1 year and six days post diagnosis

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    Hi Jennifer,

    Your update on your husband’s progress is welcome good news after the ordeals he endured during his treatment.  Good scans are always reason to celebrate, but especially after so many rough spots.

    Your story about the improvised Thanksgiving meal made me smile.

    I hope the good news continues and that next rounds of treatment go easier for your husband.  Please keep us posted.  John is so fortunate to have you and other family and friends by his side.

    Regards, Mary


    My husband was diagnosed on June 26, 2018 with what was initially described as Stage 1 extrahepatic cholangiocarcinoma which post Whipple and resection at the portal vein, was downgraded to Stage 3 with the realization of 4 positive lymph nodes.  Post-op was truly a nightmare due to complications largely caused by his healthy pancreas.  I’ll leave out the terrible details.  Surgery was October 9th, he was in the hospital for 16 days, and the post-op home care was intense.  The VNA were wonderful trainers, and I became adept at the machinations of drains, PICC lines and NG tubes because he could not eat food until January.  We got through it, including a subsequent hospitalization with discharge on Thanksgiving day.  That was a funny/not funny story with our family showing great ingenuity for Thanksgiving dinner (White Castle hamburgers, Kraft macaroni and cheese and whatever else they could find at CVS), and me crying as I was plating a Thanksgiving dinner on Friday that he couldn’t eat.  This has been one hell of a ride that we couldn’t have gotten through without the tremendous medical care through this process, our employers, and our rock-star family and friends.

    Last week his scans were clean!  He had pre-operative gem-cis which had indeterminate value, surgery, post-op Folfox, followed by chemo/targeted radiation for 5 weeks, with two more Folfox treatments for a total of 10 Folfox cycles.  He had the some of the usual side effects that worsened over the duration of the chemotherapy including significant fatigue, neuropathy in his fingertips and feet, and the unusual one of very high idiopathic fevers.  We finally managed to learn some strategies for the fevers, including showing up at the cancer center instead of the ER and scheduling post chemo IV hydration every day for the week following treatment.  These fevers were scary along the way, initially landing him in the hospital a few times, and once causing him to pass out, which ranked up there with some of the scariest moments for me as his caregiver.   His team in Boston at BIDMC and in Plymouth are awesome, and are coming up with the next steps due to those lymph nodes.  He’s ‘on a break’ right now from treatment, and we hope it stays that way though they may finish 2 more cycles of Folfox, and though they won’t say he is cancer-free, we remain positive and moving forward.  Upcoming-blood tests, scans, repeat.  Even better, him beginning to feel better!

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