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Author Topic: need help/ advice with karposis sarcoma 30 year old female with it! help!  (Read 2878 times)

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Offline meganmanchester

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 ??? :'( 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

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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

Offline vanlefar

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

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

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  • 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

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  • 29 years positive, 57 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:

http://www.aidsmeds.com/articles/KS_6755.shtml

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

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a601012.html

http://www.webmd.com/drugs/drug-16973-Alitretinoin+Top.aspx?drugid=16973&drugname=Alitretinoin+Top

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.

HUGS,

Mark

« 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

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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

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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:
http://www.aidsmeds.com/articles/KS_6754.shtml

Offline Jacques

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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.

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

 


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