothing ever shows up again!

odyssey

[debsd222]

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.

[Jeffreyj]

$1300 well spent! congrats on this great news!

[emeraldize]

This is great news. Congrats!

[brenner]

how long before the lesion went away?  i have one on my leg, and just started atripla.

[bmancanfly]

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.

[brenner]

thanks...feel better about it already.  glad you guys are here to talk about it. 

[numbers]

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?

[Jody]

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