Hello This is first time posting.

Discussion Board Forums Introductions! Hello This is first time posting.

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  • #97110
    positivity
    Participant

    Thank you so much for sharing your story.

    I know the journey is tough, as an advocate, caretaker, and family member it can be so difficult to see changes in your loved one and emotionally can sometimes take a toll.

    It seems that losing weight is a typical symptom of this cancer as you are dealing with the GI area, where digestion occurs and if the bile ducts are blocked, digestion of fats is more challenging and the individual has  less of an appetite.

    From the standpoint of my mom’s experience, who did not have any treatment, only palliative care, she lost 40 pounds in 1.5 years and once the weight came off it has been an extreme challenge to put it back on.  So it seems regardless of having chemo/radiation, this still happens because of the obstruction in this area.  We got to a point where satisfaction of her even having a appetite was enough, even though it is a limited appetite.  Also, with this condition it’s important to eat very small quantities at a time because they tend to quickly get stomach aches.

    We understand your challenges, and keep us posted.

    #97087
    spokanemom
    Participant

    Hello and welcome!  Your husband’s case sounds very similar to my husband’s.  The timeline is even the same except off by 1 year.  My husband was diagnosed in Nov.2016 at age 42 with a Klatskin tumor and had the same surgery you described on Dec.1, 2016.  He did not get clear margins during surgery.  Did your husband have clear margins?  He also did gem/cis followed by radiation with 5FU chemo that ended in Aug. 2017.  His recurrence was diagnosed last month and he is back on gem/cis.  The clinical trials your husband has participated in sound interesting.  We live in Spokane, WA, where there are no trials.  There are 2 in Seattle, but he does not have the right genetic mutations for those.  We’ll see how he responds to the chemo next month.  It is so hard to wait!!

    I also like reading the survivor stories here and on Facebook.  I get such good info.  I totally agree with you about how painful it is to watch someone you love go through this.  My husband has said he thinks it is harder on me than him!  We have a 15 year old son and a 12 year old daughter, and keeping up with their busy lives helps drag us back into “normal” life rather than “cancer” life.  My husband is a professor and had to take leave in Spring 2017 and again a small leave right now.  Is your husband still working?

    Again, welcome.  You are not alone.

    Victoria

    #97079
    bglass
    Moderator

    Hi Pfdlsd83,

    Welcome to our community and thank you for posting your husband’s story.  You mentioned you have been looking at this board for awhile – so I am guessing you have seen all the patient and caretaker resources on the Cholangiocarcinoma Foundation website.

    There has been a lot of discussion among board members regarding weight loss and appetite – this can be a struggle.  Have your husband’s doctors identified a physical cause for this?  Is his pain well controlled?

    I hope our colleagues here chime in with ideas regarding dealing with hernias from surgery.

    Please keep us updated on how your husband is doing on his trial.

    Take care, regards, Mary

    #97078
    Pfdlsd83
    Participant

    My husband was diagnosed  with a Klatskin  tumor in Oct. 2015 at age 55. He had a portal vein embolization in Nov. 2015.  The lobe size did  increase and he had major surgery in Jan 2016 at Hopkins.  They removed the gallbladder, tumor and 2/3 thirds of the liver and did reconstruction using part of the intestine.  He underwent adjuvant chemo with capecitabine and gemcitabine followed by radiation.     The cancer returned  and he was diagnosed in May 2017.  It was very small spots. He went into a clinical trial at NIH using capecitabine, oxaliplatin and pembro (keytruda).   He went thru 2 cycles and had a severe case of colitis and was removed from the trial.  They felt it was a reaction to the pembro. The tumors had shrunk a little with the 2 treatments.  He is currently in a trial at Hopkins using a targeted therapy.. So far things have remained stable with no new growth and a little shrinkage of the tumor on the liver.

    He has lost a lot of weight and can’t seem to put any on.  We try lot of things from shakes to protein bars and frequent small meals. He also has a hernia from the surgery and that is adding to his pain.  At the present time they want to leave that alone.  If anyone has any recommendations of types or brands of supports or trusses that would help please let me know.

    It is so painful to see someone you love go thru this. I visit the discussion/ survivor  stories for comfort and support when I can.

     

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