Providing hope to cholangiocarcinoma patients by raising and investing in breakthrough research to prevent and cure cholangiocarcinoma, and providing support as they navigate their journey through mentoring, advocacy, love and prayer.
GIVING A FACE TO CHOLANGIOCARCINOMA
I was diagnosed with Cholangiocarcinoma (Bile Duct Cancer) last year... I underwent a Liver Resection and had 5" x 8" of my liver removed and then six months of Adjuvant Chemotherapy.
Cholangiocarcinoma is also known as Bile Duct Cancer. According to the Bili Project "Hepatobiliary Cancers are the sixth leading cause of cancer death in the USA, and the third leading cause of cancer death worldwide, yet somehow they have managed to keep a low profile as compared to other cancers until now. These cancers are a huge cause for concern as they are difficult to diagnose, difficult to treat and grossly underfunded with research. Our goal is to increase awareness, decrease incidence, and improve patient outcomes."
This cancer is on the rise in the USA and increased numbers are projected in the coming years.
February was Bile Duct Cancer Month... did you hear anything about it? Nope... neither did I! I sent out boxes of T-shirts, beads, balloons, suckers, and more to the major talk shows, and over 150 letters to major and local news stations... crickets... not one mention of this incredibly dangerous and aggressive disease. I have to get the word out. Why? Because this disease was once one found in mostly men over 65 and is now found in men and women ages 21 and up! Early diagnosis is key. Treatment is tough but we are tougher. We are a tight-knit family brought together on Facebook by this devastating cancer. We send each other packages, cards of hope, and text and call each other often. We celebrate when one of us gets great results on scans and we cry with fellow warriors when they get progression on their scans and then we support them and encourage them to fight! Many of us travel long distances to see experts specializing in the cancer. Statistics for survival rival that of Pancreatic cancer, some say worse. A friend told me it will take someone famous to get Common Bile Duct Cancer for anyone to pay attention. I sincerely don't want anyone getting this disease. This has been the worst year of my life.
To help spread awareness, we are trying to get the Philadelphia Eagles to Go Green For Cholangiocarcinoma at a home game in October 2019. To get their attention we have been in contact with the Eagles and have started a petition on change.org. To sign our petition, please visit bit.ly/EGGFC. You can learn more about cholangiocarcinoma at www.thebileproject.org, www.cholangiocarcinomafoundation.org and www.crainescancercure.org.
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