Pancreatic Cancer Group: Introduce yourself and connect with others

Hoping that trial comes through for you 👍🏻. I know what you mean about how aggressive things are when you’re off chemo. Starting G&A later this morning. Sure hoping that within a month the CA19 will drop down. It has gone from 330 to over 1,300 in just over a month.

Again, wishing you good luck on getting into the trial.

Hola! Acabamos de recibir la noticia de que mi esposo tiene cancer de pancreas y entre en este grupo de apoyo para mantenernos informados de lo relacionado a esta enfermedad. Estamos positivos de que encontraremos el tratamiento adecuado.

Thank you for sharing.
My name is Cealia, HI ya"ll.
My pancreatic cancer was just diagnosed, also by accident. I was diagnosed with NAFELD ( Fatty liver disease). 2cm mass found in head of pancreas. They put a stent in due to biliary blockage.
Real new to this side of the bed as I am a retired nurse.
I have a million ?s as a patient. We are blessed to have retired? Moved to FL only 2.5 hours from Mayo clinic.
Is there a newbi's group.
? About what should I get taken care of before chemo starts...

Hi @cealia56 , Welcome to Florida and welcome to the group.

There's not a "newbie" area of any sort -- just feel free to post whatever questions, answers, thoughts, or comments you might have here on the forum. You can respond to comments within a discussion, start a new discussion, contact other members via the private message utility (envelope icon in top right corner of screen), and so on.

For those newly diagnosed, the "questions to ask your oncologist" in these two threads might also be useful:
https://connect.mayoclinic.org/discussion/newly-diagnosed-questions-to-ask/
and
https://connect.mayoclinic.org/discussion/which-questions-should-i-ask-my-surgeon-i-think-whipple-is-likely/
Little things to do before chemo starts depends somewhat on what you've already done, but getting a good pre-chemo baseline will help you know how you're responding to treatment. CA19-9 level, CEA level (in case you don't produce CA19-9) and imaging are significant firsts. Sign up with a patient advocate at pancan.org

Germline (hereditary/inherited) mutation and somatic (external / environmental / spontaneous) mutation testing can help inform your treatment. If there was a biopsy taken with enough tissue remaining, consider having it tested. Pancan.org has a KYT (Know Your Tumor) program where they can pay for having your tissue tested at Tempus Labs. A "Signatera" recurrent blood test can also be built from your biopsy tissue, and used as an additional method to gauge response to treatment. (It's a ctDNA test -- measures circulating tumor DNA in your blood.)

Other stuff to consider could be asking about pre-chemo tests to see if you're allergic to any of the ingredients...

I'm sure we'll think of more, but those are a start. I wish you well, and hope you know we're all here to support each other!

Hello @meca and welcome to Mayo Connect. I am glad that you found this forum and have an opportunity to talk with others about your husband's pancreatic diagnosis. We have many members in this support group who have lived with this diagnosis for many years, and they will be happy to post with you.

In order for others to share their experiences with you, could you share a bit more about the type of pancreatic cancer and the stage? Also, if any treatment options have been offered, please share that as well.

For those newly diagnosed, two pancreatic cancer advocacy organizations have informative sites with comprehensive articles, webinars and the support services they provide. The Pancreatic Cancer Action Network offers patient mentoring and also can provide information on support group meetings in one’s area as well as groups that conduct meetings by Zoom.
https://pancan.org/facing-pancreatic-cancer/diagnosis/recently-diagnosed/
Let’s win PC.org is very good at providing breaking information on research and clinical trials.
https://letswinpc.org/newly-diagnosed/

Thank you I will look these up.

Cealia,
I also am a retired nurse & being on this side of the bed is challenging to say the least. I have stage 4 inoperable pancreatic cancer in the tail which was also found by "accident" due to CT of my lungs as a former smoker. I had a mass on my adrenal gland and mets to my lungs. I am in GA about 2.5 hours north of Mayo Jacksonville. Mayo did the confirmation since I was striking out on referrals to "local" (45 min. away) gastro docs! You are so lucky to find this site early! Took me forever to find this group. The other 2 sites recommended are really helpful too (Let's Win & pancan .org). You may find your nursing research skills getting used to try & find articles that help you deal with nutrition & labs, pain management, drugs, and therapies like acupuncture (helps me), exercise and motivation.

Hello everyone. Joe from Pa here. My wife was diagnosed with pancreatic cancer in 2021. She was diagnosed after repeated trips to her primary physician who prescribed heartburn medicine. Thankfully she pushed him and finally a gastro doc recommended an MRI which discovered a tumor in the middle of her pancreas. She received surgery in Hershey, Pa where they removed her tumor, part of her pancreas, her spleen and 13 lymph nodes. Unfortunately a year later the cancer was found to have spread to other lymph nodes in an inoperable area. After several rounds of Chemo drips both before her surgery and after she has come to the point where she can no longer tolerate the drip and the FU box they sent her home with. She is now on pills from a targeted therapy still getting side effects, but tolerable so far. It's been a long road for her and being her caretaker has been challenging. She has been though a myriad of emotions from anger to tears. Fighting to quiting to fighting again. We live in a rural area of Pa between Philly and Pittsburgh and I wonder if she is receiving the best care here. She is on her 4th oncologist in the past 2 and a half years. The local cancer clinic who is caring for her here is associated with John Hopkins in Baltimore, MD who is in communication regarding her case and in agreement with her treatments. In any case so glad I found this site. Hoping to connect with others going through the same issues. We don't have family close as we are from the Philly area as I moved us out here for a job 10 years ago. Don't hear much from them. I honestly think they don't know what to say to us, so out of sight out of mind, unfortunately. We are both retired now. Thanks for reading our story.

My husband was diagnosed with Stage IV pancreatic cancer with metastasis to the liver and peritoneum. He is 67 but is in really good physical condition due to working construction his entire life. He is getting ready for his 12th treatment of Folfirinox next week and is still doing fairly well considering the severity of the disease and degree of spread. His tumor is in the tail of the pancreas. We did go to MD Anderson for a second opinion but they couldn't offer any different treatment than we are receiving in Kansas City. He still works construction except for the days he is on the 5fu pump (we own the company so his schedule if flexible). Outside of fatigue with anemia, which is chemo related I assume, and some bowel issues a few days per month he feels fairly good. His last scan yesterday does show "stable widespread metastatic disease" but also a new condition has arose. This is copied and pasted from the actual report in his mychart. We do not get to speak to the oncologist for another week, although I do expect them to call since there is another "procedure" needed, but I am unclear as to what this new situation means. Does anyone have any experience or knowledge of the following condition?

"2. Development of moderate right hydroureteronephrosis with abrupt transition of the dilated right ureter at the level of the false pelvis likely owing to distal ureteral obstruction from peritoneal metastatic disease. Consideration should be given to placement of a percutaneous nephrostomy or ureteral stent to preserve renal function."

Thank you for any help with this and prayers for all of us dealing with this evil disease currently and in the past!