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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 2 hours ago | Replies (2140)Comment receiving replies
I am the wife of a recently diagnosed (1/2/26) pancreatic cancer patient. He started Folfirinox on 1/28 and everything was fine for the 1st 8 days. We thought he needed hydration and took him to infusion on 2/6/26. Nausea, vomiting and diarrhea continued. No improvement, and by Saturday 2/7 he had a fever. I took him to the emergency room and they admitted him. After 6 days, poor communication, with no improvement we moved him to our preferred hospital and he was diagnosed with a bowel obstruction. He required surgery and was hospitalized for an additional 17 days. (23 days total) He came home 3/2. We have switched our medical oncologist to the team at our preferred hospital and we were told that he never should have been on Folfirinox at his age.(72) Our new regimen will be Gemcitabine/Abraxane and he will have a modified schedule of every two weeks. Yesterday was his first chemo and so far so good. His current treatment plan is to do 4 months and then reassess with the possibility of surgery/radiation at that time. He is a stage IIB with no current metastasis. I am interested in connecting with those familiar with this chemo and any suggestions to increase appetite. He lost 22 pounds during the acute illness and I am trying to ensure he maintains/gains some weight back. Tastes have changed and he has no appetite. He was started on Mirtazapine yesterday as he had been on Zyprexa for 3 weeks with no increase in appetite. I am very interested in learning more and hoping to find information that will help with his treatment. He is currently listed as curative, but I know this disease is a monster and I want to find every option available since we are early in the fight to help him beat this.
Replies to "I am the wife of a recently diagnosed (1/2/26) pancreatic cancer patient. He started Folfirinox on..."
@cbeard1 as a patient, I can tell you that our taste buds change. Sometimes daily! Not good news for our spouses or caregivers that are trying so hard to make us eat. Soft foods are better for me during chemo. And small portions spaced a few hours apart. I use whey protein powder I put in applesauce, pudding, grits, etc. also yogurt with manuka honey and fruit, “Bright “ tastes work for me like sips of orange juice on ice, fruit popsicles, and also 7 up with extra lime (not Mountain Dew!). Also pasta with some butter. You might shred vegetables like carrots to add into things. Roasted broccoli becomes like candy-can eat a few at a time. I hope there is something here that could help.
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@cbeard1 I started 6 mos., 12 sessions, of Folfirinox in Oct. of '23 after a diagnosis of stage 4 acinar cell pancreatic cancer. I was 74 and never was told by my oncologist that my age was an issue, but I had been going to the YMCA to swim every day for years and that may have been a factor, I don't know. I figure the more fit you are going into chemo, the better you'll tolerate it. I tolerated the Folfirinox pretty well and the side effects were diarrhea, fatigue for 2-3 days after each infusion and that aggravating pump hooked to me for 46 hrs. after the infusion. The worst side effect was painful mouth sores from the Fluorouracil med. in the Folfirinox mixture. I was down to nothing but chicken noodle soup and lost weight. The only relief I got from the mouthsores was something called "magic mouthwash" and it has to come from a compounding pharmacy. Another side effect was the start of peripheral neuropathy in my legs, feet and fingertips. Long story, but I was put on Gemcitibine/Abraxane in '25 and it pushed the neuropathy over a cliff and I lost all hair. It was tougher on me than the Folfirinox and I recommend looking into cold therapy gloves and booties during any Gemcitibine/Abraxane infusion. You do_not_want peripheral neuropathy to the degree that it's affected me. I'm only offering this info as I have so much empathy for anyone going through these two chemo regimens. Good luck.