Anyone have Pancreatic Acinar Cell Carcinoma?

I have this disease and had my last chemo infusion was 3 wks. ago. They lasted for 6 months. Folfirinox. The cancer was discovered on Aug. 27 last year. The tumor in the 1st CT scan measured 9 cm long by 5 cm wide on the head of the pancreas They also noticed lesions on my omentum and 3 lesions on my liver. A laparoscopic biopsy determined all the lesions to be cancer. A CT scan on Jan 4 and earlier this month showed no evidence of the tumor and 1 remaining of the 3 lesions on my liver. No evidence shown on the omentum. My question is this: This acinar cell type of disease is only .5 % of all pancreatic cancers. I found a clinical study by the NIH in Bethesda, MD and they have accepted me. I have the BRCA2 genetic mutation also. They are going to put me on 2 pills a day of Olaparib. I'd be very grateful to hear of any side effects from anyone on this forum who has experience with this drug. Thank you for listening and any useful info.

I have acinar cell pancreatic cancer. I've been on chemotherapy, Folfirinox, since late Sept. of last year. I've been lucky, as Folfirinox has several possible bad side effects, to only be bothered by neuropathy. Tingling of the fingers, bottom of the feet, and the back of the throat with exposure to cold. Daily hard exercise has helped me more than anything with the chemo.

@thawk32 I'm tagging @stageivsurvivor who also has pancreatic acinar cell carcinoma (PACC) and wrote more here: https://connect.mayoclinic.org/comment/726298/

How are you doing?

Hi,

I don't have any direct info, but I remembered reading something about it on reddit and I found it again. There are at least two other people in the discussion, plus a mention of a Facebook group. Here's the link:
https://www.reddit.com/r/pancreaticcancer/comments/12tc85c/so_this_is_a_bit_weird/
And here's another discussion from reddit:
https://www.reddit.com/r/pancreaticcancer/comments/usc6p7/acinar_cell_carcinoma/
And I *think* this is the link to the Facebook group:
https://www.facebook.com/groups/218900321971851
Anyway, good luck! Wishing you a happy outcome and that you find a good community of support.

I’m looking to anyone who has been diagnosed with Acinar Pancreatic cancer. It a rare form of Pancreatic cancer so I’m having no luck with contacting with someone with this type of PC .
Thanks in advance and god bless all you PC warriors. 🙏🏻❤️🙏🏻

not good

No mine was a neuroendocrine carcinoma utorial and the cysto (bladder). I wish there was something that I could tell you about this cancer that you have but the rarity of it chances are of anybody having something of that nature and maybe slim to none but you never know one of these circumstances. But one good plus that I could tell you is that we just heard the other day that people have been being approved for Long haul covid now we don't know if it's going to be a temporary disability or if it's going to turn into a long disability however they do that I'm not sure but here's looking up

I met with my oncologist today and cleared up the confusion. My cancer is Acinar Pancreas Cancer. I thought I had a combo along with Neuroendocrine.

Acinar cell carcinoma (ACC) of the pancreas is a rare, malignant neoplasm that accounts for 1%-2% of all pancreatic neoplasms [1]. Acinar cells are the functional exocrine units of the pancreas and the carcinoma arises from malignant transformation of these cells.
If anyone has this cancer type please reach out. Thanks