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Kaposi’s Sarcoma: Just want to talk
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.
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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
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2 ReactionsI 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?
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.
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
I too have Kaposi sarcoma …
I would love to talk about this. I’ve been diagnosed with KS
Glenn,
Please let me know if it’s OK to reach out to you. Thank you.
Dennis
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tell me more about the disease
type of Kaposi sarcoma, how it started, symptoms and treatment
Hi Dennis -
Certainly you may reach out to discuss any issues around the topic. The more knowledge you have the better equipped so you can deal with the disease and issues surrounding it.
Glenn
Hi ramiro - Name is Glenn and was diagnosed back in 2021. Am currently getting ready to go for chemo treatment today. Had a restart of treatment 2 weeks ago as I found a few new lesions that had started where old ones were located. Will write more when I can to answer your questions.
Thoughtfully-
Glenn