New to site – 2.5 years living with Cholangiocarcinoma

Discussion Board Forums Introductions! New to site – 2.5 years living with Cholangiocarcinoma

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    Hi Annie,

    Welcome to the site! And as the others have said to you, yep I do the cleaning round here so consider your other post cleaned and erased! Don’t worry about the duplicates, it happens to us all so I have to put the cleaning gloves on and tidy things up as it were.

    Glad that you have joined in with us all but sorry that you had to find us all as well. Looking forward to hearing more from you and please keep on coming back to keep us updated on things. We don’t bite!

    My best to you,



    Hi Annie…..and welcome. I assume you are looking for accrual in the NIH trial: Immunotherapy Using Tumor Infiltrating Lymphocytes for Patients With Metastatic Cancer
    Our Melinda had spectacular results and I wish the same for you. When will you restart gem/cis?


    Dear Annie, welcome to our remarkable family and the best place to be for CC support. Don’t worry about multiple postings as our Gavin loves to erase! I am really happy that you are returning to the USA as I think you will find we are more advanced in treating CC therefore giving you more options. Hang in, hang on and please keep us posted on your progress as we truly care.


    Welcome Annie – I’m sorry to have you in “the club” but so glad you’ve introduced yourself and shared your story. This forum and the foundation are a great source of information and support, as you said. I look forward to meeting you in person at the next conference! -Matt


    Sorry!! I didn’t mean to post it so many times!! Could you please correct it for me? The page wouldn’t load, sorry!! Annie


    My name is Annie, and I am a cholangiocarcinoma patient (inoperable, multi-focal, intrahepatic). I am American, although I have been living in Dublin Ireland for 9 years. We will be moving back to the US in July. I am currently a candidate for an NCI immunotherapy trial in Wash DC starting in June, pending its approval.

    I am 51, married, and have a 7 year old son. I was diagnosed (first as hepatocellular carcinoma) in November of 2013. It was later diagnosed as cholangiocarcinoma, but likely is mixed. I have undergone surgery (to find it was inoperable), TACE, Sorafenib, Gemcitabine/Cisplatin (partial response), Gemcitabine alone (9 months maintenance), and most recently Folfox (no response, 10% growth in 2 tumours). I have been off chemo since February to give my body a break and my scan this week showed continued growth of my tumors, but thankfully still confined to the liver.

    The plan is to have a few doses of chemo prior to the immunotherapy trial to hopefully manage the cancer until the trial. I will start back on chemo next week (gem/cis).

    Despite my advanced disease, I am virtually asymptomatic, only fatigue and mild discomfort. I am otherwise fit and healthy.

    I wish I had made it to the conference!! Maybe next year!! This site has been an amazing source of information and support for me. Thank you so much!!

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