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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 1 day ago | Replies (1298)Comment receiving replies
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.
Replies to "I was diagnosed with pancreatic cancer on Aug. 27, (my birthday, mind you), of 2023. 6.1..."
I was diagnosed in 2012 with stage IV acinar cell carcinoma. This type by itself does not show elevation in CA19-9 by itself as acinar cells do not secrete this biomarker. A rise in CA19-9 may have been the result of an inflammatory process secondary to your PACC tumor.
I also have a germline BRCA2 mutation and after 24 months of more aggressive treatment with Folfirinox beyond what is done for standard of care for which I had to advocate for, I was the first pancreatic cancer patient in the US to enroll in the RucaPANC clinical trial testing a PARPi inhibitor called Rucaparib (Rubraca) which is a biosimilar to Lynparza. By the conclusion of the trial, I had a complete response to the PARPi and was allowed by the FDA to continue on it as it as an application for FDA approval has not yet been made.
I am the longest former pancreatic cancer patient in the world on this PARPi for maintenance monotherapy at 9.5 years and have been declared not just N.E.D., but cured of metastatic PACC and thriving 11 3/4 years after my diagnosis.
That is great news! I am starting chemo 3/4 for similar findings. I am going to Moffitt and very interested in clinical trails vs. Folfirinox or the new cocktail that was approved by the FDA this week. I am concerned about quality of life during chemo as I am a widow and right now have no symptoms.
Has anyone else spoken with their oncologist about NALIRIFOX? Or The MRNA Vacine? They all seem to want to stay with the “protocol”.
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@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/