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Author Topic: A couple of questions about Kaposi Sarcoma...  (Read 1771 times)

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Offline Bsc86

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  • Posts: 25
A couple of questions about Kaposi Sarcoma...
« on: December 28, 2012, 03:12:34 AM »
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!!
09/25/2012 - Diagnosed. CD4: 8. VL: unknown
Started HAART - Norvir, Prezista, Truvada
10/15/2012 - CD4: 18. VL: unknown (hospital never told me VL counts)
11/28/2012 - CD4: 114 (bad test)
12/08/2012 - CD4: 54, VL: 223
                   Switched to Norvir, Epzicom, and Prezista
01/08/2013 - CD4: 232, VL: 182

Current regimen: Norvir, Prezista, Epzicom

Offline Growler

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  • Posts: 559
Re: A couple of questions about Kaposi Sarcoma...
« Reply #1 on: December 28, 2012, 08:25:29 AM »
“If loving someone is putting them in a straitjacket and kicking them down a flight of stairs, then yes, I have loved a few people.”

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: A couple of questions about Kaposi Sarcoma...
« Reply #2 on: December 28, 2012, 09:17:35 AM »

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.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Jeff G

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  • How am I doing Beren ?
Re: A couple of questions about Kaposi Sarcoma...
« Reply #3 on: December 28, 2012, 09:29:28 AM »
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 . 

Offline Bsc86

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  • Posts: 25
Re: A couple of questions about Kaposi Sarcoma...
« Reply #4 on: December 28, 2012, 11:18:07 AM »
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 :)
09/25/2012 - Diagnosed. CD4: 8. VL: unknown
Started HAART - Norvir, Prezista, Truvada
10/15/2012 - CD4: 18. VL: unknown (hospital never told me VL counts)
11/28/2012 - CD4: 114 (bad test)
12/08/2012 - CD4: 54, VL: 223
                   Switched to Norvir, Epzicom, and Prezista
01/08/2013 - CD4: 232, VL: 182

Current regimen: Norvir, Prezista, Epzicom

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: A couple of questions about Kaposi Sarcoma...
« Reply #5 on: December 28, 2012, 12:04:56 PM »
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.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Jeff G

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  • Member
  • Posts: 10,846
  • How am I doing Beren ?
Re: A couple of questions about Kaposi Sarcoma...
« Reply #6 on: December 28, 2012, 12:38:34 PM »


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 .   

Offline DrewEm

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Re: A couple of questions about Kaposi Sarcoma...
« Reply #7 on: December 29, 2012, 12:12:37 AM »
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.

Offline wolfter

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  • Posts: 4,391
Re: A couple of questions about Kaposi Sarcoma...
« Reply #8 on: December 29, 2012, 12:45:34 AM »
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
productivity breeds content

Offline brenner

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  • Posts: 90
Re: A couple of questions about Kaposi Sarcoma...
« Reply #9 on: December 31, 2012, 04:24:26 AM »
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.
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 Bsc86

  • Member
  • Posts: 25
Re: A couple of questions about Kaposi Sarcoma...
« Reply #10 on: December 31, 2012, 01:22:11 PM »
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
09/25/2012 - Diagnosed. CD4: 8. VL: unknown
Started HAART - Norvir, Prezista, Truvada
10/15/2012 - CD4: 18. VL: unknown (hospital never told me VL counts)
11/28/2012 - CD4: 114 (bad test)
12/08/2012 - CD4: 54, VL: 223
                   Switched to Norvir, Epzicom, and Prezista
01/08/2013 - CD4: 232, VL: 182

Current regimen: Norvir, Prezista, Epzicom

Offline brenner

  • Member
  • Posts: 90
Re: A couple of questions about Kaposi Sarcoma...
« Reply #11 on: December 31, 2012, 02:22:30 PM »
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.
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

 


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