Pancreatic Cancer Group: Introduce yourself and connect with others

@donomary Can't help with the other issues, but you might try eating 3 Dulcolax Chews before every infusion for the constipation.

@colleenyoung Hi Colleen and all -- thanks for checking in. Yes, I've finished 2 rounds of the three continuous days of mFOLFIRINOX (with pump at home) and it's been more brutal than I had imagined. I was prepared for a lot of fatigue and GI-tract issues, 'soup to poop' but hadn't imagined being sent to the ER after round 1 for critical fecal impaction, or that in round 2, sipping water would feel like knives in my throat, or peripheral neuropathy in my fingers and feet quite yet. It's been hard not to have energy even to sit up for my niece's birthday (small, quiet get-together), or to talk with friends on the phone.

I know it's a marathon, and there will be peaks and valleys and better days than others. My biggest frustration is trying to get info at all. (Such as, when they take 4 vials of blood pre-infusion, does that include CA19-9 test, to see if my markers are changing? The nurses defer to the oncologist, who is incredibly busy.) I'd like to meet with a palliative care physician, for example, but it's tough to know how to find someone when the chemo-care staff are so overworked. Do you request that through primary care? It's a challenge having moved 3,000 miles just weeks before my diagnosis, and leaving my longtime care-providers.

Sorry to go on so long, and thanks for any thoughts,
Mary D

@tra418
Hi, my wife is scheduled on 4/29 for a Whipple Robotics Surgery. She is obviously concerned. We will me going in to discuss this procedure. As a supportive husband, I don’t know what to expect. Do you have any tips?

@jeannine17 Hi and welcome to Mayo Connect. Hearing the diagnosis can be overwhelming. How are you managing overall? Do you have any additional testing to do? When will you discuss your next steps with your care team? It is great to hear about your 3 month old grandson. How precious. You probably have the biggest smile just being around him?

@lexaolexa1 OK. So everyone should be on the same page. If you could narrow all of your questions down to three, what might they be?

Hi,
I received the diagnosis of pancreatic ductal adenocarcinoma just today (4/27/26) from the U of MN. The mass is encompassing the SMV, reducing it to 1/4 its flow, so, at this point is inoperable. Just starting this personal journey into treatments and the unknown. It all started because I went to the doctor for a hemorrhoid and mentioned I had some tenderness in my upper gut - now the whole thing has truly become a pain in the butt! On a happier note, I am spending lots of time with my almost 3 month old grandson, so very aware of both the gift of life as well as its various challenges. Not sure what the treatment will entail, but will keep you posted and already appreciate the presence of this group!

Yes, my doctors are all from the same hospital and are a part of its tumor board. The ct scan review is with the oncologist, Monday May 11.

@lexaolexa1 Your doctors are all part of the same team at the same hospital correct? You get a new ct scan next week? Which doctor is your ct scan review appointment with?

I did go back and review the reports and found these:
1. "Pet Scan Collected on Mar 12, 2026
IMPRESSION: New focus of intense FDG uptake in the anterior midline abdomen, possibly metastatic.
and this from the last ct scan performed:
2. March 3, 2026 FINDINGS: Comparison to November 2025. There is increased soft tissue prominence around the superior mesenteric artery with progressive constriction of the superior mesenteric vein with only pinpoint residual patency at one level. There is engorgement of the more caudal mesenteric branches because of this high-grade stenosis."
Sorry, an exact measurement of the area wasn't found.

@tomrennie Yes, I have read the scan reports, I'm scheduled for another ct scan and followup with the oncologist the first full week in May. If I sound like I'm confused, it's because I am. I received one plan for a course of radiation treatment only to find that it was cancelled. My original Whipple surgeon doesn't want to biopsy the area because he says that it's too risky. My oncologist reports that he doesn't want to treat me because of the negative blood tests and, apparently, doesn't want to 'overtreat' me because my situation may be hopeless.
I will go back through the results of the recent ct and pet scans to attempt to locate a measurement of the size of the area that the shadow lies in and report back.
Thank you.