Pancreatic Cancer Group: Introduce yourself and connect with others

Right now he is on Creon, so he is able to digest food and get nutients. We are very active and so the lack of energy and strength to do what he used to is frustrating and depressing him. He also has some pain from his kidney being blocked and getting irritated.
For me it is working through the situation with him. One minute I'm the greatest thing in his life, the next he's angry because what ever is bothering him at the moment and I become the target.

A gatekeep would be awesome. Just someone to coordinate everyone would be great. Sometimes I know communication between the Doctors is getting messed up. Like the "telephone game."

Newbie here, hello all.

I have not been diagnosed with PC, but am monitoring for increasing dilation (main duct and bile duct). Most recent MRI showed the appearance of "tiny" cysts in the pancreas, largest 4mm, apparently not on previous imaging. Doctor says the cysts are of less concern than the dilations and is not yet recommending repeat EUS (last one December 2023). CA19-9 at 17. Other data, hyperkinetic gallbladder: 96%EF on HIDA.

Best thing so far for my symptoms was moving to low-fat diet last fall. Now I wonder what else I can do to 1) support my organs and/or 2) help identify source of dysfunction: Sphincter of Oddi? Ampulla of Vater? For example, after reading that caffeine can affect the SO, I am cutting back on coffee/tea.

Much appreciate any input on other diagnostics to pursue, ways I can be proactive, or things you have learned about working with doctors and the system overall.

Thanks and best wishes to everyone. Very glad to have found this group.

pf

I'm sure you are trying to help your husband, but it is difficult to deal with his changing moods, @vlny2018. You say that you are very active. Are you still attempting to keep up an active lifestyle? If so, more rest breaks might be helpful.

I would encourage you to look at Connect's support group for Caregivers. Here is a link to those discussion groups, https://connect.mayoclinic.org/group/caregivers/. In this group, you will find many other spouses who are dealing with physical and cognitive changes as they seek to provide the best care. Caregiving to a person who is experiencing so many physical problems can certainly be difficult.

Have you mentioned these mood changes to any of his doctors?

Diagnosed 1/16/24

Welcome, @pfrances. to help you on your pursuit to monitor the pancreatic dilation, here are a few discussions that may be helpful.
- Dilated pancreatic duct: What to do?
https://connect.mayoclinic.org/discussion/4mm-dilated-duct-pancreas/
- Sphincter of Oddi Dysfunction: What helps you?
https://connect.mayoclinic.org/discussion/i-have-sphincter-of-oddi-dysfuncfion-it-causes-severe-upper-abdominal-pain/
See more discussions using the group search: https://connect.mayoclinic.org/group/pancreatic-cancer/?search=dialation&index=discussions

How often are you being monitored?

Welcome, @dksissy10. I see you were diagnosed only a few short monght ago. I look forward to learning more about you. What stage of pancreatic cancer do you have? What treatment options are available to you? How are you doing?

Thank you so much Colleen! I will check out those resources.

Next MRI is 3 months.

Hi joining on behalf of relative dx pancreatic cancer 12/2019. completed radiation and chemotherapy. had gb stent placed at the time, and replaced recently. now admitted to hosp after vomiting large amt old blood. followed by two episodes BRB vomiting requiring 2 units. Ca 19 has been normal thruout (?). has had multiple CT’s and a pet scan showing no new mass.
Now planning a minimally invasive duodenal bypass surgery. no peritoneal lesions noted after laparoscopic exam (large amount of scat tissue) and washings submitted for pathology
(negative). currently on tpn and npo.
The main concern right now is to avoid a repeat gi bleed .
platelets 130 and stable. Hgb 8.6
any experience with this type of gi surgery? They are hoping to avoid open laparotomy.
Thank you for any help.

Welcome, @burksgrl. I'm tagging a few members like @mamarina @faithann64 @lfitz @k13 and @hopeful33250 who are familiar with GI issues after pancreatic cancer treatment and may have experience to share about bypass surgery for a blocked duodenum.

You may also be interested in this related discussion:
- Anyone have experience with total parenteral nutrition with PC?
https://connect.mayoclinic.org/discussion/anyone-have-experience-with-total-parenteral-nutrition-with-pc/
How soon is the surgery planned for?