Meds, Mind, Body & Benefits > Questions About Treatment & Side Effects

A couple of questions about Kaposi Sarcoma...

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I hope I'm posting this in the right spot...if not, feel free to move it :)

I have a spot on the tip of my nose that my ID thinks is showed up after starting treatment, but has since gotten smaller...not by a lot, and it's not huge to begin with. She told me the anti-retros should help in making it go away, but we can always radiate it off or go through chemo.

I really don't want to go through chemo for a small spot like this, and especially since I've been feeling so good lately, I don't want to ruin I think I'll go the radiation route.

I guess my main question is, has anyone else had issues with KS and what did you end up doing to treat it? I don't have any other spots on my body, just this one that makes me look like Rudolph. Is it really true that the anti-retros will help? How long does it take to go away? It's been sitting here staring back at me when I look in the mirror for about 2 or 3 months now  :P



Hpe this helps


--- Quote from: Bsc86 on December 28, 2012, 03:12:34 AM ---
I have a spot on the tip of my nose that my ID thinks is KS.

--- End quote ---

Your doctor should not be recommending chemo or radiotherapy until your spot has been biopsied to find out what is actually going on. It may not be KS at all. She shouldn't be recommending serious treatments going by a guess. She should know before she starts making treatment recommendations, not just "think". 

If biopsy does prove it to be KS, a small spot like you describe should fade away after you've been on the hiv meds for a while. You started with a really low CD4 count, so give it time. We've had quite a few men with KS here over the years and most of them (particularly ones with only one small spot) didn't need chemo or radiotherapy to get rid of it - the hiv meds were sufficient.

You may want to take a closer look at this doctor. I'm not sure I would trust a doctor who started throwing ideas out there like chemotherapy when a proper diagnosis has not yet been obtained.

Ask about getting the spot biopsied. That's what I would do before even thinking about chemo or radiotherapy.

Jeff G:
I have had KS and I agree with Ann's advice 100 % , not that she needs my endorsement .

I had chemo and radiotherapy treatments and looking back I wish I had waited for them to fade when I began ART . If a biopsy confirms its KS and you are only dealing with a small lesion I would think that chemo and radiation treatments are a bit too aggressive of a treatment plan , especially since you say the lesion is fading already . 

Thanks Ann, and JG. I guess I should re-phrase and add that she didn't tell me what it was, just suggested that it looked like a KS spot, and that I would need to get it checked out to know for sure. She mentioned radiation or chemo as options that are available to treat it, but also mentioned the anti's should take care of it. She didn't say definitely what it was. And she only mentioned the chemo and radiation after I asked how to get rid of it.

JG - yeah, it's not very big. It just bugs's getting smaller, just really slowly. Good to know I just need to be more patient :)


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