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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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I am undergoing dendritic cell therapy at Immunocine in Cancun for my metastasized solitary fibrous tumor. I was told incurable but this place is amazing. Had two vaccinations to date and feel great
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2 ReactionsAssalamualaikum to all who reading this comment I want to share my store
Iam Amreen from India hyderabad
I was diagnose with phyllode tumor
My age is 28
Since last year I was suffering from phyllode tumor of breast
In India hyderabad one of the hospital which name was mnj cancer intuition in this hospital my surgery was done the doctors removed my complete breast.
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2 ReactionsThank you you’re the first person that I’ve heard that has something similar and I loved the positive note. Thank you for your encouraging words ❤️🩹🙏
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2 ReactionsI, too chose radiation first for my Myxofibrosarcoma stage 2b in my thigh, then surgery after 4 weeks of recovery, mostly for my skin but I also had fatigue, from radiation. My surgery was this March with clear margins. Looks like you have a treatment plan, that is the most important first step. Best of luck to you.
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3 ReactionsIt sounds as though you will have a very positive outcome! I too had thigh surgery and it went well. Best of luck!
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3 ReactionsI was diagnosed in September with Sarcoma T3 N0 in my thigh. I thought I had a “Frozen ITBand” from too much physical activity, a sports injury, and within a month had a mass on the thigh the pain increased, so I was relieved to find out via needle biopsy of the diagnosis. I chose to start with Radiation Therapy to shrink the mass and then after approximately three weeks of rust and recovery, I will go through orthopedic oncology surgery to have the remaining mass removed. Things look positive for keeping my leg and I want to be educated on how to proceed.
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4 Reactionsdiagnosed with soft tissue sarcoma and had successful surgery in thigh
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5 ReactionsIvosidenib requires patient to have the mutation of the IDH1 gene. Success for leukaemia and bile duct. Cancer. It did not work for me sadly. Chondrosarcoma pretty much everywhere.
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2 ReactionsMay I ask what trial drug are you trying ? The doctors are suggesting Ivosidenib , since his is not operable for a Chondrosacroma of the skull .
Hi
Just wanted to see how you’re feeling ? My husband has a chondrosacroma in the skull is non - resectable . Have they mentioned the medicine called Ivosidenib . Just wondering…. Take care 🙏