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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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vssanf24 | @vssanf24 | Jul 29 5:07pm
In reply to @vssanf24 "My son who is 32 is being treated for this type of Sarcoma. He had surgery..." + (show)
Profile picture for vssanf24 @vssanf24

My son who is 32 is being treated for this type of Sarcoma. He had surgery in February to remove a tumor in his low back just under his kidney. His first three month scans showed that it had spread to his lungs. He just started chemotherapy, but the doctors say that this type doesn’t typically respond to chemotherapy. Are there any studies on other treatment options if the chemotherapy isn’t working?

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Thanks, I guess our next step may be to try and get him to the Mayo Clinic, I’m just worried that as fast as it metastasized to his lungs, that there may not be much time.

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moejoe67 | @moejoe67 | Jul 30 8:49am
In reply to @vssanf24 "My son who is 32 is being treated for this type of Sarcoma. He had surgery..." + (show)
Profile picture for vssanf24 @vssanf24

My son who is 32 is being treated for this type of Sarcoma. He had surgery in February to remove a tumor in his low back just under his kidney. His first three month scans showed that it had spread to his lungs. He just started chemotherapy, but the doctors say that this type doesn’t typically respond to chemotherapy. Are there any studies on other treatment options if the chemotherapy isn’t working?

Jump to this post

Yes on ES. 10 Radition on tumor worked well.
On my 3 cycle of Gemsidibine and Doctaxacle - old school chemo, not sure if it's working will get PET scan on 8/17.
How are you doing?

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vssanf24 | @vssanf24 | Jul 30 10:38am
In reply to @vssanf24 "My son who is 32 is being treated for this type of Sarcoma. He had surgery..." + (show)
Profile picture for vssanf24 @vssanf24

My son who is 32 is being treated for this type of Sarcoma. He had surgery in February to remove a tumor in his low back just under his kidney. His first three month scans showed that it had spread to his lungs. He just started chemotherapy, but the doctors say that this type doesn’t typically respond to chemotherapy. Are there any studies on other treatment options if the chemotherapy isn’t working?

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That is what my son is on too. His scans should be late August.

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moejoe67 | @moejoe67 | Aug 1 6:52am
In reply to @vssanf24 "My son who is 32 is being treated for this type of Sarcoma. He had surgery..." + (show)
Profile picture for vssanf24 @vssanf24

My son who is 32 is being treated for this type of Sarcoma. He had surgery in February to remove a tumor in his low back just under his kidney. His first three month scans showed that it had spread to his lungs. He just started chemotherapy, but the doctors say that this type doesn’t typically respond to chemotherapy. Are there any studies on other treatment options if the chemotherapy isn’t working?

Jump to this post

Mine went to my lungs very fast too. The chemo seemed to slow it down quickly. No scan, just how I felt physically.

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vssanf24 | @vssanf24 | 5 hours ago

My son 32 also has Epithilioid Sarcoma. It started as a tumor in his back just under the kidney. It was removed
In February, but his three month scans showed it had metastasized to his lungs. He is currently doing chemotherapy, and has three more cycles left. He had scans again last week and it showed some improvement, but now he has something on his right hip. He will have to do an MRI to check it further.

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