Important: we need your help

Marion,

This website has been so helpful to me that if I write all the reasons it is helpful, it would easily take the entire time of the conference!

I feel it is so very important to have people who can relate to what you are going through. When I was diagnosed I was on a mission to find out if there were others my age with this cancer (I am 32). Without this website, I would have been lost. This is a place where you can be totally open and honest about anything you are experiencing. Through this website, I have received encouragement, advice, support and education, which I have found to be invaluable. I have also made some wonderful friends along the way and appreciate being able to share my experiences with them.

PS – My oncologist is going to be at this conference as well, Dr. Gina Vaccaro, from OHSU. If you see her, tell her she’s awesome!!

Thank you!

Susan Gaydosh

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I found this site a few days after my husband passed away from CC. It all happened so quickly I didn’t know much about it. This site has help me to understand what & why this happened to him and the support I have gotten from all of the lovely people here has gotten me through and given me the strength to go on and to be able to help, educate and support others whose lives have been affected by this relatively rare disease.

Darla Kondreck

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I was diagnosed with cholangiocarcinoma in 2008. I was terrified when I read the statistics about recurrence and survival rates. The only thing that kept me from total panic were the people on this website. In January 2009, I had a liver resection. Recovering from this surgery took many months and I felt isolated and lonely. Participation on the patient discussion board helped me deal the emotional and physical task of recovery. Becoming a member of the patient discussion board has also given me the opportunity to help others by sharing my experiences. The Cholangiocarcinoma Foundation has been a tremendous source of information, inspiration and support.

Betsy Kubbins

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This website is probably the reason I’m able to be writing this post today. I was diagnosed with CC in October of 2009…..as many have said the statistics are depressing to say the least…I had a first opinion from a very reputable cancer center in NYC their prognosis was not very optimistic they deemed me inoperable….that is when I discovered this site and received a response from another member whos dear mother had been diagnosed with CC…I wrote my introduction explained my situation and my desire to get a second opinion…I received many responses of encouragement and then there was the one I received on Christmas Eve. His name is Marc and he is now my angel…he urged me through e-mails to seek a second opinion with Dr. Myron Schwartz at Mt Sinai…that was 2 years ago. I was able to have a resection and have had clean scans and bloodwork since. To say the least this website is a God send..I think for me to have people who go through the same things I do is so comforting I know I will never be alone. This website is full of compassionate, courageous and I believe some pretty smart cookies!

Nancy
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When I first heard that I had Cholangiocarcinoma my first thought was – what the heck is that? Then the doctor told me that it is very rare and mostly deadly, that the statistics are non-existent and the prognosis is very bad. So, being the technology addict that I am, I went to the internet and found so little about it and what little I found was so depressing.

Then I found the cholangiocarcinoma site and things changed immediately. I remember my first post. I thought that nobody would have gone thru what I was going thru but quickly realized that I was not alone. I was NOT ALONE. That was so powerful. The fact that people are so willing to share their experiences, their hopes, their dreams, their lives, and their support was humbling to me. I continue to rely on the support and love I feel from this site everyday. I have been able to pay it forward by reaching out to others on this site as well. I’ve made lifelong friends who I may never meet but who help me in ways that no one else can.

Thank goodness for this site.

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I did not know where to turn for support when my 25 year old daughter was diagnosed with Cholangiocarcinoma. I had never heard of this type of cancer and then read how rare it is on the internet. When I first found this site, I could only take it a little at a time. This cancer is so devastating and it seems like I was reading about someone dying every day. I slowly came around and found that there are some success stories as well as some of the most brave people I have ever known. This site helps me so much now. I can offer support, advice, and comfort to someone who is in my shoes. I also receive more support than I ever could imagine. It feels like I have a large extended family that knows exactly what I am going through. I feel so much gratitude and love for all the patients, caregivers, and loved ones that have been touched by this horrible disease. They will all be in my heart forever.

-Pamela Kunklier

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