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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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@colleenyoung There is a wonderful support group for GIST patients. It's called LifeRaft. I recommend that those with Gist get with them. I have lms but before I got my biopsy results I thought it was GIST. Those folks literally held me together while i waited 21 days for my results. The folks I met there still check up on me.
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1 ReactionYour mom must have had an oncologist with the incident in 2023. This is the person to consult with. If not an active relationship, you need to find a sarcoma specialist ASAP at the sarcoma center. I don't think your mom has told you everything. She should have been getting MRI or CT scans every three months to get the best chance at survival. I don't intend to be harsh but sarcoma is never a one and done.
My mother has been suffering from dedifferentiated liposarcoma (retroperitoneal mass). He underwent surgery on June 2023 and again in 2026 recurrence occurred. But this time major Organs has been involved and doctor saying that chemotherapy is not effective in this type of cancer. Can anyone share who underwent through this type of cancer which medicines are effective?
@ziahlita, welcome. You may wish to connect with members living with GIST in these related discussions:
- Anyone been diagnosed with GIST Tumor in the stomach?https://connect.mayoclinic.org/discussion/gist-tumor/
- Anyone have experience with gastrointestinal stromal tumor (GIST)?https://connect.mayoclinic.org/discussion/gist-cancer/
Any updates on genetic testing or surgery date? How are you doing?
Mucho ánimo Daisy! Vamos para en frente!
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@mariagonzb43 también me gustaria si hay alguien que pueda compartir su experiencia con sarcoma epitelioide, aun no he conseguido contactar con nadie con este tipo de sarcoma raro.
Gracias
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@daysiperu Hola daisy, que tal? mi hijo fue diagnosticado con un sarcoma epitelioide, ha recibido 6 ciclos de quimio y vana realizarle un procedimiento que se llama PERFUSION DE MIEMBRO que tiene como objetivo evitar la amputación de su pierna. Al mismo tiempo ha sido recetado una terapia dirigida que se llama TAZEMETOSTAT que es un inhibidor especificamente para el sarcoma epitelioide. Ambos son tratamientos caros, pero aqui en Brasil es cubierto por el seguro medico
Espero que te haya ayudado.
Un saludo
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I was diagnosed on January 20, 2026 with GIST on the middle of my esophagus. My surgery is pending my CT Scans and genetics testing of the biopsy sample and my blood.
@ctflyr
Thank you very much. I will definitely look into the one in Santa Fe. That’s not too far from me. Thank you very much.
@debschmalbach
In reply to your "Outside Referrals " post......
Hi Debi......
Christus-St Vincent in Santa Fe has a new cancer center and they are in the Mayo network. They could work directly with your Dr at Mayo. If that's not helpful, try MD Anderson in Houston or Cedars-Sinai in Los Angeles. Also, try sarcomaalliance.org for other recommended sarcoma centers. Best wishes in getting the support you need!
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