Anyone have Pancreatic Acinar Cell Carcinoma?

@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.

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.

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.

@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?