Pancreatic Cancer Group: Introduce yourself and connect with others

Hi folks, I was diagnosed with Stage 2 pancreatic cancer in February 2025, after three doctors told me the solution to my involuntary weight loss was to eat more. I had 12 rounds of folfirinox through September 2025 and distal pancreatectomy with splenectomy in November 2025. I was hospitalized for a non-related issue in January 2026 and a CT scan was done to look at my lungs, it also imaged the pancreas which was termed "unremarkable". Tomorrow I have the first official CT follow up and an appointment with the oncologist. The anxiety is terrible. I would appreciate hearing how others approach these appointments.

@anne7573217 Usually with a lot less fingernails. Scanxiety is real. I have been getting scans for over 3.5 years to monitor pancreatic cancer. Waiting for the post scan Dr. visit can be nerve wracking too. The first thing that I do is type out my questions for the doctor. I limit myself to three questions and a half hour to pick three. Then I don't look at them again until the morning of the appointment. Otherwise, I would never stop thinking about them. I also have learned to distract myself better over time. Do some things that you enjoy. I go for a long walk with my dog. It also makes me tired which is good. I watch a ballgame, read, listen to music. Are your questions prepared? Do you have anything that you enjoy doing that may help distract you?

No, I hadn't thought about questions, I was trying to take it a day at a time which is hard for a planner. I will work on that today. I think I keep working because it distracts me. Then I don't have time to worry about myself because I am solving other people's problems.

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.

Hi my name is Bill
I was diagnosed with pancreatic cancer on October 31, 2024. About two months later, I completed six rounds of chemotherapy, followed by a Whipple procedure. After surgery, I went through six more chemo treatments.

My CA19‑9 dropped to around 92, and my CT scans didn’t show any remaining cancer. During the Whipple, they did find about five very small lymph nodes with cancer outside the pancreas that was removed surgeon could not tell if it had spread..

Now, about a year after finishing chemo, my CA19‑9 has risen to 162. Three weeks later, it went down slightly to 152. My oncologist told me not to worry and that we’ll keep monitoring it.
My lastCT scans did not show anything.
Should I be worried? It’s hard not to feel anxious.

Thanks,
Bill

@dryheataz
I was diagnosed 2/24/26 with stage IV. My first symptom was an intense itching all over and especially my palms and soles of my feet. No significant rash except a bit on my chest and back. We to the ER one night as it was so bad and they diagnosed as an allergic reaction and they prescribed prednisone. Prednisone didn’t help, either did OTC antihistamines. Went to urgent care a week later, increased prednisone and prescribed an antihistamine. A week later I noticed that my urine was pretty dark and I was jaundiced. Had bloodwork done at PCP’s office and was sent to the ER the next day. CT scan showed mass in pancreatic head and liver lesions. The itching, dark urine and jaundice were all caused from my bile ducts being blocked and an increase in bilirubin in my blood.

@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.

@56pan thank you for sharing.

@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.

@billyeager60
Please ask your doctor to order Signatera test. When my scans show nothing we order this to see if something could be circulating and looking “for a place to set up camp”. When it is above 0, I know I should be continuing close surveillance . For me, it has always been accurate. Awaiting a new test result now.