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

Liver Cancer | Last Active: Apr 16 5:58pm | Replies (195)
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@mcarrel

I was diagnosed with intrahepatic cholangiocarcinoma in Dec18. Just started treatment @ Mayo in AZ last week of Std Treatment cis/gem in combination with clinical Trial CX-4945 not sure what effect treatment will have yet but very optimistic and hopeful. Experimental can be a big decision and is not for everyone. They have said it is unresectable but I have read many hopeful stories of a better outcome than initially diagnosed so I will fight and maybe I can help with the discovery of better treatment options for others.

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Replies to "I was diagnosed with intrahepatic cholangiocarcinoma in Dec18. Just started treatment @ Mayo in AZ last..."
lisamb | @lisamb | Feb 3, 2019

My husband was diagnosed in January 2017 with perihilar cholangiocarcinoma at Mayo Clinic in Rochester MN. He had a liver transplant in June 2018. He is doing great! Is a transplant an option?

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Andrea Parrella | @afrancesca | Feb 4, 2019

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

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