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.

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gayglenn | @gayglenn | Mar 20 4:51am
In reply to @newlife2222 "Hi Glenn I really appreciate you for telling your story. I’m new to both diseases. I..." + (show)
@newlife2222

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.

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Would love to chat with you and you can just pick my brain if you'd like. I remember the early days of my HIV+ diagnosis and it was not pretty. Am glad to hear you have been treated for the KS and seem to be doing well on the chemo. It is a process and I found it does get better if the initial treatments were a little tough.
Next couple days am entertaining friends visiting from San Francisco but will reach out over the weekend and maybe we can set aside some time to talk then if you are able to do so. Glad you reached out and stay strong !

Glenn

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1 reply
newlife2222 | @newlife2222 | Mar 20 5:59pm
In reply to @gayglenn "Would love to chat with you and you can just pick my brain if you'd like...." + (show)
@gayglenn

Would love to chat with you and you can just pick my brain if you'd like. I remember the early days of my HIV+ diagnosis and it was not pretty. Am glad to hear you have been treated for the KS and seem to be doing well on the chemo. It is a process and I found it does get better if the initial treatments were a little tough.
Next couple days am entertaining friends visiting from San Francisco but will reach out over the weekend and maybe we can set aside some time to talk then if you are able to do so. Glad you reached out and stay strong !

Glenn

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Sure I would love that.

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gayglenn | @gayglenn | Mar 22 1:12pm

send me some times you would want to chat and hopefully we can make this happen

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1 reply
newlife2222 | @newlife2222 | May 7 9:01pm
In reply to @gayglenn "send me some times you would want to chat and hopefully we can make this happen" + (show)
@gayglenn

send me some times you would want to chat and hopefully we can make this happen

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Hey Glenn sorry for the late response sure any time after noon is fine eastern time is fine for me.

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gayglenn | @gayglenn | May 8 10:01am
In reply to @newlife2222 "Hi Glenn I really appreciate you for telling your story. I’m new to both diseases. I..." + (show)
@newlife2222

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.

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Hi newlife - sorry just not responding to this-
I get the emotionally drained part and the depression. There are still days I think of my first hours after receiving my diagnosis and it brings me to tears - after 34 years. I felt so alone, especially in 1988 - all my friends that I knew were + were getting very sick and I envisioned that would be me in a few months. The depression was unbearable at times and cannot say that suicide was not on my mind. Find a good therapist for yourself to help you through this. My best advice to you is to adhere to your drug regimen and do not miss a dose. Have you told any family or friends? They will not understand for sure but hopefully one or two will step up and be your 'rock' when you need it. Let me know how you are doing and write whenever you feel the need or have questions.

REPLY
1 reply
newlife2222 | @newlife2222 | May 8 1:10pm
In reply to @gayglenn "Hi newlife - sorry just not responding to this- I get the emotionally drained part and..." + (show)
@gayglenn

Hi newlife - sorry just not responding to this-
I get the emotionally drained part and the depression. There are still days I think of my first hours after receiving my diagnosis and it brings me to tears - after 34 years. I felt so alone, especially in 1988 - all my friends that I knew were + were getting very sick and I envisioned that would be me in a few months. The depression was unbearable at times and cannot say that suicide was not on my mind. Find a good therapist for yourself to help you through this. My best advice to you is to adhere to your drug regimen and do not miss a dose. Have you told any family or friends? They will not understand for sure but hopefully one or two will step up and be your 'rock' when you need it. Let me know how you are doing and write whenever you feel the need or have questions.

Jump to this post

Yes I told some people that actually helping me get through this. Everything you had said I’ve thought of doing but i keep my mind clear and positive.. thanks again. I will message you on an update hopefully one day we can talk on the phone.

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