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Diagnosed with sarcoma? Let's share

Posted by Colleen Young, Connect Director @colleenyoung, Jun 21, 2017

Because sarcomas are rare, I would like to start a conversation to help connect people living with sarcoma or caring for someone with sarcoma.

As you know, sarcoma is the general term for a broad group of cancers that begin in the bones and in the connective or soft tissues (soft tissue sarcoma). There are many different types and sub-types of sarcomas, for example: angiosarcoma, chondrosarcoma, Ewing’s sarcoma, fibrosarcoma, gastrointestinal stromal tumor (GIST), Kaposi's sarcoma, leiomyosarcoma, liposarcoma, malignant peripheral nerve sheath tumor, osteosarcoma, pleomorphic sarcoma, rhabdomyosarcoma, synovial sarcoma and more.

Let's get to know one another. Why not start by introducing yourself? What type of sarcoma have you been diagnosed with?

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

Moderator
Colleen Young, Connect Director | @colleenyoung | 2 days ago
In reply to @gayglenn "Hello - I have been HIV+ for close to 34 years and am undetectable. I was..." + (show)
@gayglenn

Hello - I have been HIV+ for close to 34 years and am undetectable. I was diagnosed with Kaposi Sarcoma in October 2021. Have been treated with Doxil intravenous and KS is currently dormant. Are there other treatments for this disease and if so are they well tolerated and effective. What is the prognosis for someone in this situation. I am currently 76 and long term survivor of HIV. Also how rare is it that someone undetectable can suddenly develop KS. I remember all my friends who died from this and pneumocystis back in late 80's and early 90's.

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Welcome, @gayglenn. You might be interested in this related discussion:
- Kaposi’s Sarcoma: Just want to talk https://connect.mayoclinic.org/discussion/kaposis-sarcoma/

I'm glad to hear that chemo has worked. Did your oncologist say that it is in remission? Do you continue with doxorubicin liposomal (Doxil) or are you on a treatment break right now?

REPLY
gayglenn | @gayglenn | 2 days ago

Yes - chemo has been fairly effective. Currently on treatment break - next appt. scheduled for March 17th. Have not noticed any new lesions. Have a dermatologist appt. also scheduled this month. Thanks for the shout out and glad to be here. Am checking out the discussion you suggested.

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