Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

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

This is a very promising new first line trial. Glad you are on it. Who is your doctor here in AZ? I've been on a clinical trail here @ Mayo in AZ (Pemigratinib-a gene inhibitor drug that targets the FGFR2 mutation) and on it I've have stable disease with a high quality of life for 18 months now. See my post earlier this morning about all the available resources at the Cholangiocarcinoma Foundation. Happy to connect with you locally---I've been through the gem/cis regimen(back in 4/18) and come out the other side so happy to offer you some hopeful words if you need them. ---Andrea

@afrancesca
Thank you for the information . I was diagnoised with CC in 3-2017 i under wnt the chemoradiation brachey theraapy to have a liver transplant. I was transplanted sept 2018. I have found out by reading my record that my explant tested positve or active adenocarcinoma resedue. Positive for perinuerl invasion. When i asked my Dr about what was going on they want to start me on chemotherapy / antirejection. Now that i have had the tranplant are these tratments a option for me. I had volunter for several studys . But nothing was told to me about the results. Thank ou fr your time
God Bless

@afrancesca
Thank you for the information . I was diagnoised with CC in 3-2017 i under wnt the chemoradiation brachey theraapy to have a liver transplant. I was transplanted sept 2018. I have found out by reading my record that my explant tested positve or active adenocarcinoma resedue. Positive for perinuerl invasion. When i asked my Dr about what was going on they want to start me on chemotherapy / antirejection. Now that i have had the tranplant are these tratments a option for me. I had volunter for several studys . But nothing was told to me about the results. Thank ou fr your time
God Bless

I’m unfamiliar with treatments available post ptransplant. However, There are many patients connected with the Cholangiocarcinoma Foundation who have undergone transplants. I strongly encourage you to call the Cholangiocarcinoma Foundation and request to be assigned to a patient mentor and assigned to someone in the cholangioconnect program. They will match you up with people who have also gone through a transplant and can help connect you to resources that are specific to post transplant treatments . At which Mayo location are you being treated? At the mayo clinic here in Phoenix, you can request to see a social worker ( I recommend Elizabeth Matthews she is helpful and knowledgeable about how the Mayo works) To help you to re-open/repair communication between you and your healthcare team. If you are at another location, maybe this site’s monitor can make a recommendation for who the experienced social workers are at your location ? Furthermore, It is standard for many patients to get second opinions at 2 different major cancer centers at transition times in their treatment plans. While all the major centers have similar transplant protocols, different centers might offer different clinical trials/treatments for patients post-transplant. You are doing the right thing by staying on top of this now and searching for answers. I have recently just discovered this site and it is wonderful. However, this is such a specialized area even within colangiocarcinoma and again I urge you to contact the Foundation as they know all the transplant specialists and what is offered, including, of course, what is available at the different locations of the Mayo Clinic . I’ve learned that as a patient, it is my job to be my own advocate. Once you contact the foundation please let us know how it goes as maybe there will be others who come to the site who have the same questions.

@afrancesca
I am going to the Mayo in Rochester Minnesota
I also at university Transplant Center in San Antonio Tx for my local care.

Jerry-if you are interested in getting a second opinion in Texas, Dr. Miland Javle at MD Anderson in Houston is one of the best known oncologists in the country for treating Cholangiocarcinoma.

@afrancesca
I started with UHS in SAn Antonio. They sent my case to MD Anderson. I was declined. UHS is Governed by MD ANDERSON . They sent me to the Mayo Clinic.