This is my first time posted on this discussion board. I am 48 years old and have been living with stage 4 unresectable cholangiocarcinoma in Phoenix, Arizona for almost 3 years now. I am also a volunteer patient advocate for the The Cholangiocarcinoma Foundation, the only Patient Advocacy organization for this disease in the U.S. I just returned from our annual conference in Salt Lake City where for three days, 480 clinicians, researchers, drug company representatives, patients, and caregivers, learned all about the newest research and treatments. I urge all of you who aren't aware of this organization to check it out at https://cholangiocarcinoma.org. This site has a wealth of knowledge---you can read patient stories, watch all the presentations from the prior years' conferences (this year's will be posted in the next couple of weeks), and learn about clinical trials. The Mayo Clinic has a strong presence in this organization. This year, Lewis Roberts, a researcher at the Mayo in Rochester was the conference co-chair. My oncologist, Mitesh Borad(at Mayo Phoenix) gave a presentation as well and is one of the leading researchers in Cholangiocarcinoma in the country. The foundation has trained patient mentors, like myself throughout the country who can help point you to the right resources. You can call the foundation directly at (888) 936-6731 or feel free to post a question and I can answer any questions you may about how the organization can assist you. Have hope, everyone---there are many brilliant and caring minds and hearts working hard to find a cure as well as to bring to market new treatments that can improve our quality of life by keeping our disease stable. Since you are all being treated at one of the Mayo Clinic locations, you will understand the importance of Molecular profiling. If not, I urge you to view this 2 minute animated video just released by the foundation: https://www.youtube.com/watch?v=x8GV9TMXoDY When my tumor tissue was sent out by the Mayo for testing ---(molecular profiling/genomic profiling/next generation sequencing....all mean the same thing), it was found to have the FGFR2 mutation. I had previously had the standard gem/cis chemo regimen followed by a y90(local radioembolization to the liver). But the knowledge of my tumor's specific mutation led me to being eligible for a drug trial at the Mayo here in Phoenix which has kept my tumor stable for the last 18 months with very manageable side effects. While I know that eventually, the cancer will find a way to "outsmart" the drug, because I keep up to date with all the new research and trials, I already have a plan B and C lined up. I have my scans at the Mayo later this morning. Wish me luck! Sending you all hope and peace today. ---Andrea

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