Anyone have epithelioid sarcoma? (sarcoma epitelioide)

Posted by mariagonzb43 @mariagonzb43, Feb 18 3:21pm

Hello! My 9-year-old son has been diagnosed with epithelioid sarcoma in his right foot. I would like to know if there is anyone with this diagnosis and what type of treatment they are undergoing.

Thank you!
Maria

Hola! Mi hijo de 9 años ha sido diagnosticado con un sarcoma epitelioide en su pie derecho. Me gustaria saber si hay alguien con este diagnostico y que tipo de tratamiento está siguiendo.

Gracias!

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Interested in more discussions like this? Go to the Sarcoma Support Group.

Colleen Young, Connect Director | @colleenyoung | Feb 24 8:19pm

Welcome @mariagonzb43, I'm adding @daysiperu and @sharonlynn51 into this conversation too.

- Epithelioid sarcoma https://www.mayoclinic.org/diseases-conditions/epithelioid-sarcoma/diagnosis-treatment/drc-20577575

You must be so worried about your little boy. What treatment has been recommended for him? Will he have surgery?

mariagonzb43 | @mariagonzb43 | Mar 1 5:48pm

Hi Colleen, how are you?

Thanks for your words

The recommended treatment is chemotherapy, as he has two metastatic lesions in his leg. After that, since the primary tumor is located in the foot, surgery is considered complex. Therefore, they plan to perform an isolated limb perfusion technique to avoid amputation. At the same time, he will be taking an inhibitor called Tazemetostat, which is specifically indicated for epithelioid sarcoma.

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