Pancreatic Cancer Group: Introduce yourself and connect with others

@jim1234
Where is your cancer located (head or tail)? Do you know what your mutations are? What is your CA19-9 at? Are you at a center of pancreatic excellence where they focus on pancreatic cancer? You need to start here answering these questions. Alcohol and pancreatic cancer don't mix so sounds like you need a second opinion. I'm 68 now and started out symptoms at age 64 with Kaiser telling my symptoms to my primary who didn't have a clue. I changed insurance at 65 and was properly dx 3 months later with stage 2. I'm stage 4 now as I have an aggressive type; others do not and are living for years, though many must FIGHT it by being your own advocate, knowledgeable and taking care of yourself. At one point my cancer antigen, CA19-9, was at almost 14,000 and after chemo (gem/abraxane) it's at 150. You sound young and healthy before your diagnosis so you must act quickly to have a winning chance, Best wishes and pray and have a good support of friends and family and have a good attitude!

Hi I was diagnosed with stage4 pancreatic cancer. I haven’t started treatment yet. I’m looking at trials but the one I was interested in it’s really hard to get an appointment in a timely matter. So I may have to just start on the standard folfirinox. Getting educated on this set me back days and I did delay things more by not canceling our 5 day vacation. I have an appointment to get my port installed. Worried about quality of life on Folfirinox My oncologist say I can keep working out , keep hunting and even have 2 beers a couple times a week. I’m lost right now

@colleenyoung I am coming to Mayo Clinic for a second opinion on a recent diagnosis of pancreatic cancer surgery. My local doctors have staged it at stage one as it was found accidentally when having a CT scan to look for possible blood clots in the lungs. Anyone else had treatment at Mayo for stage one?

@kuma

I had CT scans for a year or two after my surgery, and again about five years later. There were no signs of a return of cancer.

My CA 19-9 at diagnosis was about 1300. After 4 months of neoadjuvant chemotherapy with Abraxane and Gemcitabine it came down to around 20, exceptional efficacy.

Doctors have told me any recurrence is likely to show up in an elevated CA 19-9 before it is evident in scans. My CA 19-9 has been tested yearly and it has been around 10 for several years.

@ardithbjorge, welcome. It looks like your message is incomplete. If you're having technical issues, send the moderating team a message using this form https://connect.mayoclinic.org/help-center/

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@kuma
“No Evidence of disease l” did “scans” give rise to this?

@hopeful33250
We are sticking with the team we have. We have an excellent doctor with extensive experience. The beauty is there is Mayo to call. Their years of experience invaluable.

Hello @dyas and welcome to Mayo Connect. I appreciate you sharing about your wife's journey with pancreatic cancer. As you mentioned, "Hoping no praying Mayo has some ideas," I'm guessing that she has an appointment scheduled at Mayo Clinic. Is my understanding correct?

Mayo has excellent specialists, and I hope she finds some answers. Will you post again with any questions or concerns?

@castell Thank you 🙏🏻 so much