Pancreatic Cancer Group: Introduce yourself and connect with others

Hello! I already created a thread for my situation, but thought I'd post an intro here too. I was formally diagnosed on 3/30/23 with locally advanced pancreatic cancer. We found it by accident. Genetic testing after a DCIS (breast cancer) diagnosis in November determined that I have the ATM gene mutation. We decided to do a baseline screening for pancreatic, and the CA 19-9 number came back elevated (1789). That set off a whirlwind of appointments and scans that have verified the diagnosis. I'm told the cancer is toward the head and appears to be contained to the pancreas, but has wrapped around some blood vessels, making it inoperable. I will have a laparoscopy this Thursday 4/6, and the surgeon will install a chemo port as well. I meet with the med onc on Monday 4/10. Like you all, I'm researching, noting questions, making lists--hoping for the best but realizing this may be the worst. The diagnosis has been shocking. I have very few symptoms, all of which could be explained away easily by other things, so we didn't suspect a thing. In the space of three weeks, I've gone from healthy and busy at work and home to surrendering my job, quitting my grad school program, and having to stop tutoring. We're trying to stay positive, but it's challenging. Thank you to Mayo for this board, which looks like it'll be a stupendous resource, and thanks to all of you for sharing your stories, research and insights. I look forward to learning from you!

I was diagnosed October 2022. I’ve been through eight chemo treatments. When I went in for my ninth, they said my blood work was too low and they couldn’t do chemo. They told me to go home and rest for a week and will try again next week. It seems like I should do more like eating iron, strong foods or take an iron supplement, but they said do nothing just rest. I love to sew. Is sewing too active when I should be resting? When they say to rest does that mean to stay in bed?

Thanks Sir. Wishing you v well too

Hello! Joined the group a couple days ago; here is my journey to date:
2-3-23 annual physical with blood test.
High level
ALT w/P5P 46 IU/L
My PAC ordered on 2-22-23 Abdominal ultrasound showed a possible 9x9mm area on liver right lobe and possible issue w/right kidney. That led to an MRI on 3-25-23 showed clear liver and kidney, pancreas ductal dilation in tail with parenchyma atrophy and a 10mm nodular area in tail. And last week on 3-3-23 an endoscopic ultrasound. 9x9 mm neuroendocrine tumor in tail duct w/distal atrophy. The GI Dr said in his opinion it will have to be removed regardless of benign/malignant. He is referring me to a surgeon. Meanwhile I am awaiting biopsy of tumor; should have that tomorrow. Follow up blood test on 3-3-23 shows lowered but still high ALT at 36 and now elevated
Elevated Alkaline Phosphatase 106 IU/L.
I have no real symptoms; no pain, I quite often have floating stools.

I had pancreadectomy in December. Recovery is fairly easy with lap surgery. I remember that it did still hurt to laugh about a month out!
I drank Expedite once/day prior to surgery and also afterwards. In the hospital they gave me something similar called Juvederm. Recommended by Dr and Dietician to promote healing. I think it works! I am now a month out from liver resection and also feel fully healed. Good luck tomorrow!!

Hi. I don't know if I belong in this group yet, but I have a few symptoms and image results and blood work that seems to be perplexing my doctors.... No pain, No jaundice, light bowel movements, nauseabut no vomiting. 20 lb weight loss over months (unusual for me, usually steady weight) 50% loss of appetitie. Constant gastral discomfort but rarely even a little pain. My stools are a little lighter than usual consistently, they float very often, but without greasy film (sorry to be gross)
No diahreah or constipation.

EBV Positive over 2 months IgG and IgM, Liver Enzymes all elevated, but improving but still high GGT High. ALP highest. Ca-19 negative. Billirubins normal. Ferritin high. CMV positive past only. US showed "a little sludge" in January. CT with Contrast showed small gallstones, no sludge in Feb and unremarkable GB. March had HIDA scan, but they couldn't do CCK because Gallbladder couldn't be visualized on HIDA scan, so they wanted to remove my gallbladder. I asked for MRCP before gallbladder removal consideration. Findings:
liver normal. GB contracted. Mild intraphepatic ductal dilation. Common hepatic duct measures 9 mm. THERE IS EVIDENCE OF COMMON BILE DUCT STRICTURE IN THE MIDPORTION EXTENDING FOR 14MM. DISTAL TO THE STRICUTRE THE COMMON BILE DUCT MEASURE 9MM AND THERE IS AGAIN TAPERING AT THE LEVEL OF THE AMPULLA. THE PANCREATIC DUCT IS MILDLY DILATED MEASURING 5 MM. THE PANCREATIC DUCT IN THE REGION OF THE TAIL THE PANCREAS DEMONSTRATED A MILD BEADED APPEARANCE. THE PANCREASE DEMONSTRATED HOMOGENOUS HIGH T1 SIGNAL INTENSITY AND ENHANCES HOMOGENEOUSLY. Another finding that i'm not sure is related is it appears that I have Pancreatic Divisum. Colonscipy 9/22 normal. Upper Endoscopy 12/22 basically normal outside of standard erosions, gastritis, peptic issues, but nothing major. All my tests seem to contradict each other.

HAVE APPT TOMORROW for ERCP/EUS and I am not sure that is the right direction for me. My gastro is
perplexed as is infectious disease Dr. Went for 2nd opinion and that gastro is perplexed. They all agree I should have ERCP. I'm thinking that I should meet with oncologist before ERCP. Any thoughts would be
tremendously appreciated.

I was encourage to do what I felt up to doing. Sleep or nap if I felt like it, go for a walk etc. healthy eating helps. Part way through I was prescribed something (Grastofil needles) to take daily for 7 days after finishing the infusion to help my blood recover. Ask if there is something you can do, or limitations if you are unclear. Medical staff were awesome!

If the ERCP is done first, the oncologist will have better information to go on. I would vote for getting the ERCP before seeing the oncologist.

Brushing taken when I had the ERCP to insert. Stent came back negative for malignancy, yet I actually had stage 3 pancreatic cancer in the head of the pancreas. Location of tumour is an important factor. Don’t rely on only ERCP findings

Hello. My husband has pancreatic cancer and has undergone his first round of chemotherapy. I just want to read about other people’s experiences and maybe ask questions in the future. Thanks for having this available.