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.

Terriebikes | @bicycle3 | Feb 4, 2023

In reply to @barman "Alright.. but.. just a doubt- don't they prescribe doxorubicin and ifosfamide for such stuff?" + (show)

doxo did not help

pb82 | @barman | Feb 4, 2023

In reply to @bicycle3 "I am driving to Manhattan on Sunday for a consultation at Sloan Kettering Monday morning. I..." + (show)

Alright.. but.. just a doubt- don't they prescribe doxorubicin and ifosfamide for such stuff?

gemmalt | @gemmalt | Feb 3, 2023

In reply to @bicycle3 "My doc recommended ebulinin chemo" + (show)

Many thanks I’ll look into it

Terriebikes | @bicycle3 | Feb 2, 2023

In reply to @gemmalt "Hi My Father has recently been diagnosed with undifferentiated pleomorphic sarcoma. He has a skin tag..." + (show)

My doc recommended ebulinin chemo

gemmalt | @gemmalt | Feb 1, 2023

Hi
My Father has recently been diagnosed with undifferentiated pleomorphic sarcoma. He has a skin tag removed from his back Aug 2021 which was diagnosed (incorrectly) as atypical fibroxanthoma (benign) - no follow up needed. 14 months later started coughing up a little blood - biopsy and CT scans later showed multiple metastases in both lungs which were confirmed as sarcoma. Any new treatments available in the USA for this, it is non operable so looks like we only have the Trabectedin chemo option....

Terriebikes | @bicycle3 | Jan 30, 2023

In reply to @barman "So and update in my case.. they recently found out that it was a high grade,..." + (show)

I am driving to Manhattan on Sunday for a consultation at Sloan Kettering Monday morning. I will let you know what they say. The chemo here was not working and the new chemo sounded difficult but if I have to do that I will come back and do that it's called ebulinen.

Terriebikes | @bicycle3 | Jan 29, 2023

In reply to @jeffk "I am 70 years old and my major reconstruction surgery was October 24, 2016. I have..." + (show)

What type of sarcoma?

Colleen Young, Connect Director | @colleenyoung | Jan 29, 2023

In reply to @emattson "Jeff would love to speak with you directly. Private message me and let me know when..." + (show)

Welcome @emattson. Please note that I removed your personal phone number from your message. Mayo Clinic Connect is a public forum. It is better to use the secure private message function to exchange personal contact information. As a new member, you will be able to send private messages in a few days. You can receive private messages any time.

emattson | @emattson | Jan 29, 2023

In reply to @jeffk "I am 70 years old and my major reconstruction surgery was October 24, 2016. I have..." + (show)

Jeff would love to speak with you directly. Private message me and let me know when would be a convenient time for a call. Many thanks Eric

pb82 | @barman | Jan 29, 2023

In reply to @barman "Greetings. I have been recently diagonised with dedifferentiated liposarcoma (which was found out through biopsy after..." + (show)

So and update in my case.. they recently found out that it was a high grade, grade 3 tumor of dedifferentiated liposarcoma. The surrounding mass was found out to be grade 2.