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Anyone have epithelioid sarcoma? (sarcoma epitelioide)
Sarcoma | Last Active: Aug 27 4:49pm | Replies (17)Comment receiving replies
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?
Replies to "My son who is 32 is being treated for this type of Sarcoma. He had surgery..."
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
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.
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.
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?
That is what my son is on too. His scans should be late August.
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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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.