Anyone have Pancreatic Acinar Cell Carcinoma?

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

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

not good

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. 🙏🏻❤️🙏🏻

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.

@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?

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.

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 was diagnosed with Pancreatic Acinar Cell Carcinoma in June 2012 with the tumor 4cmx3cmx3cm on the head of the pancreas and in contact with the portal vein. The frequency of PACC is between 1-2% of all pancreatic cancers. A Whipple with portal vein resection was performed and I was restaged as IV with metastatic disease to the liver.

I did 46 cycles of chemo over 24 months every 15th day with no pause consisting of 24 cycles full dose Folfirinox of the original higher concentration and 22 cycles 5-FU/Leucovorin alternating in groups of six cycles to lessen peripheral neuropathy which was successful. At the end of the 24 months, nearly all liver Mets were gone and of two still visualized, was thought to be scar tissue.

At this point, I was the first (US) patient to enroll in the PARP-1 inhibitor Rucaparib (Rubraca) which is a biosimilar to Olaparib (Lynparza) to target the germline BRCA mutation I have. The cohort consisted of 19 having a germline or somatic BRCA1, BRCA2 or PALB2 mutation. At the conclusion of the trial, it was determined I had a complete response and the only one of the 19 to remain N.E.D. from the RucaPANC trial. I am the longest former pancreatic cancer patient in the world on Rubraca at 9.5 years. For me the PARP is well tolerated. I was on full dose for exactly 6 years before anemia manifested and I had one dose reduction. I still have mild anemia and take a pause of 6 weeks every six months to give the bone marrow a rest and recover.

Other than the anemia, it causes me a transient increase in serum creatinine and elevated eGFR. With each pause, those results return to normal. A small percentage of patients developed Myelo Dysplasia Syndrome /Acute Myelogenous Leukemia which is featal. In the patients where this happened, they were having difficulty tolerating the PARP early in into use. When I developed anemia after six years, I requested having a bone marrow aspirate done as a precaution. Only RBC’s were affected and not WBC’s or platelets. In addition, genetics showed no abnormalities of precursor cells in the BM, ruling out MDS/AML. I have an excellent quality of life and was declared N.E.D. In 2016. Many oncologists following my case are of the opinion I achieved cure in 2014 and it was the aggressive treatment with Folfirinox that is credited with wiping out minimal residual disease.

I am presented as patient #8 in the graphs of the publication that resulted from the clinical trial.

RucaPANC TRIAL
https://ascopubs.org/doi/full/10.1200/PO.17.00316

@56pan, I hope you saw the helpful post from @stageivsurvivor. Congrats on being accepted into the clinical trial.

Additionally, I'm tagging a few other members who have experience with Olaparib (Lynparza) like @ncteacher @gardenlady1116 @russelltturner @asingh90 @pendesk8 and others.

When do you start the trial?