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Anyone diagnosed with Epethilioid Sarcoma?

Posted by vssanf24 @vssanf24, Jul 15 2:21pm

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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dosimo4600 | @dosimo4600 | Jul 16 7:14pm

Hello, I have been cared for at Memorial Sloan Kettering in NYC. I would get a second opinion with Dr. Gounder.
There is also a cancer center in Texas. Your son needs to be seen by doctors who are studying this disease. Do not go to Dana Farber in Boston.
I am so sorry your son and family are going through this.

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vssanf24 | @vssanf24 | Jul 17 1:55pm
In reply to @dosimo4600 "Hello, I have been cared for at Memorial Sloan Kettering in NYC. I would get a..." + (show)
Profile picture for dosimo4600 @dosimo4600

Hello, I have been cared for at Memorial Sloan Kettering in NYC. I would get a second opinion with Dr. Gounder.
There is also a cancer center in Texas. Your son needs to be seen by doctors who are studying this disease. Do not go to Dana Farber in Boston.
I am so sorry your son and family are going through this.

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@dosimo4600
I was looking at Sloan Kettering yesterday. Are you dealing with this same type of cancer? Currently he is being treated through UC Health at Anshutz in Aurora, CO. His tumor was sent to John’s Hopkins for research. Texas would definitely be closer.

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dosimo4600 | @dosimo4600 | Jul 22 6:06am

Yes I was diagnosed with epitheliod sarcoma in 2020. It was found in my upper arm, then lower and finally the source was found in a finger. The finger was amputated. I was on tazmenostat for 3 years with no tumors but I wanted to fight. It has just been pulled because of secondary cancer risks.
Msk agreed to
let me take the meds. because they are open to fighting and not stuck in a rut of traditional sarcoma treatment. You have to keep looking until you are given the same prognosis by a number of centers.
I have sent people to MSK and they have received completely different treatment plans. MSK is one of the best cancer centers.
Few centers understand epitheliod sarcoma like they do. epitheliod sarcoma

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dosimo4600 | @dosimo4600 | Jul 22 6:09am

Sorry it posted by mistake, without review.
It is a rare and ruthless disease with about 150 cases in the US a year.
I am so sorry you are dealing with this.

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vssanf24 | @vssanf24 | Jul 29 5:07pm

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

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

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

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moejoe67 | @moejoe67 | Aug 1 6:52am

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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