moxie's Journey with Bile Duct (Cholangiocarcinoma) Cancer

Spouse/Partner: Bile Duct (Cholangiocarcinoma) Cancer

Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: over 4 years ago, Female, Age: 64

  1. 1
    • moxie
    • Experience with Bile Duct (Cholangiocarc...
    over 4 years ago
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    4 tests--xray, cat scan, ERCP, Endoscopic Ultrasound and still no confirmed diagnosis..only that things 'look suspicious'

    Oh No

    We started at our normal hospital. Upon being told they wanted to repeat the Endoscopic Ultrasound, we told them we'd be going to MGH instead with all the results in hand for a 2nd opinion and hopefully confirmed diagnosis. Meanwhile my spouse has increasing ascites, has no treatment and cannot eat. Very helpless feeling.

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  2. 2
    • moxie
    • Experience with Bile Duct (Cholangiocarc...
    over 4 years ago
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    today we have appt at Mass General Hosp Cancer Ctr with gastro specialist

    Oh No

    After 4 tests[xray, cat scan, ERCP to place biliary stent, and Endoscopic ultrasound that took 6 biopsy samples AND fluid from the peritoneal cavity], our original hospital still couldn't confirm a diagnosis. Wanted to repeat the endo ultrasound with different tools and a pathologist present during the procedure[duh--why wasn't the pathologist there the first time], we decided to take all our results to Mass General. We an oncologist there this p.m. Hand carrying CDs of all the procedures, biopsy path slides, written reports etc. Didn't trust the first hospital to get everything to them in time. After 30 days still no final, confirmed diagnosis and no treatment begun. VERY frustrated for my wife. I am taking an anti-anxiety med so I can remain calm and participate in a hopefully constructive and helpful way for her. Any suggestions? We don't expect a definitive answer today but ARE hoping for a better experience than the other hosp. Any ideas of questions to ask?

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  3. 3
    • moxie
    • Experience with Bile Duct (Cholangiocarc...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Saw Dr Andrew Zhu at Mass General Hosp Boston. Spouse, Rosy, has a PET scan scheduled for tomorrow. They have scheduled her to start chemo infusions next Thursday 3/21/13 at Mass General Cancer Center using Cisplantin and GEMZAR[Gemcitabine]. No one has said yet if this is extrahepatic or intrahepatic. I asked the Dr about surgery as an option. He said that was a very good question but didn't answer it directly. Am hoping more will be revealed in that regard after the PET scan. I feel like people are talking AROUND the issue instead of directly to the issue. ANY COMMENTS or thoughts on this? Thanks to all who've responded to questions I have posted especially "Carm" and "Bellamore"

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    • moxie
    • Experience with Bile Duct (Cholangiocarc...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    The MRS started chemo last Thursday, tomorrow, 3/28, will be #2. GEMZAR and Cisplatin. plus anti nausea med ZOFRAN, and was prescribed Compazine which she didn't need] and Ativan when she took 2x to help sleep. Some mild pain but so far controlled with tylenol but thanks to our wonderful oncology nurse, Stefanie, we were able to proactive stop the Zofran from causing too much constipation by pretreating with Senokot S and powdered organic Acacia fiber and powdered CALM brand magnesium. So far so good. Tired/achiness days 2 and 3 after wards. then better...till tomorrow!>( Any suggestions on ways to better cope with side effects naturally? Doing acupuncture, epsom salt/baking soda soaks in hot tub....

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • moxie
    • Experience with Bile Duct (Cholangiocarc...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Spouse is patient. getting Gemzar + Cisplatin intravenously..2 treatments 1 week apart followed by 1 week off for total of 9 weeks. After first 6, 1 tumor showed no growth, 1 was 'hazy' on the pet scan rather than appearing as a solid mass; and what had originally appeared as 'nodules' in the omentum also showed hazy, not solid. In addition, her CA-19 marker[a test for antibodies in the blood that indicate the presence of malignancy or tumors] went from 891 prior to the chemo to 87 [normal is 35 or below]. She has now had 9 treatments so we are 3 treatments into the 2nd round. Due to having small veins, they will be installing a port on 7/9 which should relieve the discomfort of the IV chemo administration. Biggest symptoms from chemo have been fatigue and constipation caused by the meds given[Zofran] the day of and 3 days after chemo. We are finding ways to treat this by continuous use daily of Senokot and Colace along with Miralax and a more high fiber diet[DATES are our friend]. We are very happy with the treatment and the staff at Mass General Hospital and feel extremely blessed to live in Cambridge MA only minutes away. UPDATE: AFTER THE GEMZAR/CISPLATIN STOPPED WORKING; ROSY WAS SWITCHED TO THE ONLY OTHER CHEMO COMBO: 5FU...[WE SAID IT WAS FU CANCER X5]..ANYWAY, THIS WAS GIEN INTRAVENOUSLY AND THEN VIA A PUMP THEY SENT US HOME WITH. WE NAMED THE PUMP 'PRUDENCE' BECAUSE SHE WAS PURPLE AND LOOKED LIKE AN 8 TRACK TAPE A LA THE BEATLES SONG 'DEAR PRUDENCE'. ANYWAY, AFTER A TOTAL OF 18 CHEMOTHERAPY TREATMENTS FROM MARCH 2013 TO END OF OCT 2013, CHEMO WAS DISCONTINUED BECAUSE CA 9 AND 19 SCORES WERE RISING, RISING, RISING AND FOLLOW UP PET SCANS WERE INCONCLUSIVE BUT SEEMED INDICATIVE OF TUMOR GROWTH.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • moxie
    • Experience with Bile Duct (Cholangiocarc...
    almost 4 years ago
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    BEGUN 12/3/13 WITH CABOCITABINE, AN FDA APPROVED DRUG FOR USE INTREATMENT OF MEDULLARY THYROID CANCER

    Clinical Trial

    THEY STOPPED THE CHEMO FOR 30 DAYS AND ROSY BEGAN A CLINICAL TRIAL ON 12/3/13 WITH AN FDA APPROVED DRUG CALLED CAPCITABINE USED IN THE TREATMENT OF MEDULLARY THYROID CANCER. SHE HAS BEEN PARTICIPATING IN THE TRIAL FOR 4 WEEKS. WE JUST CAME HOME FROM A FOLLOW UP VISIT TODAY; DUE TO A RISE IN HER LIVER ENZYMES, EXCESSIVE TIREDNESS AND SKIN REACTION[COMMON SIDE EFFECT: SENSITIVITY/SENSATION CHANGES, NEUROPATHY IN HANDS/FEET]...THEY ARE HAVING HER DISCONTINUE THE MEDICATION FOR 1 WEEK. WE GO BACK NEW YRS EVE FOR ANOTHER BLOOD TEST TO CHECK THE LIVER ENZYMES. PROVIDED THEY ARE BETTER AND HER FATIGUE AND OTHER SIDE EFFECTS ARE IMPROVED, THEY WILL RESTART THE CLINCIAL TRIAL DRUG AT A REDUCED DOSAGE. IF NOTHING CHANGES IN THE BLOOD TESTS OR SIDE EFFECTS, THEY MAY SUGGEST THAT SHE HAVE ANOTHER PET SCAN SOONER RATHER THAN WHEN IT IS NEXT SCHEDULED FOR 1/26/14. DESPITE THE SIDE EFFECTS, ROSY MAINTAINS HER SENSE OF HUMOR, AS DO I. TWO WEEKS AGO WE WORE CLOWN NOSES TO THE FIRST FOLLOWUP VISIT AND ASKED IF WE SHOULD HAVE CALLED TO REPORT THE NASAL CHANGES AS A SIDE EFFECT SOONER. WE GOT A LOT OF LAUGHS FROM THE STAFF. [AND BESIDES, WE BOTH LOOK REALLY GOOD WITH CLOWN NOSES].

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  7. 7
    • moxie
    • Experience with Bile Duct (Cholangiocarc...
    over 4 years ago
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    CAM (Complementary and Alternative Medicine)

    Other Care

    We are both getting acupuncture 1 to 2 times per week and have found this to be extremely helpful for stress, fatigue, and insomnia. In addition, we find massage helpful. UPDATE ON 12/24/13: WE HAVE CONTINUED THE ACUPUNCTURE...VERY HELPFUL AS WELL AS OCCASIONAL MASSAGE.

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  8. 8
    • moxie
    • Experience with Bile Duct (Cholangiocarc...
    over 3 years ago
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    Cancer has spread/Metastasized

    Oh No

    Clinical trial failed. Being told no other options besides palliative care. Not going down without a fight. Will be seeking 2nd opinion. Also looking into HIPEC procedure. Lots of info online but little referencing use for cholangiocarcinoma with metastasis to peritoneum

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  9. 9
    • moxie
    • Experience with Bile Duct (Cholangiocarc...
    over 3 years ago
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    Lost loved one

    Loss

    My sweet Rosy, my wife of 23 years, whom I knew from childhood [she was 2, I was 4] passed away here in our home on 2/22/14. She is irreplaceable and there will be no recovery for me from her absence. The only consolation I have is that, though her battle was valiant and her sense of humor maintained throughout, she did not linger long in a state of illness and discomfort that she would not have wanted. With the help of Hospice, her pain was well-managed. I wish that it was different. I wish for everyone on this site that you regain your health if you are ill; and, if you are a caregiver, that God gives you strength and peace.

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