Pancreatic Cancer Group: Introduce yourself and connect with others

@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.

@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?

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

@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!

@mnewland99 I'm not sure where it's located. But my CA19-9 is 14 and not an accurate indicator for me. I think it's because where it is located. He said they will have to use scans to monitor my cancer rather than the ca19-9 testing. They want to start me on Folfirinox ASAP. I'm 69 and still work out at they gym. I bench pressed 225 three times yesterday but don't see how that'll help me handle treatment even if my doctor acts impressed and said I should be able to handle whatever they throw at me.

@jim1234
I was on folfirnox following my surgery in 2023. It brought my ca19-9 downa to 6. It's typically based on the mutation you have. I had 12 treatments in. 6 months and was off of it for 4 months when it spread to my liver and peritoneum (those were too small to get a good biopsy). Exercise is good for you mentally and physically,. I did dumbells and walking before I got sick. Up until 3-4 weeks ago I was walking 3 miles 4-5 days per week until some other issue came up with hematuria (dr still trying to figure out the cause). I did buy a new 5 lb dumbbell ( no comparison to your weights !) so I can do that in my chair watching my movies ). I still work a bit at my consulting business because I love what I do. Life is to be savored, just that we have to fight for ours!

@mnewland99 is your treatment palliative or trying to cure

Became palliative only in June of this year when my peritoneal nodules started to rapidly grow as well my CA19/9. In January of this year I was considered cancer free following MRIdean radiation treatment on liver in October 2024 and good results on my Guardant 360 blood test and was put on only Gem chemo as maintenance until end of April this year when liver pain and abdominal pain began.

New here and I would rather be any other place than dealing with this. My mom was just diagnosed last week after experiencing pain and nausea for a few days then turning yellow... jaundiced. So far we have been told she is Stage 2B from the scope and biopsies and PET scan is Monday. I'm very anxious waiting to find out if it has spread. We were also told it is in at least 3 lymph nodes and soft tissue around the pancreas. Her Ca19-9 test came back yesterday and it is over 6,000. She is 85 years old and we are all devastated.

@gin84

Dear Gin84 -- I was 69 when my wife and I were completely surprised (shocked) by a bile duct cancer (cholangiocarcinoma) diagnosis in January 2024. My curative 10 month treatment plan included 10 biweekly chemo treatments, 28 daily radiation sessions (M-F) and a 4.5 hour bile duct resection and reattachment surgery at Mayo Rochester with Dr. Mark Truty a year ago. As your Mom and family embark on this unexpected and unwelcome journey, you're not alone, and 21st-century American medicine is delivering a variety of options. You're going to learn a lot along the way. I recommend starting by identifying what comprehensive cancer centers are near you. Dan