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  • in reply to: 1 year and six days post diagnosis #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.

    in reply to: Hello-Husband with CC struggling to recover from Whipple #97891
    Jenbtskier
    Participant

    Update on my husband trying to return to eating.  John has started some yogurt yesterday (2/3 of a serving total during the day) along with the continued tube feed.  He felt better yesterday than in all the days since the start of the new chemo treatment I mentioned, and it continued through the night with a decent night’s sleep and a good morning.  He had the rest of the yogurt and a tiny bit of chicken soup and experienced the return of the sharp pain he has experienced since the Whipple surgery, along with the onset of fever AGAIN.  Every time he has tried food, he has spiked a fever followed by vomiting.  We are stopping food for the day/evening and will see how the night goes. I pray for no vomiting. If anyone out there has experience or advice on how to return to eating after Whipple/TPN/Feeding tube, I sure would like to hear it! He continues to lose weight, and we need to turn this around. We discussed the situation with a nutritionist at his last chemo appointment and there seems to be no specific way to accomplish this, though she gave good (and consistent with past advice) input with regards to food to try, avoid, etcetera.  No high-fat foods, avoiding beef, nuts and high fiber foods for now.  Of course no alcohol.  No problems following these guidelines.

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