Anyone have Pancreatic Acinar Cell Carcinoma?
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.
"The exercise helped me in tolerating the aggressive amount of chemo and the duration of treatment of 2 years." I have no doubt you're right about that, sir. My exercise routine had nothing but a positive effect on me during my chemo treatments. Thanks for your reply.
Hello - one year ago August of ‘23 I was diagnosed with Acinar Pancreatic Cancer with tumors on my pancreas. Fortunately for me it was detected early and I had surgery last September a distal pan to remove 1/2 my pancreas and spleen. The cancerous tumors were removed successfully however the cancer had metastasized to my liver (3 tumors detected). I started chemotherapy last November - gemcitabine and cisplatine (platinum based) also genetic testing revealed that I have the BRAC2 gene mutation. BRAC2 is known to cause cancer in women and men. After 12 rounds of chemo I responded well and the liver tumors shrunk to 1/2 their size. With this great response I am now on an oral PARP inhibitor “Lynparza” which targets the BRAC2 mutation and I am seeing (CT scans) good results, tumors continue to show reduction with no spread or new tumors. So one year later I am doing well and cannot thank my loving wife, Kim as she has been by my side as has my family. My Cleveland Clinic care team has been excellent and feel I am in good hands. I am staying strong and staying in the fight because we fight we win.
@gsterle, what a hopeful and helpful message. Will you be on the oral PARP inhibitor Lynparza as a maintenance therapy?
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.
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.
My husband was diagnosed Oct 11 wo24 with Acinar cell pancreatic cancer of the head
Recently been diagnosed with acinar cell carcinoma of the pancreas. Has anyone had a similar diagnosis? If so, what kinds of treatments were recommended ?
@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?