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Diagnosed with sarcoma? Let's share
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?
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Myxofibrosarcoma in lower left extremity…
@blender, welcome. You might appreciate joining this related discussion.
- Solitary Fibrous Tumor: Anyone have experience with this?https://connect.mayoclinic.org/discussion/solitary-fibrous-tumor/
How are you doing on temozolomide with bevacizumab treatment?
Hello everyone - Solitary Fibrous Tumor (recurring) here. Originally identified in July 2024, when my primary care doc informed me I was actually not getting middle-aged dad body (as I had just assumed) and had a CT scan done. The original tumor was massive (27 x 27 x 13 cm), and removed via surgery in October 2024. Fast forward to April 2026, when lesions appeared on my liver. The biopsy indicated a resurgence of the same type of tumor I had before... the twist is they can't find it. They did a PET scan and couldn't ID any abnormal activity.
So now I'm on my fourth day of my first cycle of chemo (Temozolomide along with Bevacizumab infusions).
Thanks for reading, and it's a bit comforting to know there are others out there.
This week's member spotlight features a member of the Sarcoma support group who many of you have crossed paths with. Learn more about @ctflyr his thirst to learn every day, sharing each moment with his life partner and making life an adventure🙂
Life is an adventure: Meet @ctflyr https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/life-is-an-adventure-meet-ctflyr/
Check out all the Member Spotlights here and follow the About Connect blog for future update: https://connect.mayoclinic.org/page/about-connect/
@richardlion unfortunately your representative in Lebanon dealing only in intercourse
diseases
@richardlion also I shall call your representative in Lebanon to seek advice
@colleenyoung Thanks dear for caring. Nothing has been done yet, still waiting for tumor board decision to find other solution like you suggested for stereotactic radiotherapy before operation. Thanks again
@richardlion, if you would like to seek a second opinion at Mayo Clinic, you can submit a request here: https://mayocl.in/1mtmR63
How are you doing? Will you have surgery?
@ofcourseitis, welcome. Have you been diagnosed with Kaposi's sarcoma? How are you doing?
@stacerph Hello.....while your Son's situation is daunting, and at times overwhelming for you, him and your Family, there are many "success" stories out there, even under the most dire circumstances. As you and your Son may know, or will learn, statistics are not "one size fits all". Each person and their illness is unique and will have unique results. Rely on the Care Team assembled to help your Son, but don't be afraid to question or request clarification for any guidance you receive that raises doubts or uncertainty. BIGGEST HUGS to you and your Son on his care journey ❤️