POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Bsc86 on December 28, 2012, 03:12:34 am
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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 KS...it 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 it...so 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
Thanks!!
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http://www.aidsmeds.com/articles/KS_6752.shtml
Hpe this helps
g
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I have a spot on the tip of my nose that my ID thinks is KS.
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.
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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 .
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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 me...it's getting smaller, just really slowly. Good to know I just need to be more patient :)
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Thanks for the clarification. I'm glad your doctor sounds more competent than she did at first. It never hurts to give details so as to avoid misunderstandings. ;)
You've only been on meds for a short time, so patience is definitely needed. You'll get there.
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JG - yeah, it's not very big. It just bugs me...it's getting smaller, just really slowly. Good to know I just need to be more patient :)
I know the feeling of it bugs me ... I was so wanting the KS off my body I almost begged to be put in chemo and it turned out to be a case of be careful what you hope for . Its good to hear the your doctor is taking a conservative approach and it sounds like you are in good hands .
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I had a KS lesion the size of a dime on the tip of my nose (talk about being obvious!) and a smaller spot on a cheek. A biopsy on the cheek confirmed the KS. Over about two months of HAART my lesions disappeared - I also had them on a lung and small intestine. I probably should share my diagnosis story but it's so complicated I may be typing for days.
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You mentioned in another thread that you had valley fever. That particular fungal infection mimics KS in the way it manifests. Without a definitive diagnosis, you're just causing yourself needless worry.
I still love this saying from long ago; if you expect and dwell on the worst and it comes true then you've lived it twice. If not, you worried needlessly.
Take care and best wishes
Wolfie
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I have a ks lesion, but its now in remission after being on haart. It was raised and hard before, but now its flattened out completely. I just came back from the dermatologist who said its gone, but the pigmentation will not fade any more than it has...so if i want it removed, i would need a cosmetic removal which we both thought is unnessacery. So im relieved, and will just have to accept my mark as a new part of me.
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Thanks everyone for the advice 8) I will definitely give it more time. I can deal with a mark on my nose...just the bump itself is what bugs me. Someone suggested covering it with concealer...but I'm not that desperate lol
Brenner - just wondering, how long did it take for yours to go away? I've been doing the HAART thing since October. Though, since switching Truvada to Epzicom, I've been feeling amazing and I can feel things getting better. Also, sometimes scars and marks are sexy :P
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I would say a couple of months and the bump was gone, but the colour still remains, albeit a little lighter than before. But the dermatologist confirmed that its under remission.
Atripla has been great for me... Almost 2 years on it and feeling great.