Pancreatic Cancer Group: Introduce yourself and connect with others

Disclaimer: I have zero medical training, and all this is just my experience and understanding.

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@vector , I can't say I'm experiencing the exact same thing, but there's a lot of overlap!

I had a CICC (central) line inserted for TPN about 9 months ago, and a G-tube for venting at the same time (replaced twice since then) due to a blockage in my stomach outlet.

It took chemo and radiation plus two surgical attempts to open the outlet enough for a stent, which is now allowing me to eat somewhat normally. I'm trying to slowly wean myself off the TPN and hopefully get both tubes removed.

My vomiting is about the same frequency as your wife's, also not accompanied by traditional "nausea" -- rather spontaneous actually, although there have been some definite triggers -- and anti-nausea meds like Zofran have not helped. I'm still getting biweekly chemo, which makes it worse, ... but sinus drainage, a tiny bit of toothpaste in the back of my throat, and sometimes just certain smells or thoughts cause me to run for the barf bucket. A lot of times the vomiting is only dry heaves (more coughing up a little bit of clear tracheal/lung or esophageal phlegm), and only food if I've really been bad with my diet. Fatty red meats cause a lot of problems. I do take Bentyl (dicyclomine) when I have stomach cramps that feel like bloating and pressure that simply burping won't relieve.

Getting to the root of my problem, which might be similar to your wife's: My Whipple was a "pylorus preserving" Whipple, which left the valve at the bottom of my stomach intact. And my vomiting didn't begin after the Whipple, only after the stent was placed. The stent basically left my pyloric valve permanently open, as would a conventional Whipple, meaning there might be a possibility of reflux from bowels back to stomach, or gas exchange and pressure equalization between lower bowels and stomach, causing stomach discomfort.

To reduce the chance of reflux, I try to remain upright as long as possible after meals or drinks. I've elevated the head of my bed by 6 inches so gravity pulls stomach contents downward while I sleep at night. I can't tell if they've helped, but they didn't hurt. Also, remembering to take my Creon with meals seems to help break down the food in my stomach so it will more easily pass through the stent. I was getting Omeprazole with each bag of TPN. Some post-Whipple patients remain on Omeprazole forever to prevent ulcers; ulcerated tissue may also cause irritation that contributes to vomiting.

Bottom line: I barely have an idea of my own situation, and can only speculate about things to consider in your wife's situation. But mine has improved somewhat over the last 8 months, so there is hope.

Wishing you both the best!

Hi all, new to this chat group on pancreatic cancer. I was diagnosed in January 2024 with stage 2. Did 12 rounds of chemo followed by 24 radiation treatments . Tumor went from 6 cm to 3. Scheduled for Whipple December 2024 and when they opened me up , found tumor was engaged with an artery so the surgery was aborted while on the table. So back on chemo for 3 months with CT scans then meeting with Duke University for 2nd opinion in August. Appreciated all your alls post as it’s encouraging knowing I’m not in this alone

Hi all, new to this chat group on pancreatic cancer. I was diagnosed in January 2024 with stage 2. Did 12 rounds of chemo followed by 24 radiation treatments . Tumor went from 6 cm to 3. Scheduled for Whipple December 2024 and when they opened me up , found tumor was engaged with an artery so the surgery was aborted while on the table. So back on chemo for 3 months with CT scans then meeting with Duke University for 2nd opinion in August. Appreciated all your alls post as it’s encouraging knowing I’m not in this alone

Hello Colleen and group.
My name is Kerry, and I was diagnosed in March 2025 with adenosquamous carcinoma of the pancreas (ASCP). It has spread a bit to the liver, so I'm not a candidate for surgery.

Fortunately, I'm in Chicago getting excellent treatment at Rush University Medical Center, a PANCAN Center of Excellence. My treatment is Folfirinox for 3 days, every other week. So far, I've had two rounds (hospitalized with an infection briefly that delayed treatment).

Fatigue has been debilitating, also lack of appetite and weight loss. I was just prescribed Marinol, which seems to be helpful.

Any words of encouragement would be appreciated!
Kerry

I had the same chemo treatment last year. Same side effects but it got me out of the hospital.
From there they went to PRRT, which was only one day every other month, and not hard to tolerate. That evidently reduced the pancreatic tumor to where they decided to do surgery after all.

Unfortunately I also have disease spread to the liver, so I wonder if the surgery really did much good or just bought a little time. At this point some clinical trial my be my best hope as the oncologist seems out of answers. He seemed uncertain last time I saw him and postponed our next meeting.
Anyway best of luck.

I had the same chemo treatment last year. Same side effects but it got me out of the hospital.
From there they went to PRRT, which was only one day every other month, and not hard to tolerate. That evidently reduced the pancreatic tumor to where they decided to do surgery after all.

Unfortunately I also have disease spread to the liver, so I wonder if the surgery really did much good or just bought a little time. At this point some clinical trial my be my best hope as the oncologist seems out of answers. He seemed uncertain last time I saw him and postponed our next meeting.
Anyway best of luck.

HI, I am Bette Davis.. I was diagnosed with pancreatic cancer at the end of March. I will be getting my third chemo treatment next week. This morning I read about a procedure called NANOKNIFE which is described as a minimally invasive procedure where electrical pulses destroy cancer cells. It is used when the tumor is wrapped around important blood supplies or ducts, etc. That describes my tumor and I am interested in learning if that procedure is done at Mayo Clinic in Rochester. I am going for an evaluation. They are reviewing all my scans and information now and I am waiting for a call to schedule first available appointment.