Discussion Board – Message from a Moderator

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Hi everyone,

It is with some sadness that I join the Cholangiocarcinoma Foundation in saying goodbye to the Discussion Board, which is being retired.  It has been an honor and a privilege over the past five years to serve as a discussion board moderator, and to interact and share stories with this amazing community.

Your many messages and postings will stay available as a searchable database for current and future patients and caregivers.  This database is especially rich in information and experiences regarding traditional treatments such as surgery, gemcitabine/cisplatin chemotherapy and diagnostic tools such as ERCP.

Today, gratefully, there are more and more options for patients.  Newer targeted treatments and immunotherapy are making cancer care more individualized.  With personalized medicine, however, it becomes harder for patients and caregivers to find others who are having similar experiences, especially for a rare cancer like cholangiocarcinoma.  This evolution is pushing our community to look for new and better ways to be sure patients and caregivers find the information they need and have opportunities to interact with others in similar situations.

The Cholangiocarcinoma Foundation remains committed to building these networks. Social media offers opportunities to continue the conversation.  The Cholangiocarcinoma Foundation website in its sections for newly diagnosed patients provides links to several active Facebook groups, and its advocates participate in these discussions.  The Foundation also offers mentoring resources and monthly support groups for patients and caregivers, to provide opportunities for us to learn from one another.  Please take a look at the wealth of resources on the Cholangiocarcinoma Foundation website if you have not visited it recently.

I just passed the seventh anniversary of my own diagnosis.  My understanding of this cancer was aided by what I have learned from all of you.  Thank you.  I will be continuing my work as a volunteer research advocate for the Cholangiocarcinoma Foundation and can be reached at the advocates’ mailbox Advocacy@Cholangiocarcinoma.org.

Take care, regards, Mary

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