Pancreatic Cancer Group: Introduce yourself and connect with others

Thank you! Having the Mayo Pancreatic Cancer support group has been tremendously helpful as a cancer diagnosis feels very isolating and scary. Sincerely and with all my heart, I hope and pray that every one going through this finds the clarity and peace they are looking for.

Was diagnosed with stage 2 pancreatic cancer with a full bile duct blockage on June 12,2024. Went into hospital on June22. Had an emergency Whipple surgery on July 1st. Did chemo from September 2024 till March 2025

How are you doing now? The break from chemo must be nice.

17 months ago, my wife had Whipple surgery for a stage 2b pancreatic cancer. After surgery, she had trouble eating and was put on TPN. Doctors don't like that long term so after about 2 months she was pulled off TPN and put on on on G-tube, J-tube feeding. The tubes were removed 9 months after surgery and she was on her own. She eats fine, but very cautiously and limited. She has lost 50 pounds, skine and bones now.

The problem is that my wife gets these hot pains in her abdomen that result in vomiting. There is no nausea associated with this. Neither the doctors nor we have figured out a correlation, let alone causality, for why this is happening. There doesn't seem to be a connection with what she eats or pills that she take, the episodes seem random. She'll go a week with no vomiting, then have a period of three vomiting episodes on a 15 hour period.

Has anyone else seen this?

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

Hello @kerrylc ;
You may not be a candidate for surgery NOW but you can be in the future! Chemotherapy is almost always the standard prior to surgery. If it provides good results, some other targeted therapies can be implemented resulting in necrosis and perhaps surgery. It is a journey for sure, one that I have been on since 2021, but live optimistically and take care of your body so you can make it through folfurinox. It’s definitely not a party .
may God bless you with strength, health, and wisdom.💜

Thanks so much for your words of support @gamaryanne! I'm definitely just at the start here and not always sure of where I'm going. Glad to hear that you're going strong since 2021. Taking care of my body is definitely a priority. I'm getting some relief with acupuncture through my oncology clinic.
Bless you, too!

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

---

@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!

@kerrylc , There is a new, non-invasive ultrasound procedure called "histotripsy" that is FDA approved to treat liver tumors. I'm pretty sure that applies to both primary liver tumors and those from other sites that have metastasized to the liver. It has been described in some articles as a bridge helping patients get to a condition where they will qualify for surgery on their primary tumor.

It's being rolled out slowly across the USA. The equipment manufacturer has a provider site locator website here: https://histosonics.com/find-edison-provider/ . It shows two sites in Chicago, including Rush University, so definitely ask your team about it!

Dr. Kevin Burns at Providence Mission Hospital in Mission Viejo, CA was one of the early adopters. He provides a good overview here: https://youtu.be/JIhKzQKuj4Y?si=VgYXw3a0RuTfUUoW

There is a histotripsy interest group on Facebook, and Dr. Burns himself occasionally participates.

I hope this brings you some encouragement. Best wishes!

Thanks so much for this valuable information and the links, @markymarkfl ! I will ask my oncologist about it tomorrow.
All the best to you!
Kerry