How did you find this site?
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Our inquisitive nephew researched (Googled) it after Jim passed as he wanted to know more about the terrible cancer that so swiftly took his uncle. Found this site for me and I have been here ever since.
Must also mention that when I talked last with my Mayo oncologist, I was telling him about my theory of H. Pylori being a significant factor in my getting ICC and in the process, I mentioned the Mayo Registry and CC.org. He said that another patient had told him about CC.org also…but then wasn’t sure…maybe it was I who had told him.
I sent him a link. Also, I was very disturbed when a cancer nutritionist at my new chemo center was negative about CC.org when I mentioned it to her (was going to tell her about the nutrition section). She was warning me about finding information on “the Web.” I can’t remember right now what I told her, but I think it was something about CC.org foundation funding studies and meetings for oncologists. I haven’t seen her since, but want to copy off something to take in to be given to her so she can see just what CC.org foundation really is….and that not EVERYthing on the web is bogus information. Sigh.
Found this site by using google searches….looking for the “positive” news…and then just anything I could gobble up for information.
I confess to google. As soon as the first doc said the words, cholangiocarcinoma and cancer in the came sentence. I lurked for a long time before I joined. Of course, I spent a long period of time looking for the good news about it on the internet….you know….what the cure was. We all know what I found. But once I got active on this site, I learned there are successes so it helped me a lot.
KrisV
Hi Duke,
I came here after hearing that my dad had CC. Came home from the hospital and hit google to start reading all about CC. Found this site and joined straight away. We are getting our message out there much more now due to everything that is happening and what everyone is doing, but yes, more can and will be done! Thanks Duke!
Best wishes,
Gavin
Hi Duke,
I came here after hearing that my dad had CC. Came home from the hospital and hit google to start reading all about CC. Found this site and joined straight away. We are getting our message out there much more now due to everything that is happening and what everyone is doing, but yes, more can and will be done! Thanks Duke!
Best wishes,
Gavin
Good Morning, Duke. Teddy had his Whipple in September 2005. I found the site when it opened in January 2006. I became ‘involved’ every time I went to an ONC or actually anyone in the Medical field I took a few brochures. When I have been in the hospital with the UC and the GIST Cancer I had, I spoke to people from Aides to Docs. Then about 2 years ago I contacted Mayo in Phoenix and MDA here had just opened. Took brochures and while they accepted the brochures I was always told there were not enough people to form support groups and we would just have to join in the support groups that already existed. I even gathered letters from Care Givers and Patients (35) and sent them to TV shows (Oprah, Dr. Oz, Ellen etc) heard from no one. I felt bad as I was on a mission and a girl doesn’t like to be ignored! Then last year I thought, we have a lot of believers in our members, of the beyond and I would put together a book of Members stories. That would get our name out, Memorialize loved ones and the money would go to CC.ORG. I was up to 10 people who said they would do it which would have been close to my goal of 15 however that is also when my UC took a turn for the worse. I did plan on starting again when I can get in to a remission. Other than that don’t know what else to do. Good question though.
Did your onc tell you about it?
Or, like me, did you find it in the middle or the night when you had way more questions than answers?
Marion:
If most of the answers are the latter, could the Foundation spread the word, at least to the main cancer centers, that these boards exist and provide assistance to new patients that they can’t offer?Duke
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