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

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.

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."

Thank you 🙂

Hi @bmora, I moved your discussion to the Sarcoma support group here: https://connect.mayoclinic.org/group/sarcoma/

I did this so you can connect with members like @monicadinslage, who was also recently diagnosed with CIC sarcoma.

Bmora, how are you doing after your first chemo treatment? Staying hydrated?

Thank you for moving my discussion.

I feel weak and have no desire to do anything. My taste buds are shot.

@bmora

Hello, @bmora , can I ask how your chemotherapy is going so far? My little brother is diagnosed with CIC-DUX4 and started chemo a few days ago (same drug mix) so I'm wondering what to expect and what sort of support would be most helpful to him.

I hope you're doing well.

Praying for everyone with this sarcoma as it is so rare it appears no one has studied it. My son has CIC-DUX4 - stage 4. Does anyone here have any hospital or treatment recommendations. We're at MD Anderson Houston, but I'm not sure they have seen this version, only Ewing.

My husband was diagnosed with CIC-DUX4 stage 4 in November 2025. My understanding is that the standard treatment is the same as Ewing Sarcoma and that is what he did. He was treated at the Fred Hutch Cancer Clinic in Seattle. He underwent 14 total cycles of alternating IE/CDC every 21 days. At cycle 6 he underwent 25 days of radiation at the tumor site and at cycle 7 chemo was paused for the surgical removal of the tumor. He had negative margins and a complete pathological result. There were minor post-surgical complications which delayed the restart of chemo for 2 months. One month after the end of cycle 14 he had prophylactic whole lung radiation. He is now on his 18th month of surveillance. He had his most recent quarterly set of MRI and PET/CT scans in June. There is no indication of recurrence.

I hope this helps. We considered MD Anderson for treatment and I understand that they are an excellent facility. We chose Fred Hutch because of proximity to where we live and the ability to start treatment immediately.

@casey2026, you and your husband's experience is very helpful and gives hope. I'm confident that @bmora will appreciate reading about his treatment and the positive outcome.

As his caregiver, what is one tip that you would share with others on this journey or, in other words, what is one thing you wish you had known?