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  • bglass

    Rev. Wayne,

    I agree that chemo is an opaque topic to wrap one’s head around.

    Cisplatin is one of the chemos in the “platin” family – others are carboplatin and oxaliplatin.

    Capecitabine is from a different family – it is the pill form of 5FU.

    Gemcitabine is a third chemo.  As another board member, Darragh, recently mentioned, a new chemo derived from gemcitabine – Acelarin – is being tested so in the future gem may have a “family” as well.

    These chemos are all used for cholangiocarcinoma and have been tested in clinical trials both singly and in combinations.  Gem-cis became considered a standard of care as a result of a large clinical trial study (ABC-02) that showed it to be more effective for CCA than gem alone.

    Gem-cap  is used in an adjuvant (post-surgery) protocol also including radiation that comes from a study called SWOG S0809 if anyone wants to Google it.  In the study, the authors note that their design predates the British study on gem-cis.  Capecitabine is used with radiation because it appears to sensitize cancer cells for better impact by the radiation.  Gem has been used in this way as well, but it is more complicated since it requires infusion which is difficult to manage given radiation is every day.

    Gem-cap has been looked at in a bunch of small studies and appears to produce similar results to gem-cis.  What is missing is a large, randomized study.

    Regards, Mary


    In reply to: My 42 year-old husband


    Four days ago, my husband finished his scheduled 5 weeks of IMRT with 5FU Mon-Fri (I thought it was 6 weeks, but 1 week was just planning). His PET CT from before he started radiation still showed NED, and all inflammation from the PET CT in February was gone. The docs were correct when they warned us this last part would be the toughest on Patrick. He has been extremely fatigued and nauseous since the third week of radiation. He lost 8 pounds in 10 days. He goes in twice a week for IV anti-nausea meds and fluids. They will check him for 2 weeks to see if those need to continue. He starts back to work full time in 2 weeks as well.

    I was initially upset that his oncologist would not say he is in remission. I looked up the definition, and it seems that if you are NED with no further treatments planned, then you are in remission. I know it is just a label, but I WANT THAT LABEL!!! I tell everyone that he is in remission because it is a word they understand. They will not take his port out until he has had 2 clear scans, which makes sense. The first scan will be at the end of Sept and the second will be at the end of November if the Sept scan is clear. The chemo nurses told me that his doc is really conservative with the good labels, but I think hope is good!!! Telling us he is in remission doesn’t make us ignorant of the statistics regarding recurrence, but it allows us to celebrate this awesome milestone.

    We are celebrating as much as we can while Patrick is feeling so horrible. The kids and I surprised him by decorating the car while he was in his last radiation. We wrote “We Beat Cancer” on the back and “Way to go Dad” and “Awesome Job!” on the side windows. Then, we stopped at Dairy Queen on the way home and (surprise!!) it was filled with our friends. I had warned them that I might have to cancel at the last minute if he was not up for stopping, but he said he could eat an ice cream cone. He ended up eating lunch there! The final surprise was a “He Did It!” banner that we hung on the front porch when he got home. We are sooooo happy, but we are anxious for him to feel better. We feel so blessed to reach this milestone in our journey!



    In reply to: First time posting


    Hello to everyone. It’s been awhile since posting an update, partly because it’s been a crazy hectic month. My husband has been on the Folfox/5FU since beginning of May. Had a scan at end of June which showed no shrinkage of tumors. We are continuing with the same chemo regimen through August with another scan after that. He has lost 22 more pounds since May. We are learning more about cancer cachexia which is the main reason for his weight loss, not only weight loss but almost all his muscle mass. Extreme fatigue is also a constant. He sleeps a lot and eats very little. From what I’ve been reading about cachexia it does not sound very encouraging. Any helpful hints or info would be greatly appreciated. We’re ready for the hard facts, I’m thinking this is the beginning of the end stages, especially since this is the first time that our oncologist seemed very somber. We need to know reality since we have much business to attend to. We’re trying to keep a positive outlook but………it’s hard.



    In reply to: My 42 year-old husband


    More great news! His MRI from a couple weeks ago was also clear. In fact, it looked even better than the MRI from April, with no intrahepatic dilation at all. He is still NED. He finished his 7th round of gemzar/cisplatin on Thursday and is scheduled to start 6 weeks of IMRT radiation and 5FU chemo on July 17th. His doc said that this is like a climb up Mt. Everest, we are almost done, but this last part is the hardest.

    He handled the gem/cis pretty well, especially after they started giving him additional IV anti-nausea meds and fluids on the 4th day after each infusion starting on the 5th round. That really helped keep the nausea away and his appetite up. He is back to his pre-surgery weight.

    We have had a number of people ask why we are continuing with radiation if he is NED. Four different doctors (in addition to the hospital’s liver board) all recommended we do chemo AND radiation if he could tolerate it, so this has been the plan ever since he came out of surgery without clear margins and one positive regional lymph node. It actually is a tough call, because he feels so good now and it is tempting to just get on with our lives and enjoy the rest of summer without being hooked up to a chemo pump and popping in for radiation Mon-Fri for 6 weeks. We feel comfortable with this decision for us though. He will finish radiation 1 week before he has to go back to work full-time. He is a professor.



    Welcome to our group. I’m sorry that you had reason to find us, but I am glad you did. We can be a good source of information and support for you and your husband.

    I am sorry that your husband’s CC has recurred. Hopefully, it has been detected early and can be effectively treated with the 5FU. Is John Hopkins still involved in the follow up tests and 5FU? I hope so, as they have considerable expertise with this disease.

    I am not familiar with the VA procedures, but I know we have members who are. Hopefully, they will chime in soon.

    Again, welcome to our board.



    Good morning,

    This is my first post, so if it’s on the incorrect board, please advise.

    A little background: My husband was diagnosed with ICC in Oct. 2015. Liver resection of 11 x 12 cm tumor at Johns Hopkins Nov. 2015 (positive margins, lymph node and blood vessel involvement), followed by gemcis and radiation. Monitoring scans clear until latest scan May 2017 shows recurrence with multiple lesions up to 1.5 cm. 5FU chemo in progress.

    While hubby was undergoing treatment, we received info in the mail about water contamination at the Marine base Camp LeJeune during the time my husband was training there in the early 80s. He had a physical at the local VA several months ago and we are awaiting word on whether his cancer is part of the approved list. Liver cancer is on the list, but CC is not specifically listed.

    Finally, my questions: Is ICC categorized in the liver cancer family? Has anyone else been approved with CC in the LeJeune group? What was the outcome? For those who receive VA services, what does acceptance in the group actually provide my husband?

    Thank you for reading this long post! I appreciate any comments.


    In reply to: First time posting



    Your wife’s situation is almost identical to my husbands. He was put on the same chemo regimen (oxaliplatin, 5fu, and home pump for 47 hours) , after the gemzar and cisplatin failed. His tumors also grew during that time. He started this new regimen on Tuesday, May 2nd. Chemo pump was disconnected on Thursday. We weren’t told the exact trial that the oncologist was thinking of. My husbands tissue was not tested yet for clinical trials. I can see that we need to be more assertive in our questions and demand answers and action. We’re finding out that we need to be our own advocates, and this site has been so helpful. Thank you for sharing your wife’s story. I hope the response to this new chemo regimen will be successful for her and my husband. We’ll remain hopeful and positive! Please keep us posted. I’ll be mentioning the clinical trial again to our oncologist. Thank you!


    In reply to: First time posting



    My wife is in a similar position as your husband. The Cisplatin/Gemzar first line treatment did not work and her tumors grew while she was on the treatment. The doctor has started her on the FOLFOX, which is the oxaliplatin and 5FU regimen with the 46-hour pump that you take home. She had her first treatment of the FOLFOX a couple days ago and was unhooked from the pump today.

    She had her tumor tested and was found to have the IDH1 mutation, so she qualifies for a trial of a new drug, AG-120, which is being tested on people who have failed to maintain a response on the Cis/Gem chemo. She wasn’t required to get the second chemo regimen before the clinical trial, but was told that she could not start a third chemo regimen before starting the trial. She’s going to try the FOLFOX and if/when that stops working she will enroll in the clinical trial.

    Do you know what clinical trial your doctor is recommending to your husband? I’d like to see if it is something different than what they are recommending to my wife. The trial of AG-120 that I mentioned above is titled “Study of AG-120 in Previously Treated Advanced Cholangiocarcinoma With IDH1 Mutations (ClarIDHy) (ClarIDHy)” and the number is NCT02989857.

    Good luck. Sending positive thoughts your way.


    Joe, I have used shark liver oil to raise my platelets. (Do a google search)
    I do not have cholangio but my wife does.

    She started on gem/cis for 3 infusions but stopped because liver enzymes too high. Later did radiation plus 5FU. She has now been getting an infusion of Keytruda every 3 weeks for past 6 months. She was diagnosed 11/2015 and has good quality of life up until the last few weeks. She is currently experiencing nausea and fatigue. Doctor started her on 60MG prednisone daily for 7 days to see if it will reduce inflammation as well as her liver enzymes. She has only been on it for 2 days but already feels better.

    Although Keyrtuda is not approved for cholangio it might be an option.

    Wishing you and your mother well.



    We’re heading to the doctor tomorrow to discuss this next round of treatment

    The FOLFOX regimen is comprised of

    FOL – folinic acid (leucovorin) which is not a chemo drug

    F – fluorouracil (also known as 5FU)

    OX – oxaliplatin

    I’m making a list of questions for the doctor before we begin this. Does anyone have any questions they think I should ask during the visit? I’m assuming I have most on my current list but would love to hear your thoughts prior to make sure I’m not leaving anything out.
    Thanks as always!!


    Joe….my heart goes out to you. I have learned that brain metastases-derived from this cancer are very rare and only few cases have been reported.

    The FOLFOX regimen is comprised of

    FOL – folinic acid (leucovorin) which is not a chemo drug

    F – fluorouracil (also known as 5FU)

    OX – oxaliplatin

    Is it possible to consult with another specialist?



    Hello again,
    Thank you for your useful responses
    I am following your recommendations for timing of meds it makes sense when you think about how they work. Thank you Marion.
    Hi Gavin,
    Thank you for your comments on nausea.. Ben has tried a number on anti nausea meds and is currently on metaclopramide, it doesn’t seem to be having much effect. It is diagnosed as anticipated nausea. He is managing soft foods e.g. Porridge, smoothies, scrambled eggs, liquidized soups etc. Anything that needs to be chewed is a problem.
    He was in so much pain leading up to the appointment with the consultant last Wednesday that they decided to admit him to Christie’s for test and discuss pain options. Another CT scan was done and blood tests. The pain management team suggested a coeliac plexus block which he is considering. The results of the scan showed progression, measurable increase in the lymph nodes and at the tumour site. He discharged himself on Friday evening.
    Dr Hubner is planning to start Ben on Oxyplatin and 5Fu on Wednesday next week in the hope that it will bring it back under control.. He referred him to the Clinical Trials Team at The Christie. We went to the appointment on Tuesday where we learned a great deal. The consultant Emma Dean was brilliant. Unfortunately the trial wasn’t suitable for CC sufferers. However, she asked for consent to use a sample of Bens biopsy for gene analysis, which he gave. Hopefully this can open up other options.
    Ben’s mood is very low and he is struggling to get out of bed.
    Thank you all again just for being there.
    Best wishes


    My sister was given Opdivo when her tumors continued to grow on Oxaplatin & 5FU. It was off label and the company gave it at no charge. She had three treatments of it but the tumor continued to grow. Initially we thought that it would take 2-3 months for it to start working but a scan was done after the third infusion and the tumors were still growing. Apparently they can tell if the growth is being affected by the drug. It was stopped and she is now on irinotican.



    It’s been awhile since I’ve posted here. Diagnosed with CC back in June 2016, my journey of treatments so far: Oxcaliplatin/Gemcidibine (caused liver toxicity), Irinatecan/5FU (put me in heart failure) and now Docetaxal (1st treatment I became Neutropenic/2nd treatment 30% dose reduction and Neulasta shot I tolerated much better). I’m having my stents replaced at Mass General for the 3rd time next week prior to a 3rd Docetaxal treatment and then some scans to see if the disease has responded to treatment. In the meantime, tissue samples from my tumor are going through sophisticated genetic testing at Sloan-Kettering to see if there is an immunotherapy drug that might help me. I’m told test results take 6-8 weeks so I don’t expect to hear anything until mid or late February.
    The question I have right now: has anyone experienced severe bloating/gas after nearly every meal? It started for me after 2nd treatment of Docetaxal. I’m not sure if it’s a side effect of the chemo or the disease itself causing these symptoms. I still get hungry and food tastes good, but I get these bloating/gas symptoms that last for hours.
    I look forward to your responses!



    Carla, my wife was diagnosed one year ago and was first treated with gem/cis. She then had radiation with 5FU and is currently taking Keytruda now for past 3 months. Her hilar tumor (tumor in/on right and left liver duct at junction with main liver duct) is stable and she feels well.

    Since there is no know cure nor no know cause, she too is taking many of the same products your husband is using, including high Ph water. Since medical cannabis is illegal in Tn I’m not sure how to get access to it.

    Since medial science has yet to identify the correct bullet to shoot at CC, I just wanted to second the idea of shooting all the bullets in the magazine in hopes that one or some combination will be effective.

    We are grateful to see another Christmas.

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