Bile duct cancer

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mattiegirl
mattiegirl Member Posts: 2
in Liver Cancer #1

My husband was recently diagnosed with Intrahepatic Cholangiocarcinoma (bile duct cancer) stage 4, he is 54 years old and we have a 11 year old son. He is getting a combo of chemo of Gemcitabine and Cisplatin. So far he taking the chemo well just a little tired, he is still going to work, has lost a few pounds but over all not in too bad of shape. I was wondering if there was anyone else out there going thru the same thing that could shed some light on what we might be facing in the furture.

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  • Hahahampton
    Hahahampton Member Posts: 1
    #2
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    My husband has been going

    My husband has been going though this for 5 years please email me hahahampton@gmail.com

  • Aissia
    Aissia Member Posts: 1
    edited April 2017 #3
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    TO Hahahampton

    May I email you, also? Someone in my family has been diagnosed with inoperable Cholangiocarcinoma and just started chemo.

  • especk88
    especk88 Member Posts: 3
    #4
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    Mattie, how is your husband doing now?

    My friend is also 54, and has been diagonosed with the same cancer. He is in chemo right how. Have you seen any improvement after chemo treatment?

     

  • richnkim
    richnkim Member Posts: 31
    #5
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    o

    Some improvements

    His tumor markers started out at 635 and are at 220 so there are improvements but his body can no longer handle chemo. This is how it usually goes,so we are now looking into clinical trial with the gene mutations that he has. So far we have found a few nothing too great, he is thinking about starting one of them at The Univ of Chicago in a few weeks.

    I wish your friend the best of luck this type of cancer is a rare beast.

  • rosaria1120
    rosaria1120 Member Posts: 3
    #6
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    Hahahampton said:

    My husband has been going

    My husband has been going though this for 5 years please email me hahahampton@gmail.com

    May I email you as well?

    My dad was just diagnosed and I'd love to speak with someone who is familar with this type of cancer

  • rosaria1120
    rosaria1120 Member Posts: 3
    #7
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    My dad has the same cancer

    I am happy to hear your husband is tolerating the chemo well.  Any news on whether the tumor shrunk?

  • richnkim
    richnkim Member Posts: 31
    #8
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    Clinical Trial

     

    My husband started clinical trial INCB054828 for FGFR2 mutations just 9 weeks ago,he's tumor marker was 263 and is now 97. So far really no side effects, his stomach issues have resolved while being on this trial the only problem is that it raises his phosphorus levels and he has to take a drug to lower it and watch what he eats other than that he says he hasn't felt this good in a long time. We will be getting a CT scan in a few days to see just much this drug has shrunk the tumor on his liver and the ones in his lungs. We are praying for the best.

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #9
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    Welcome back, RichnKim.
    Thank you for your update. I am thrilled to hear about he is feeling so good now. That's a very interesting study. Would you like to share here which arm your husband is assigned to? Just an academic curiosity.
    Best wishes to all.
  • richnkim
    richnkim Member Posts: 31
    #10
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    Clinical Trial

    The trial he is on is a Phase 2, Single Arm study for unresectable Cholangiocarcinoma with FGFR2 mutation. Today he had his first CT Scan since starting the trial he has had a 10% shrinkage of liver tumor and lung nodules!  So he is ready for another cycle of the trial and they will do another scan in 9 weeks. I was worried that this drug wasn't going to work on the lung nodules because the chemo wasn't, the chemo was shrinking the tumor on the liver but what was in the lungs kept growing is why we went to a trial, which was leading me to believe that what was on his lungs was not not mets from the CC but a different kind of cancer. We can not biospy the lung nodules because they are too small. But sense this trial drug is working on the lung nodules and this drug is for the FGFR2 mutation which is the CC mutation I do believe now what is in his lungs is coming from the liver. It would be nice if it took care of all the lung nodules  because then he would might have a chance of surgery on his liver but they would never do surgery with any type of mets anywhere. So we are happy with shrinkage!!

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #11
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    richnkim said:

    Clinical Trial

    The trial he is on is a Phase 2, Single Arm study for unresectable Cholangiocarcinoma with FGFR2 mutation. Today he had his first CT Scan since starting the trial he has had a 10% shrinkage of liver tumor and lung nodules!  So he is ready for another cycle of the trial and they will do another scan in 9 weeks. I was worried that this drug wasn't going to work on the lung nodules because the chemo wasn't, the chemo was shrinking the tumor on the liver but what was in the lungs kept growing is why we went to a trial, which was leading me to believe that what was on his lungs was not not mets from the CC but a different kind of cancer. We can not biospy the lung nodules because they are too small. But sense this trial drug is working on the lung nodules and this drug is for the FGFR2 mutation which is the CC mutation I do believe now what is in his lungs is coming from the liver. It would be nice if it took care of all the lung nodules  because then he would might have a chance of surgery on his liver but they would never do surgery with any type of mets anywhere. So we are happy with shrinkage!!

    Lung nodules, disappear!
    In my opinion, the fact that the same drug is working differently on tumors in different organs, does not necessarily mean they are different kinds of cancer because (a) cancer evolves, (b) drug availability and thus efficacy is different in different organs.
    But I totally agree with you: I also like the way the new drug(s) (do we know what he is getting, or is it blind study?) is complementing the response to chemo.
    Hoping for a continuing response, and better days for him.
  • richnkim
    richnkim Member Posts: 31
    edited September 2017 #12
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    Second CT Scan

    Rich has had his second CT Scan now while while being on Clinical Trial INCB054828 and this time things have come back as "stable",I was hoping for more shrinkage but with CC cancer stable is good. His CA19-9 test was up last time it was 97 and now it is 187 so that has got me worried. With this trial they do not want you taking Vit D so Rich went off it and his levels were really low and that is when we got the nice tumor marker test of 97,well they said his level of Vit D was too low and he had to double the normal dose of Vit D and that is when we got the high tumor marker marker test of 187. I asked them if they knew if this clinical trial drug didn't work as well with Vit D since right from the beginning they said get off the Vit D and they said they didn't know it was just one of the things on the lists that patients shouldn't take.My thoughts are it seems the trial drug worked best when his level of Vit D was low and now that he is taking a double dose the drug isn't working as well,so I think he should stop taking the Vit D for a month take a new tumor marker test and see what happens.

    As for side effects they have kicked in this cycle with alot of joint pain so they have given him Celebrex for that,he also has hand and foot syndrome,the skin on hands look like it has been burnt off they are so red and sore looking. He has been using our son's eczema cream and that has helped healed it up but his hands hurt to hold onto anything or to try to open anything up.

    Praying this cycle of the drug has less side effects and shrinkage of the tumors.

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