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Thread: looking for hope /husband has bile duct cancer

  1. #1
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    looking for hope /husband has bile duct cancer

    My husband was diagnosed with cholangiocarcinoma in Sept. 2015. He has undegone two radioembolization procedures.. We went in to see how the tx. was working, and I believe we received some encouraging news. The doctor said it appeared from the radiologic exam that approximately 40-50% of the cancer had been killed. Although he said the tumor had gotten a little larger. His ca19-9 numbers also went down from the 40,000 to 9,000. He still does not feel well . I am looking for any knowledge out there.. Desperately hoping for a miracle.

  2. #2
    Moderator Top User BobInBonita's Avatar
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    Welcome to the forum, but sorry you're here.

    That's a very encouraging drop in CA19-9, although still far from normal. His numbers may improve more since inflammation from treatment can sometimes cause numbers to rise (meaning his will be lower once treatment effect passes).

    I really don't have experience with either cholangiocarcinoma or bile duct cancer. It seems that treatment would be similar to pancreatic or liver cancer, since they feed into the bile duct. With pancreatic cancer, surgical removal of the tumor gives the best result. The Whipple procedure removes most of the bile duct. Is his cancer located where a surgical removal is possible? Is chemo a possibility? There may be more help in the liver cancer forum.

    My best wishes to both of you, and I wish I had more to offer you.
    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  3. #3
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    Quote Originally Posted by nephenee View Post
    My husband was diagnosed with cholangiocarcinoma in Sept. 2015. He has undegone two radioembolization procedures.. We went in to see how the tx. was working, and I believe we received some encouraging news. The doctor said it appeared from the radiologic exam that approximately 40-50% of the cancer had been killed. Although he said the tumor had gotten a little larger. His ca19-9 numbers also went down from the 40,000 to 9,000. He still does not feel well . I am looking for any knowledge out there.. Desperately hoping for a miracle.
    Hi. I wanted to touch base with you. Every time I look up cholangiocarcinoma I pretty much want to throw up. My husband has been diagnosed Stage IV. Basically they've sent him home to die. His liver is so compromised by the cancer that they fear chemotherapy would be a toxin overload it could not handle. I feel sick. Sick. He was diagnosed in January of this year. I too desperately hope for a miracle. He's gone from a healthy, really healthy 62 year old man to a shadow in a month. I'm sick with this. Sick.

  4. #4
    This is a rare cancer, my son is 35, and could pass any day now. we are on a tough path right now dealing with throwing up and pain.
    Any advice is helpful. We have at home hospice, not sure what else they can do, the on call nurse couldn't help us to night really.

  5. #5
    Senior User Dead Man Walking's Avatar
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    If I understand it correctly, you have a hospice nurse in YOUR home? Is that correct? For a patient in a lot of pain, you should go to a good hospice that has well trained staff that can administer the right palliative medications to make end of life bearable. A home nurse isn't going to be able to do this. My best wishes that you can find some sort of peace and proper ending for this nightmare.

    Best regards, DMW
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo regimen TSHTF!! 3+7 doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows CD34 cells 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Oncologist estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective

 

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