Has anyone had treatment for CIC::DUX4 fusion sarcoma?

Posted by bmora @bmora, Nov 15 5:31pm

I am recently diagnosed with CIC sarcoma on my right clavicle. It started with a small bump on September 27, 2025. It was biopsy twice. Samples from the second biopsy were sent to the Mayo Clinic. I see the sarcoma specialist Monday November 17, 2025.
I did a little research and read this type of cancer has a poor prognosis.
Has anyone had CIC sarcoma? How was it treated?

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bmora | @bmora | Nov 21 7:28pm

I had a PICC line placement and first around of chemotherapy yesterday.
The chemotherapy drug cocktail
- Cyclophosphamide
- Doxorubicin
- Vincristine
The PICC line is the best way to deliver the chemotherapy drugs. It’s a 21 day treatment cycle with 6 cycles. I’ll have a treatment once every 21 days. I’ll know after the first cycle of treatment if the treatment is effective because I’ll notice the cancer tumor beginning to shrink. I’ll have a scan 6 weeks after the first treatment. Once the cancer tumor is shrunk enough and I’ve recovered from the chemotherapy, the surgeon, can remove the remaining cancer tumor. I may need additional chemotherapy or radiation after surgery.

Due to the chemotherapy side effects I have to increase my eating and hydration regiment for the best possible outcome. In addition, I must maintain physical activity as well.
The prognosis is not good if the treatment is not effective.

I’ve been down this road before however there is so much more at stake this time.

William Olsen, Volunteer Mentor | @hrhwilliam | Nov 24 9:38am

Hi @bmora I have been hesitant to comment on your situation as I had absolutely zero knowledge of CIC. After time I likely now have far less knowledge about this than you currently have. Rare, Genetics, etc, as you are well aware I am certain. On the plus side is the presentation of this cancer on the clavicle rather than in the more delicate areas of the head and neck.
We will certainly do our best to help you through treatments, hold your hand as it were, and pray for good results. Mayo Clinic appears at the top of the list for experience in CIC Sarcoma and I see they are already involved here, so that is good news. Keep us up to date. And as I am fond of quoting Churchill, "Courage."