Welcome, Guest. Please login or register.
September 28, 2016, 02:54:17 PM

Login with username, password and session length

  • Total Members: 29242
  • Latest: rsk_rsk
  • Total Posts: 700400
  • Total Topics: 55528
  • Online Today: 327
  • Online Ever: 1421
  • (August 13, 2016, 05:18:44 AM)
Users Online
Users: 6
Guests: 208
Total: 214


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: need help/ advice with karposis sarcoma 30 year old female with it! help!  (Read 4070 times)

0 Members and 1 Guest are viewing this topic.

Offline meganmanchester

  • New Member
  • Posts: 2
 ??? :'( hi guys. i am a 30 year old female, have been living with hiv for 5 years with no major issues. until now, karposis sarcoma, mainly amoung guys blah blah blah.. not true here i am one of the small percentages of women that has this, they started out small and fairly un noticable in which i could hide with my makeup they are now darker and more defined.

i am without insurance right now for a few reasons, i am staying with my terminally ill mother 2000 miles from where my home/ doctor is and until she passes am not going home.

i need advice please! any home remedys for this, i have been googling PANRETIN in which my doctor told me when i get home he could see me and prescribe but with me losing my insurance and not going to be home until god knows when i can't wait they are taking over my face..

does anyone know if you can buy it online.. please help.. someone.. thanks and happy holidays!

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,756
Re: need help/ advice with karposis sarcoma 30 year old female with it! help!
« Reply #1 on: November 30, 2008, 06:57:39 PM »
I am not familiar enough with KS to be giving advice.  I only wish you well and that you find some treatment soon.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info http://www.aidsmap.com/Condoms/page/1044833/
Please check out our lessons on PEP and PrEP. http://www.poz.com/factsheets/fs_2014_09_prep.pdf


Offline vanlefar

  • Member
  • Posts: 16
Re: need help/ advice with karposis sarcoma 30 year old female with it! help!
« Reply #2 on: November 30, 2008, 08:51:05 PM »

I am sorry to hear about your mother. I also am sorry I don't know of a homereamdy for KS, however my partner has KS on the face, and  he uses Dermablend. The make up does NOT treat the KS ,but it helps to keep it mostly covered. I wish you luck with everything.

Best Wishes

Offline mecch

  • Member
  • Posts: 13,142
  • red pill? or blue pill?
Re: need help/ advice with karposis sarcoma 30 year old female with it! help!
« Reply #3 on: November 30, 2008, 09:06:20 PM »
I am sure the experts in this forum will soon give you more precise advice, but I want to say that if you have KS you probably really need to be on HIV treatment (tri-therapy) now.  I think you need to get to a health clinic or AIDS service organisation in the city where you are!  KS can be treated with HIV treatment. 

It is honorable that you are helping your mother but please, take the time to also go get some treatment for yourself.  ASAP - as soon as possible.  Do NOT wait.

Wishing you the best.

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline aztecan

  • Member
  • Posts: 5,510
  • 30 years positive, 58 years a pain in the butt
Re: need help/ advice with karposis sarcoma 30 year old female with it! help!
« Reply #4 on: November 30, 2008, 09:50:01 PM »
Hey Megan,

Here is a link to some info on KS treatments:


And here are some links to info on the medication itself:



The medication you mention is the only topical creme used to treat KS. The other treatments involve radiation and other types of cancer treatment. From what I can tell, it is available only by prescription.

However, if you are showing up with KS lesions, Mecch was pretty spot on regarding the need to follow up with a doctor.

If you don't mind my asking, what were your last labs? While KS doesn't always correlate with low CD4s, when it shows up, it is often a good indication your T-cells may be too low and ARV therapy (i.e. going on the meds) may be in order.

Are you in England? I note you say Megan in Manchester, so I assumed you are in the United Kingdom.

I know you are determined to remain with your terminally ill mother, which I can fully understand. Would it be possible to access medical care where you are now, even if only temporarily?

This doesn't sound like something that can really wait.

Let me know what you think and how you are doing.



« Last Edit: November 30, 2008, 10:03:01 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline meganmanchester

  • New Member
  • Posts: 2
Re: need help/ advice with karposis sarcoma 30 year old female with it! help!
« Reply #5 on: November 30, 2008, 10:47:27 PM »
Hi everyone, Hi MARK!

thanks for the quick replys... my numbers are still in the no meds mark, at least they were before i came out here.. with the new developments on my face i am not too sure what they are now, my mom has been my main concern. can you order the panretin online without a precription? any additional help you can email me at my email benrawlings93@yahoo.com ben is not an allias- it is the 2 names of my dogs put together... :) any help feel free to email me..

oh and i am in the states:)

Offline Peter Staley

  • Member
  • Posts: 1,338
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: need help/ advice with karposis sarcoma 30 year old female with it! help!
« Reply #6 on: December 01, 2008, 09:37:24 AM »
Megan -- how was your KS diagnosed?  Did your doctor do a biopsy?

You can read this page about diagnosing KS:

Offline Jacques

  • Member
  • Posts: 171
Re: need help/ advice with karposis sarcoma 30 year old female with it! help!
« Reply #7 on: December 02, 2008, 01:50:35 AM »
my numbers are still in the no meds mark, at least they were before i came out here..

Hi Megan,

I had Kaposi sarcoma back in 1995 with Cd4s being around 465. I was not yet on medication  because my health was excellent.   My doctor tried first to treat the lesions with topical chemotherapy (Vinblastin) but this left me with scars that took almost ten years to disappear. As new lesions were still developping, despite the treatment, we decided to begin the tritherapy. (AZT,Crixivan,3Tc). Two months later the new lesions began to fade and finally disappeared completely  a few months later. Being undetectable since, Kaposi never came back.

It is now known that Kaposi can occur when the virus is active (detectable) even with higher Cd4s. So I urge you not to try to treat yourself with internet bought products. As Peter pointed, make sure first that your doctor have diagnosed correctly the Kaposi lesions and discuss with him/her the possibility of starting the therapy right away.

Living positively since 1987
latest lab :july 2010
Undetectable Cd4 1080
43% on Reyataz/Norvir/Truvada


Terms of Membership for these forums

© 2016 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.