Pancreatic Cancer Group: Introduce yourself and connect with others

@56pan, welcome. You will meet others who have acinar cell adenocarcinoma in this discussion:
- Anyone have Pancreatic Acinar Cell Carcinoma?
https://connect.mayoclinic.org/discussion/neuroendocrine-acinar/

I was diagnosed with pancreatic cancer on Aug. 27, (my birthday, mind you), of 2023. 6.1 cm long tumor on head of the pancreas, several lesions on my omentum and 3 lesions on my liver were found wih a CT scan. Started chemotherapy, (Folfirinox), in Sept of '23. The tumor and lesions were found on a CT scan on Aug. 28. Tumor and lesions were all positive for cancer after a biopsy was done. Took chemotherapy for 3 months, had a PET scan in Nov. which clearly showed the tumor. Had another enhanced CT scan on Jan. 4 of this year. After the 3 months on chemo, the tumor was not visible on the scan, neither were the lesions on the omentum and 2 of the 3 lesions on my liver were gone. The largest lesion on my liver had been reduced in size by 1/2. My oncologist said "this is very good news." I had to agree. The reason I'm posting here is that the cancer I have is acinar cell adenocarcinoma. I did have the defective BRCA2 gene. My CA19 level was normal back in Sept. I was told, and confirmed with some research, that acinar cell adenocarcinoma is extremely rare. Only 1% of pancreatic cancer cases. I was wondering if anyone on this forum has had acinar cell adenocarcinoma and would very much like to hear how chemotherapy worked for them. Thank you for your time and any information.

Nice to me you Marcia, I am glad to hear you are doing well. I was disappointed I could not have the surgery at first, but I have decided it wasn't meant to be for a reason. I have had four surgeries since I was diagnosed and that is enough for a life time. I go in tomorrow for treatment. The last one was not bad because I didn't have to get that damn shot for the white blood count. I hate that shot.

@gardenlady1116 , You are way tougher than I am! I had no true complications from my Whipple, but would not have survived w/o my wife staying 6 night with me at the hospital and then babying me for another 3 weeks at home afterward.

For all: I would ask for the Creon prescription to be filled as soon as you leave the hospital. It's hard to eat anything, much less figure out what really works for you when you first get home. I'm a finicky eater, guilty of eating more fats and comfort foods than average, and that was really detrimental to my post-Whipple recovery. But if it wasn't tasty and comforting, I had little desire to eat it at all. It was about 5 weeks post-op before got my Creon. The natural post-op healing with time didn't hurt, but the Creon really help speed things up.

Thank you for letting us know your recovery time !! I think that they really don't prepare you for how long you may be down. They talk about "some people" bouncing back quickly, but it really seems to me that for most people, it takes much longer to get back to semi-normal.

I had my surgery at MSKCC by Dr. William Jarnigan. I had no complications of my surgery. I live alone and had to manage by myself, fortunately I didn't need much of anything. It just takes a lot of time to get over a surgery like that. My surgery was June 2023. It took about 9 weeks to really get back on my feet. I am not like I was before I first got sick in November 2022. I am so fortunate.

Oh my gosh I can’t even imagine. Where did you have your surgery?

It sounds like you made an excellent choice. I just had a standard Whipple and it took months to get over it, after six months I am getting a life again

Sounds like it was the right decision. Wish you the very best going forward - we always hope that the next big breakthrough is right around the corner.

I couldn’t have a Whipple because my tumor was wrapped around a major artery. He would have had to remove my pancreas, stomach, spleen and gallbladder was already removed. My esophagus would have been connected to my colon so I could never eat a regular meal and would’ve had constant painful diarrhea. Stay close to a bathroom. Not a good quality of life. And it would still come back but I’d be too weak for chemo. At least this way I can enjoy my family and deal with recurring issues as they come.