Anyone have epithelioid sarcoma? (sarcoma epitelioide)

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?

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.

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?

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.

@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.

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.

My epitheliod sarcoma was treated with radiation. I was also put on tazmenostat for 3 years. They have pulled it from the market for potential secondary cancer. I would insist on being placed in it.
I would also go to Dr. Gounder at Sloan Memorial. He created the tazmenostat. I don’t believe they would do chemo there. Please get a second opinion. I am doing great because of the care at Sloan. Do not go to Dana Farber for this disease.
I wish you well.

Hello and good morning. Thank you for the update regarding ES.
Did you see good results with the tazmenostat? Did your ES matastisize?
May I ask what your protocol is today? Thank you in advance for your input.

My son’s epithilioid cancer started as a tumor in his back. They did radiation before surgery, but his three month scans showed it had metastasized to his lungs. I read that you shouldn’t have radiation with this type of cancer. Now they are giving him chemo and bone growth hormone shots. They said his type of cancer doesn’t typically respond to chemo. They told him that if this doesn’t work, a clinical trial would probably be next. I have been trying to find anyone experiencing this type of cancer.