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CIC::DUX4 clinical trial

Sarcoma | Last Active: Sep 5 1:37pm | Replies (6)

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Profile picture for quichewithmayo (Lorraine) @quichewithmayo

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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Replies to "Hi-so sorry to hear about your son's diagnosis. I can only offer hope. I was diagnosed..."

@quichewithmayo ...were you able to get coverage for the pembro course from Medicare since it was "off label"? Or did you self-pay?