Discussion Board Forums Introductions! Father recently diagnosed-confusing response to treatment

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    Hi W,

    Welcome to our community.  I hope you have found all of the resources for newly diagnosed patients on the Cholangiocarcinoma Foundation website.

    I am sorry to learn of your father’s diagnosis.  It sounds like the current chemo regimen has shown some success although the new nodules in the lungs are concerning.  As Hannah notes, some of our patients with bone metastases have been offered radiation therapy, which can reduce pain and/or keep the met from growing.

    Gemcitabine-cisplatin is the most typical first-line chemo.  Judging from what patients report on this board, xeloda as a second line option seems to be used when the patient has a tough time tolerating chemo, e.g., a very elderly patient.  It has the advantage of being in pill form.  Other second (or third) line chemos reported here for cholangiocarcinoma include the combos Folfiri and Folfox, which combine 5FU (5-fluorouracil, same chemo family as xeloda, but is infused rather than in pill form) and leucovorin with either irinotecan or oxaliplatin.  Leucovorin is also called folinic acid.  These chemo combos have more side effects than xeloda alone, but many patients find them tolerable.

    CA19-9 is looked at to track the course of the cancer, but it is not always reliable.  It seems good news that your father’s marker has come down, but scans will provide more precise information.

    Please let us know about your father’s results from his treatments.  I hope he is feeling well and has a good quality of life despite the cancer treatment.

    Regards, Mary


    Thank you, Hannah, for your supportive message. We are looking into testing for mutations, we are not in the US so trying to figure out the process. I will check with the oncologist about gemcitabine and capecitabine combination. I am trying to focus on the good news, and hoping that the door will be opened to more effective treatment options.


    Hi there W,

    Firstly, welcome to the board and I’m so sorry to hear of your father’s diagnosis. I’m like you only recently a ‘speaking’ member of the community after lurking for a number of months. Your father’s mixed response to the xeloda sounds really frustrating. Great news about the primary tumor shrinkage, but dang it about the new lung nodules. I am afraid I do not have any real answers to your main question, but I do have I guess a couple of questions and a… train of thought?

    Firstly, you say your dad was tested for micro-satellite instability. Very few CC patients are microsatellite unstable, but a lot more people have other kinds of mutations. Did he also get tested for a wider range of mutations?  If not, it is definitely worth doing and may open up some alternate treatment avenues.

    Secondly, have your doctors discussed non-chemo related options for the bone mets? I have read some (mostly here on these boards, if you run a search) about people using radiation therapies to zap bone metastases. Perhaps others could weigh in on this.

    Finally, it seems like the xeloda is at least partially effective, and thus maybe worth keeping on the table while adding something else to the mix. I know that in Japan (and maybe elsewhere?) gemcitabine and capecitabine (xeloda) is often used, rather than our usual gem-cis. I know the gem-cis didn’t work, but I wonder if your doctors would be open to exploring xeloda in combination with another chemo.

    Meanwhile, I know it seems tough to do, but try to take heart as much as you can in the good news that came out of your dad’s last tests. CA 19-9 coming down and primary tumor shrinkage are both great news, as is your dad’s feeling better and his normalizing liver function.

    Best wishes to you and your dad,



    Hello everyone,

    I have been following these forums, but have not posted. My father was diagnosed with stage 4 intraheptic cholangiocarcinoma with mestasis to bones and lungs and enlarged lymph nodes early November after a CT scan and liver biopsy in October. The medical team told us that the only option they can offer is palliative chemotherapy. He began gem/cis Nov 11, and after two full cycles (4 sessions), they did a repeat CT. His tumor marker (CA19-9) had gone up from 384 to about 500. The scan showed that the primary tumor was about the same size, but two of the bone lesions had grown more than 20% so doctor decided to switch him to xeloda. He was tested for micro-satellite instability but test came out negative. He completed 3 rounds of xeloda, and has tolerated it for the most part. A few weeks ago, his tumor marker had gone down to 168, which had us feeling optimistic. They did another CT scan on Sunday, and the scan showed that his primary liver tumor shrunk by about 2 cm (it was about 10 cm at diagnosis), bone lesions were stable, but there were some new (small) nodules on the lungs, although original nodules did not increase in size. His doctor is now exploring other options, she said if it wasn’t for the nodules they would consider him stable. This was surprising given that the CA19-9 had dropped substantially, and his liver enzymes are now mostly within normal values. Has anyone experienced anything like this? It has been difficult to wrap our heads around the scans, especially as he seems to be doing better physically, and we were encouraged by the shrinking of the primary tumor. Also, has anyone had success with 3rd line treatments or any alternative or complementary therapies?



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