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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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My doc recommended ebulinin chemo
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....
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.
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1 ReactionWhat type of sarcoma?
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.
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
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.
Of course. I'm 40.
As an aside, if you call the ENT department directly at 507.405.2935 and request an appointment with Dr. Eric Moore. Share your diagnosis because they really like unicorns with unique challenges. Best to you.
I am 70 years old and my major reconstruction surgery was October 24, 2016. I have all my functionality. Last year we discovered that the Chondrosarcoma returned on the other side. Dr. Moore removed it and I am still fully functional. Again, my guidance if you want quality of life you have to get a consult with Dr. Moore. If you want to discus send me a private message with your cell and I will call you.