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Newly diagnosed

Discussion Board Forums Introductions! Newly diagnosed

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    Dear Katherine, welcome to our remarkable family and the best place to be for CC support. Dr. Schwartz is one of our best so you are in good hands. With that in mind though please do keep an open mind for 2nd and 3rd opinions as different ONCS can see different things. We have come a long way in the last few years so we always try to hang in and hang on as who knows just what is right around the corner. BTW when any Doctor says he can do no more it is then time to find one who will. This is a rare cancer but there are still many ONCs out there ready and willing to fight. All the right things are being done for you and you are lucky to be told a resection is possible. Below is a site you may find helpful and please do keep us informed on your progress. We expect good thing for you!


    Starting in June, 2016 I began experiencing upper right sided abdominal pain. I have had ulcerative colitis for seven years and a trip to my GI ultimately led to my intrahepatic cholangiocarcinoma diagnosis in Sept. (following an ultrasound (august) to rule out gallstones, an MRI after seeing a liver mass and a biopsy in sept). I know that having ulcerative colitis can increase your chances of having colon cancer but I never heard of CC, and was never diagnosed with primary sclerosing colangitis which I now know is the stepping stone between the two. The first time I had elevated liver enzymes after having colitis was this past june (high alk phos and GGT). My colitis was under control with 6mp. I didn’t have weight loss until the time I was diagnosed, and was never jaundiced. I was told that I have stage IVA cancer due to 10cm primary mass which is compressing my bile duct, a liver vein and a few “satellite” nodules also on the right side of my liver. My MD suspects lymph node involvement based on my CT done 3 weeks after my MRI. Thankfully the three surgical opinions that I have received all say that my tumor IS resectable which I am very happy about. I am currently receiving gem/cis chemotherapy at Memorial Sloan Kettering hospital in NYC with the hopes of shrinking the satellite tumors and to get anything else that is swimming around in my body before having another scan and then scheduling my surgery. My initial CA199 was 17000 (at the time of diagnosis) which went to 4500 on the first day of chemo to 5400 this past week (chemo number 3). I have been doing fairly well on the chemotherapy (I have my 4th session tomorrow) but had a low white blood count last week and have been having some phlebitis/soreness in my arms with the veins they are using. I am worried that I will have to have a port put in if my arms can’t handle the chemo anymore.. just one more thing to worry about. Thankfully since my diagnosis my weight has stabilized and my appetite has returned. I continue to work full time and can manage the fatigue with just getting more sleep at night. My oncologist said that my hair would thin with the gem/cis and not fall out but I ended up buying a wig just yesterday because it was coming out in heaps in my brush. I never thought at 36 I would have to be dealing with this. I try to keep as educated as possible about this disease but I also don’t like reading some of the social media posts about people who have gone through chemo and their tumors grew, or people who post that their doctors say there is nothing else that can be done and to consider hospice. I know that these are possibilities but I am hoping that this won’t be the case for me. Has anyone used Dr. Schwartz at Mt. Sinai hospital for their resections? He suggested a scan soon to see if the chemo is working, but the doctors/surgeon at sloan (yu/jarnagin) want to wait 2 months after chemo started (first session was 10/10). Anyone have a similar case as me thats been successful? Anything extra I should be doing/looking at?

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