1. < Sarcoma

Kaposi’s Sarcoma: Just want to talk

Posted by sagan7 @sagan7, Aug 8, 2024

I’m a 43 year old man who has been living with Kaposi’s Sarcoma for the past 10 years. I don’t have HIV and developed the disease for unknown reasons. The worst part of this disease is its rarity. In this whole time, I’ve never met another human being with this awful disease despite desperately searching online for even one single soul. Is there anyone out there who has this, who is going through the same pain and challenges? After all this time, I still hold out hope that someday I’ll make that contact.

Interested in more discussions like this? Go to the Sarcoma Support Group.

gayglenn | @gayglenn | May 26 3:38pm
In reply to @adi21 "hello i am from europe and i was diagnosed with classical kaposi sarcoma in 2023.hiv negative..." + (show)
@adi21

hello
i am from europe and i was diagnosed with classical kaposi sarcoma in 2023.hiv negative
i would like to know more about this disease and treatment
thank you

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Hello adi -
Happy to make your acquaintance. KS is usually associated with men of Mediterranean descent. It presents as red or purple lesions on the skin: face, arms legs, and can also affect internal organs such as the throat, stomach, liver and rectum.
In my case I have been HIV+ for over 34 years with an undetectable viral load. Very rare for someone who is + with and undetectable viral load to develop this disease. Early on in the AIDS epidemic it was very prominent in patients and was a big cause of death for many patients.

My treatment has been with chemo infusions, drug is Doxil and so far has been very effective for me. Infusions usually take about and hour and have caused me mild side effects. Other treatments can be radiation and immunotherapy.

Currently the lesions are in remission and have not had a treatment in over a year. Am very happy with that result. If you have any questions or want to chat please don't hesitate to get in touch.

Good luck to you in your journey.

Sincerely,
Glenn

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | May 31 11:34am
In reply to @dennisplynch "I was recently diagnosed with Kaposi Sarcoma. I am seeking second opinions and treatment options, but..." + (show)
@dennisplynch

I was recently diagnosed with Kaposi Sarcoma. I am seeking second opinions and treatment options, but in the meantime would appreciate any insights into other’s experiences with KS

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I add my welcome, @dennisplynch. I moved your post to this discussion so you can more easily connect with other members living with Kaposi's sarcoma.

- Kaposi’s Sarcoma: Just want to talk https://connect.mayoclinic.org/discussion/kaposis-sarcoma/

How are you doing with your search for care and treatment options?

REPLY
adi21 | @adi21 | Jun 1 11:49pm
In reply to @colleenyoung "Welcome @sagan7. I moved your discussion about living with Kaposi’s Sarcoma to the Sarcoma support group..." + (show)
@colleenyoung

Welcome @sagan7. I moved your discussion about living with Kaposi’s Sarcoma to the Sarcoma support group here: https://connect.mayoclinic.org/group/sarcoma/

I'm also tagging fellow Kaposi members like @bigredd566 @zaptor88 @kaposi @jrs2024 @ggarca @leroy23, who may wish to share their experiences and answer some of your questions.

@sagan7. can you help get the conversation started? What challenges are you facing living with Karposi?

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Hello
I am 58 years old and 2 years ago I was diagnosed with classic Kaposi's Sarcoma HIV negative
. Coincidentally or not, the disease appeared in me after the third dose of the Pfizer vaccine for covid 19. What country are you from and what treatment have you used so far?
What stage is the disease?
I went to Italy to see Dr. Lucia Brambila, the doctor who classified the disease according to the lesions.
I have stage 2b out of 4 stages. I only have lesions on my lower limbs. I had radiotherapy in 2023 and 2024.
The doctor forbade me from having radiotherapy and recommended compression stockings and Imunmens, a medicine that contains vitamin. Give me an email address so we can talk more easily.

REPLY
1 reply
gayglenn | @gayglenn | 6 days ago
In reply to @adi21 "Hello I am 58 years old and 2 years ago I was diagnosed with classic Kaposi's..." + (show)
@adi21

Hello
I am 58 years old and 2 years ago I was diagnosed with classic Kaposi's Sarcoma HIV negative
. Coincidentally or not, the disease appeared in me after the third dose of the Pfizer vaccine for covid 19. What country are you from and what treatment have you used so far?
What stage is the disease?
I went to Italy to see Dr. Lucia Brambila, the doctor who classified the disease according to the lesions.
I have stage 2b out of 4 stages. I only have lesions on my lower limbs. I had radiotherapy in 2023 and 2024.
The doctor forbade me from having radiotherapy and recommended compression stockings and Imunmens, a medicine that contains vitamin. Give me an email address so we can talk more easily.

Jump to this post

Hi adi-
My personal email is glenn.baker2043@yahoo.com for easier communication.
As i stated previously stated am HIV+ for 34 years but recently developed KS in October 2020
I have not associated my diagnosis with Covid vaccines but could have been a trigger - was never discussed with oncologist as KS is known to signify a progression from HIV+ status to AIDS, I have only had chemo treatments with the drug Doxil - has been very effective - radiation was mentioned but oncologist said results were usually not as good as with the Doxil - I am in remission and have been for over a year now. 6 month checkups are the norm now.
I am in the US and my treatment was at HUP - Hospital at the University of Pennsylvania.

Get in touch if you'd like - always available for chat.

Glenn

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