Clinical trials
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Reach out to Talia Baker at University of Chicago. My brother was told by mayo clinic and Northwestern his was unresectable and Dr. Baker performed a 14hr surgery on him and was able to remove the tumor etc….
Im not sure if I have introduced myself before but I’m Caroline and diagnosed with unresectable ICC April 2019.
3-4 months of Gem/Cis reduced the main tumor a bit but caused problems with blood platelets so we had to stop.
I have the BRAF mutation so we moved to the Braf inhibitors Braftovi and Mektovi which reduced the main tumor and brought down my CA 19-9 significantly in just 4 months. That’s really good news. But the lymph nodes did not respond to the inhibitors and have kept me from having Y90 this week and thus a goal of surgery.
My surgery team has said there are too many lymph nodes to attack with radiation. We are doing a liquid biopsy to determine if the lymph nodes have a different mutation, possible tissue biopsy too. They are also introducing me to two new oncologists (MD Anderson and St Louis) for clinical trials. I’m really discouraged because we were making such progress on the inhibitors and surgery was within grasp.The clinical trials scare me. Chemo isn’t an option for me given what it does to my platelets but a systematic approach is needed right now, like right now, to get the lymph nodes under control. Does anyone have success stories on clinical trials? Thank you.
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