Anyone have Pancreatic Acinar Cell Carcinoma?

Posted by thawk32 @thawk32, Jan 16, 2023

I looking to see if anyone has been diagnosed with Acinar cell pancreas cancer. My biopsy from Dana Faber in Boston had my cancer type Neuroendocrine/Acinar. The Acinar cancer is very rare.
I was hoping to connect with someone that has experience with Acinar cell cancer of the pancreas.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

lucanus | @lucanus | 54 minutes ago

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.

56pan | @56pan | 2 hours ago

In reply to @lucanus "Seeking feedback from those on olaparib for pancreatic acinar cell carcinoma as I'm deciding between it..." + (show)

@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.

lucanus | @lucanus | 21 hours ago

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

lucanus | @lucanus | 23 hours ago

In reply to @stageivsurvivor "I was diagnosed with Pancreatic Acinar Cell Carcinoma in June 2012 with the tumor 4cmx3cmx3cm on..." + (show)

@stageivsurvivor

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

Jump to this post

@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

Colleen Young, Connect Director | @colleenyoung | Feb 12 4:59pm

In reply to @kakalena "Recently been diagnosed with acinar cell carcinoma of the pancreas. Has anyone had a similar diagnosis?..." + (show)

@kakalena, I moved your questions about treatments for acinar cell carcinoma to this related discussion:
- Anyone have Pancreatic Acinar Cell Carcinoma https://connect.mayoclinic.org/discussion/neuroendocrine-acinar/

I did this so you can read previous posts and connect with members like @56pan @stageivsurvivor @gsterle @julieacklin @hroberts257 who have a similar diagnosis.

Kakalena, what treatment path has been recommended for you?

kakalena | @kakalena | Feb 1 11:28am

Recently been diagnosed with acinar cell carcinoma of the pancreas. Has anyone had a similar diagnosis? If so, what kinds of treatments were recommended ?

hroberts257 | @hroberts257 | Dec 20, 2024

My husband was diagnosed Oct 11 wo24 with Acinar cell pancreatic cancer of the head

julieacklin | @julieacklin | Dec 17, 2024

Yes! I have Acinar pancreatic cancer stage 4, metastasis in lymph nodes. I was diagnosed in Oct 2023. I had 4 months of Fulfirinox, then Fulfiri- no oxaliplatin -for 8 months. I had 5 good scans with some shrinkage each time but my last one showed significant progression which was very discouraging. I was hoping to get in a trial but last spot was taken so I’m going back on fulfirnox this week. I’m hoping to get in trial as soon as a spot available. I have switched doctors.
There is an Acinar group on Facebook you should join.

gsterle | @gsterle | Nov 8, 2024

In reply to @colleenyoung "@gsterle, what a hopeful and helpful message. Will you be on the oral PARP inhibitor Lynparza..." + (show)

I am currently taking 250mg X 2 daily for the past 5 months with good results (tumors are shrinking and nothing new) and minimal side effects (fatigue and dry mouth). I have a good appetite, try to exercise at least 30 minutes daily and sleeping well. I do have some anxiety issues at times. Currently I have CT scans every 3 months and blood work with DR consult every 2-3 weeks. So I am 14 months post surgery and staying strong and hopeful.

Colleen Young, Connect Director | @colleenyoung | Nov 8, 2024

In reply to @gsterle "Hello - one year ago August of ‘23 I was diagnosed with Acinar Pancreatic Cancer with..." + (show)

@gsterle, what a hopeful and helpful message. Will you be on the oral PARP inhibitor Lynparza as a maintenance therapy?

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