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1 year and six days post diagnosis

Discussion Board Forums Survivor Stories 1 year and six days post diagnosis

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  • #99125
    bglass
    Moderator

    Hi Jennifer,

    It is good to hear from you, but I wish your husband had gotten better news after such lengthy and difficult treatment.  I hope the pain and fatigue can be addressed so he has some relief and can feel better.

    Please do not forget to take care of yourself, at the same time as you are helping your husband and having your kids back at home.  I hope the next weeks and months include many happy moments as your family spends time together, and your friends drop by.  You are in the thoughts and prayers of our community, and I hope you will stay in touch.

    Regards, Mary

    #99124
    Jenbtskier
    Participant

    I wish I could say things have kept going in the right direction.  My husband opted to complete the remaining 2 Folfox treatments for a total of 12.  This is truly a Catch-22 because no matter what decisions are second guessed. He felt awful through those last two treatments only to see his tumor markers worsen after an initial drop from 4800 to 2800, the numbers rose to 33K.  Only a week off the last Folfox the pain began in his neck, back and belly.  This increasing pain took a toll on him quickly and was difficult to get under control.  A PET/CT revealed metastasis in a variety of lymph areas including his abdomen, his bones and his liver.  He had a celiac nerve block for the belly pain, and 5 radiations treatments targeting the pain in his neck and back (bones) along with other medicinal interventions. The Gemcitabine/Abraxane, a third line of defense and used to treat pancreatic cancer, that he tried only made him physically exhausted on a whole new level along with some new side effects.  His tumor markers have risen to 146K, possibly the highest number his medical oncologist has seen.  He is feeling a little bit better now that he has decided to end defensive treatment but pain management continues to be a challenge and the fatigue robs him of so much.  We are focusing on the little things, like getting out to our favorite coffee shop, visits from family and friends, and it became time for our kids to return home from college for awhile.  Our time with him is precious and likely only a couple of months although “there is no crystal ball”.  We thought there would at least be some time after chemo for him to feel pretty good, do a few things, feel a little normal.  I am focused on making our time the best it can possibly be.  My heart is in a million pieces.

    #99107
    Hannaha
    Participant

    Wonderful news! And especially so that your husband is really beginning to feel better. 🙂 Thanks for the update.

    #98811
    bglass
    Moderator

    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

    #98810
    Jenbtskier
    Participant

    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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