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Author Topic: I've got a few questions, been diagnosed a little over a year now with AIDS  (Read 1543 times)

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Offline sidekick

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  • Posts: 3
Okay, it's been a while since I posted anything, so here it goes. I tested poz back in June of 2012 with AIDS and KS. My VL was 99,980/CD4 was 163. I'm 29, work full time, been through a few issues, as stated in my last two post but moving forward on those. When I tested pos they found KS in my mouth, arms, back, and a few spots on my legs. The doctors all keep insisting CONSTANTLY that I'm going to live for a VERY long time, I just have that thought in the back of my head that I'm gonna kick the bucket any day and it does get me down some times. As of today, I've been undetectable for over 7 months, give or take a few my VL stays between 20-40 copies, my CD4 went from a 168 to 379, but now its back down to 320 because I just finished a month of radiation treatment to my feet, and mouth for the KS.

My questions are about the KS mainly. I finished treatment and the results are VERY good, the KS has completely went away in the roof of my mouth, but on my toes I can still see them they are extremely light, and the doctors tell me that its just dead cancer cells, they're flat now, and I can walk without pain. I have noticed since I started the atripla a few lesions went completely away, others got lighter, and flattened out, however a few new small ones have appeared on my legs? Will the KS eventually go away. Docs keep saying they will, I'm just tired of looking like a leopard LOL! I'm 29 and have become a hermit outside of work when it comes to going out and about, I rarely leave the house because of my unsightly KS. People have been VERY judgmental, especially in the gay community, but I look at it this way, unlike them, at least I KNOW my status and don't lie about it or act like it doesn't exist. Other then that I'm very healthy in regards to all my blood work. No other STI's no resistance to the meds, and I'm also taking Acyclovir 400mg twice a day as a suggestion for the KS. Any suggestions as to what other steps I might take? Doc wants me to go back in for more radiation on my arms, but I have to wait till I build up sick leave and vacation time at work again since I was off for almost a month and a half, I burned up all my sick leave and vacation while I was taking treatment.
"Life's not the breaths you take, but the moments that take your breath away"

Offline WillyWump

  • Member
  • Posts: 7,184
  • your ramblings bore Yamaguchi Kitteh
Re: I've got a few questions, been diagnosed a little over a year now with AIDS
« Reply #1 on: September 29, 2013, 10:18:42 AM »
Hi Sidekick, I don't know much about KS but just wanted to pop in and say congrats on the good results you've had in treating it. I admire your attitude through it all.

-W
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Jeff G

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  • How am I doing Beren ?
Re: I've got a few questions, been diagnosed a little over a year now with AIDS
« Reply #2 on: September 29, 2013, 10:19:43 AM »
Hi Sidekick . I recovered from KS but it was a bit of a struggle getting there . I had chemo and radiation but the thing that had the biggest impact on my KS was Atripla and time .

I have to noticeable scars on my legs due to the KS and more so from the radiation , the spots have faded but the radiation I got in that area left me with no hair on my legs where they zapped me . No one would guess it was KS now that its resolved but I do get comments some time about the way my legs look .

I had people ask me to wear long pants and I did for a year or more but then I decided to put my shorts back on and not let insensitive jerks make me feel bad about my self .
I know its hard to deal with visible KS both medically and physiologically and I'm not discounting that but please know that it takes time for them to fade and in a year or two they will be all but gone .

Offline mecch

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  • Posts: 11,702
  • red pill? or blue pill?
Re: I've got a few questions, been diagnosed a little over a year now with AIDS
« Reply #3 on: September 29, 2013, 10:29:53 AM »
Its great news that things are progressing.
I am sorry that people judged you.  How especially horrific and depressing that other gays did so.
As of today, are any KS spots visible when you are dressed?  If not, the fear that you will be observed, identified and judged, may be residual, from the trauma last year.
Also if anything is visible, there are concealers.... Did you ever try that.  Not that you should have to hide anything, mind you.  But if it gives you confidence....
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tednlou2

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  • Posts: 4,886
Re: I've got a few questions, been diagnosed a little over a year now with AIDS
« Reply #4 on: September 29, 2013, 03:01:01 PM »
Glad to hear things are going so much better.  I can't imagine getting my diagnosis and also told I have to do radiation for cancer.  That is so great the lesions are gone or almost gone.  And, you can walk without pain.

Offline harleymc

  • Member
  • Posts: 214
Congratulations.

My experience with KS was that my Dr put me on a very intensive ARV regime with 5 drugs and that within 6 weeks they were starting to fade. I didn't undergo any chemo or radiotherapy. My regime got lightened and simplified about a year later.

A couple of years down the line and there are still about 6 scars that are faint (I had more than 40 lesions). They are barely noticeable, I only really know they are there because I look for the sites of the biggest lesions, just to remind myself of how big the improvement is.

Wishing you well.


Offline wolfthorn

  • Member
  • Posts: 85
 My KS faded pretty quickly on HAART alone, now I can barely see it. I really am hoping it keeps fading and so I can avoid chemo or radiation. There are studies now of using lenalidomide (a thalidomide analog) for treatment of KS. I know one is going on at Memorial Sloan Kettering, I think there are other hospitals participating as well. You should check it out.
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline Theyer

  • Member
  • Posts: 2,511
  • Current ambition. Walk the Dog .
Since combo therapy all the people I have known with KS made a full recovery from it. Just like to add my support to you with dealing with the stupedo,s in your area.
The best of the Best to you.
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

 


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