Doctor suggests Hospice. Too soon?

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  • #63216
    marions
    Moderator

    Jeff…Due to the rarity of occurrence of combined Hepatocellular Carcinoma and Cholangiocarcinoma, I would obtain a second/third opinion from a high volume cancer center.
    Hugs,
    Marion

    #63215
    pcl1029
    Member

    Hi,
    Cardiotoxicity is a well known adverse drug reaction especially if the patient had cardiac related issue before the treatment of chemotherapy.
    There are two things I will do in your situation before hospice.

    1. If your mom is as well as you mentioned and there is NO metastasis beyond the liver. 2nd opinion by an interventional oncologist for radioembrolization or chemoembo is recommended. ( We have a patient in Egypt who has the same ICC-HCC type cancer that your mom had and undergo this treatment.);If you go to John Hopkins,you will get a better experience overall since JH is the # 1 hospital overall in the States for 21 years before they got knock down by Mass.univ. hospital this year.
    2. After the above, if you still want to ,get a 2nd opinion from the #1 oncology institution in the world, the MD Anderson down at Texas. Ask them whether they can do an assessment of your mom by just sending in your mom’s record. and get their opinion on further chemotherapy or targeted agents treatment.
    After the above consult, then you and your mom will have a better picture about what to do in the near future.and in doing so, you, as a son, will never regret and ask the question—what if—? in the future for missing anything in the wonderful care for your mother and you can sleep soundly afterwards.
    May I ask how old is your mom and any other health problems besides cardiac related? Ascites,back pain,shortness of breath,fatigue?
    and when is the last CAT scan or PET scan done? did the oncologist rendered his/her opinion base on the anything else or with/without the result of the most recent Ct scan?
    BTW,Gemox+erbitux is NO better than Gemox alone as the final data comes out from the Phase II”Bingle” trial—ASCO 2012.
    As always I am only a patient of intrahepatic CC for the past 37 months and not a doctor. I am alive today because of God’s Grace and nothing more.
    God bless.

    #7149
    jeffl
    Member

    Hi all,

    After just over a year of being stable on GemCis with stage 4 ICC, my mom, Grace, progressed just over a month ago. Since then she had one dose of Irinotican 5FU but stopped when she had to be hospitalized for congestive heart and fluid issues. Her bilirubin was also elevated to 3.0, scrapping plans to get her on Tarceva/Xeloda.

    However the pulmonary team relieved about a litre of water around her heart and she has since been discharged, feeling better than she has in a long time. Her bilirubin has decreased to 2.4 and she is walking, cooking and going about her own business at home.

    Yesterday, we had her first visit with her oncologist at MSKCC in 3 weeks, and he broke the news that he didn’t think she could continue any chemo treatments and that she should start hospice care at home.

    This seems premature to me, as her bilirubin levels are declining and not astronomical, her performance is improving after dealing with the heart condition, and we had not really tried any of the second line treatments.

    Has anyone heard of treatments available for someone ECOG 1-2 with grade 2 hyperbilirubinemia? Perhaps low dose chemotherapy?

    It just seems too soon to throw in the towel.

    As an aside, this board has been such a support and resource over the last year. My family and I are so thankful for the community here.

    Thanks,
    Jeff

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