Anyone have Pancreatic Acinar Cell Carcinoma?

@colleenyoung
So far, so good. I have reduced the amount of Creon to 24,000 per meal, nothing with snacks unless they are very fatty. My incision is hardly visible and my appetite is good. I just have to remember that I have 1/4 less stomach and digestion is a slow eating process with lots of small meals. I have lost about 5 lbs. since pre-surgery, but that's been over 2 months. Right now I am on the Mendocino Coast for the weekend with a group of friends. I try to get at least 15 minutes of walking in every day, and resorted to ankle weights during our long spate of inclement weather and had to walk inside the house. I have resumed my Opdivo treatments for lung cancer and will have an update on pancreas and lungs end of February. As my surgeon said, I am blessed.

@alanbeavfan, you may interested in this discussion related to Retevmo (selpercatinib)

= Anyone with NSCLC have targeted therapy stop working?https://connect.mayoclinic.org/discussion/anyone-with-nsclc-using-targeted-therapy-had-it-stop-working/

How are you doing?

@alanbeavfan
I have/had acinar cell carcinoma of pancreas along with NSCAC of the lungs (diagnosed 2 years before) I don't think I have the RET mutation, at least not that any tests have found. Did 6 months of gem/brax chemo, no significant change. Did 5 SBRT treatments, tumor shrunk by almost 50% so was able to have Whipple 6 weeks ago. No chemo or radiation post surgery. Doing fairly well. Will get scans every 3 months.
I am continuing with Nivolumab immunotherapy for lung cancer. That has been successful for lungs, was stage 4 for lungs.

I have Stage 4 PACC with RET positive indication. I am looking for any others out there with this combo.

First line chemo was Fulfirinox of six infusions over 13 weeks. No response. Due to RET indication, second line chemo is Retevmo (Selpercatinib) and there is an initial positive response. AFP tumor marker is in the normal range and there is marked reduction in tumor sizes in both my pancreas (tail) and liver. I am on the maximum dose and have the common side effects of high BP and high blood glucose. Anyone else on Retevmo? Thanks!

@tkr66, I moved your questions about Pancreatic Acinar Cell Carcinoma to this existing discussion:

- Anyone have Pancreatic Acinar Cell Carcinoma? https://connect.mayoclinic.org/discussion/neuroendocrine-acinar/

I did this so you can more easily connect with other members with this type of pancreatic cancer like @lucanus @stageivsurvivor @56pan @gsterle @julieacklin @hroberts257 @kakalena and others.

You're asking great questions. You can also use the group search find answers to some of your questions about surgery.

You son is very young. It must've been shocking for both of you to hear the diagnosis of pancreatic cancer at 27 years of age. If your son would like to connect with other adults diagnosed with cancer, there is a monthly support group facilitated by Mayo Clinic that he can join (even if he is not a Mayo patient). They meet on Zoom on the first Thursday of the month. The next meeting is on Dec. 4. See more details here:
- Young Adult Cancer Support Group Meeting: Y.A. Me Too https://connect.mayoclinic.org/event/aya-adolescents-and-young-adults-support-group-meeting-y-a-me-too-1-0a38ed36/

Does your son live near you? Is he seeking care at a pancreatic cancer center of excellence? How are YOU doing?

My son was diagnosed in July 2025. He has had 9 treatments. He will complete a total of 11 treatments before surgery in January. His tumor is in his stomach but begins inside the pancreas and comes out the tail. Whipple surgery is not really an option.

I am reaching out to see if other people on this forum have:
1. been diagnosed with this rare form of pancan - Acinar Cell Carcinoma
2. what treatments did you do?
3. Who has had a successful distal pancreatectomy, splenectomy, and cholecystectomy? He is scheduled to have at least a partial in January but may need a total.
4. What can we expect going forward after surgery. His hopefully will be a partial so he won't be insulin dependent going forward.

Thanks 56span. I have heard of this reversal and will raise this with my oncologist regarding a transion to a PARP. Gemcitabine/Cisplatin has done me very well to this point, clearing many lesions in the liver and one large omental lesion. I hope to hear from more people re olaparib and rucaparib here.

@lucanus I was on Olaparib in a clinical trial at the NIH in MD earlier this year. Dr. Alewine was in charge but she's moved on and I saw a while back on this forum that someone had posted her new job location. Not at NIH. I have PACC and the Olaparib made very little progress against the cancer. One tumor visible on a PET scan on my liver. I was released from the study due to no progress. Here's what I remember being told. Olaparib is supposed to be effective with cancer patients with the BRCA2 mutation. Which my DNA test a few months earlier indicated I had. After I was released from the study I had to use the VA for oncology, chemo, etc. The VA onc. impressed me with his knowledge. After a couple weeks he put me on Gemcitibine/Abraxane. I asked him why he didn't put me back on Folfirinox which worked very well on a tumor on my pancreas and several lesions on my omentum. He told me, "Your BRCA2 mutation has reversed. You know longer have that mutation. I was confused as to why the Olaparib wasn't more effective, so I had another DNA scan done of tissue from an earlier laparoscopic biopsy on your liver tumor. Medicare wouldn't pay for it, but I got the VA to." The Gem/Abrax. shrunk the 2 remaining tumors enough that he had me see a radiation oncologist. I qualified and had 15 sessions in Aug. Last PET scan last month showed less hypermetabolic activity in both areas. They didn't glow as much. He told me sometimes it takes several months to see significant progress with rad. therapy. Next PET scan will be late Dec. I hope this information is useful and I wish you well. Good luck. There are many people on this forum who have much more knowledge on this issue. To them: please feel free to correct any obvious mistakes.

Seeking feedback from those on olaparib for pancreatic acinar cell carcinoma as I'm deciding between it and rucaparib. I'm aware of rare spectacular successes with both drugs but would like to hear more from anyone here
Craig

@stageivsurvivor hi, I read the trial report. We're you the only PACC patient? There seems no attempt to distinguish the trial group on the basis of pancreatic cancer type. I have PACC now in the liver and am thinking to go with rucaparib based on your story. Olaparib has its successes too, but it's trial with PACC patients has not been a great success.
Craig