Introduction & Request for Advice
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Dear Carol,
Mixed feelings- I’m also very glad you’re here but of course we wish we met you under different circumstances.
I’m very happy to hear you are getting a second opinion. Unless you are at a center with a “tumor team” who are familiar with CC, they may not look at all options beyond the first line GEM/CIS.
I think it is a very good idea when you go to Mayo (or even with current ONC) to ask about clinical trials. If you haven’t done so already, I’d also ask about having the genetic testing done to see if there are mutations that might indicate a treatment course.
We wish you the best and please keep us up to date on how you are doing.
Take care,
CatherineDear Carol, welcome to our remarkable family and the best place to be for CC support. It is great that you are going for a second opinion as we highly suggest that and may I ask which Mayo you are going to visit? You want to be treated at the most experienced hospitals with the most experienced “teams” for this CC.
Until more members see the Board today, you can always use our “search” engine at the top of the page. Just type in a word and many posts will appear on that subject.
Please do not apologize for duplicate questions, that is the name of this game and how we all learn! Below is a site you may find helpful and I truly wish you the very best.http://cholangiocarcinoma.org/newly-dx/
This is my first post, though I’m not newly diagnosed. I’m glad you’re here!
After diagnosis of intrahepatic CC in September 2014 — in both lobes of my liver, not a candidate for surgery or radiation I was told — I was on gemcitabine until mid-August (first with cisplatin then with capecitabine). I did great — lots of tumor shrinkage, pain decreased, labs good, side effects not too bad. But my August CT showed the tumors growing again and now there are a few small mets in my lungs.
My oncologist is looking into next treatment options, as am I. I am soon going to Mayo Clinic for a consult.
Last September, it was an easy decision to go with gemcitabine; that seemed to be the consensus among the experts I checked with at the time. Now it’s not so clear what the “best” second line is. Apologies if this has been discussed already; there are so many posts that I am not sure where to start looking for answers to my question. Or if this is too wide open a question.
I’m also wondering if I should focus on a clinical trial at this time.
Anyone have any advice? Thanks!
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