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CIC::DUX4 clinical trial

Posted by jake2011 @jake2011, Aug 2 10:12am

Hello,

Our son, 15, had a lump on his leg. It was about the size of a baseball, near his knee. It was surgically remove and sent to pathology. The testing came back as a malignant sarcoma and further testing identified it as CIC::DUX4. The tumor did not have any positive margins. He had CT and PET scans, showing metastatic disease in both lungs. He has about 4 or 5 nodules at the bottom of each lung. The nearby oncologist could treat with standard Ewings protocol, but recommended enrollment in a clinical trial for this cancer type.

He completed the second round and has a followup PET scan in about a week. Is anyone else enrolled in a clinical trial? Can you share your experiences? Any recovery stories?

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quichewithmayo | @quichewithmayo | Aug 5 1:40pm

Hi-so sorry to hear about your son's diagnosis. I can only offer hope. I was diagnosed with a stage 3b Undifferentiated Pleomorphic Sarcoma. (Radiation induced from a previous cancer treatment in 2005.) At one point the radiologist, oncologist, and surgeon thought that the 5 masses in my lungs (3 in the R, 2 in the L) were metastases, making it a Stage 4 cancer. I was told about 11 months to live. I'm at 1-1/2 years. The lung nodules, one by one, disappeared. Were they cancer, or something else? No one will ever know. But on Monday, Aug 03, 2026 I had MRI and CT scans and everthing is still clear. My simple advice: Stay positive, yet realistic. Eat healthy. Live life.
If you don't mind, I will keep your son and family in my prayers.
BTW-I go to UCSF. I had a 1-year (3-week interval) off-label treatment with pembromizulab. No other drugs.

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vssanf24 | @vssanf24 | 5 days ago

Thanks for your input. I hope his will disappear with the chemo. I’m glad they were successful in getting rid of your tumors. When they did his scans three months after surgery, he had 10 tumors in his lungs. The biggest issue with his type of sarcoma, is that it’s very rare and very aggressive.I haven’t heard from anyone else that has his type.

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