Kaposi’s Sarcoma: Just want to talk

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?

I have it since March 2024 Would like to know your experience? Find it difficult treatment etc
Would like to hear from you
best
Bernie

Hi Bernie - My doctor is associated with Penn Medicine at HUP. He was referred to by my Infectious Disease specialist who I have seen for the past 28 years. Dr. Henry, my oncologist, immediately put me on Doxil chemo treatments when I first saw him. I had lesions on both arms, legs, hips. Have had several treatment cycles of Doxil and am currently on a treatment break. Scheduled to see him on March 17th for 6 month check.
When initially starting treatment I would experience some nausea and tiredness after. Treatment is administered intravenously and usually takes about an hour. They give me pre-treatment doses of Benadryl and Zofran to help alleviate the side effects. Eventually the side effects of treatment lessened and are very mild if present at all now.
What treatment(s) have you had and have they been effective for you? Would like to know your experiences as well.

Happy to meet you,
Glenn

Am here if you want to reach out. Happy to answer any questions you may have. Have been treated with Doxil (chemo) and it has been very effective for me.

Best on your journey,
Glenn

Hello sagan7
Happy to discuss or chat with you anytime. Have you had treatments for your KS - if so what have you been doing and has it been effective for you. Any side effects? KS has been around for a long time and was traditionally seen in men of middle eastern descent but with the advent of HIV it became one of the opportunistic infections of those infected. Had several friends die in the late 80's early 90's of this.

Again just trying to see where you are at after 10 years and how you have coped. Happy to chat when you are ready.

Glenn

Welcome, @gayglenn. Good to hear that the side effects subsided with subsequent treatments. I'll be thinking of you as you prepare for your upcoming 6-month check-up and look forward to your update.

Hi Colleen - Had my 6 month check yesterday and all was good. Labs were great and no new lesions to report so do not have to return for another 6 months. Thanks for your thoughts and well wishes.

Glenn

I’ve been newly diagnosed with Kaposi Sarcoma November of 2024 at the age of 31. This is something new to me and at time it was very stressful. But I been doing chemo for 4 months now and it has gotten better. Would love to talk to other people who are going through the same thing as I am.

Hi newlife2222
Name is Glenn and was diagnosed with KS in Oct 2022. Was and still have viral load of 0/undetectable. Have had Doxil treatments up until Feb of 2024 - currently no treatments since then and my last checkup was this past Monday and no new lesions detected and all bloodwork was great.
HIV+ for 34+ years at this point.
Happy to share experiences or just chat about this or anything else. Just turned 76 in Feb this year.
Hope to hear from you.'
Glenn

Hi Glenn I really appreciate you for telling your story. I’m new to both diseases. I have been emotionally drained and depressed for several days now and it’s a lot to deal with. Would love to talk to you more about it.