My Nonprofit Reviews
Review for Cholangiocarcinoma Foundation, Herriman, UT, USA
I was diagnosed with Intrahepatic Cholangiocarcinoma in Sept 2015. My local Oncologist, Dr Deborah Lindquist, put me on the standard treatment of GemCis chemo...Gemcitabine and Cisplatin. I had been on that chemo for 16 months when I happened to come across an article in a magazine featuring The Cholangiocarcinoma Foundation and Melinda Bachini. The Foundation's annual conference was noted in the article and we excitedly attended our first one in January 2017. The combination of patients, caregivers, doctors, researchers and pharmaceutical attendees was amazing. We learned so much about this rare cancer, it's treatments, trials, etc., but we were touched the most by patients and caregivers that shared their personal stories or hope, triumph and loss. It was truly amazing and we've now attended three annual conferences in person before this year needing to go "virtual". Amazingly there were many more attendees online this year from all around the globe.
We returned home from our first conference so full of hope and ideas on how we might proceed, the "what if", when my treatment was no longer effective. We went over the conference and info with my Oncologist. She very willingly referred me to Mayo Phoenix, even though I was not within the protocol for surgery. We just wanted a Plan B before it was needed. At Mayo I was seen by a new Oncologist, had new scans which were reviewed by a Mayo surgeon, Dr Adyr Moss, who said he thought he "could get it outta there". And he did!
So within 4 months of attending our first CCF conference I had a successful resection, removing the right lobe of my liver, numerous lymph nodes and gallbladder with clear margins. I am thrilled to say that I am now 3 1/2 years NED (no evidence of disease). I credit so much of this to the Foundation for the information I obtained at the conference which I could then take home and apply to my situation.
The Cholangiocarcinoma Foundation, it's board, staff and volunteers are such an amazing group and deserve all the accolades that can be bestowed upon them. They are truly a blessing to all who come across their path.