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.

@stageivsurvivor

During the 24 months of Folfirinox treatment, I walked between 3-5 miles. I worked all through my treatment requiring a daily roundtrip commute of 4 hours 20 minutes minimum. At work I walked the stairwell of 6-8 stories several times a day as well as walking up the escalators and stairs of the NYC subway and an 8 block walk part of my commute.

Just prior to my diagnosis, I was riding 50 mile segments for speed and endurance 2-4 mornings each week for a total of 100-200 miles/week.

Currently walk and ride my bike in nice weather. I have a stationary bike to ride in inclement weather. The exercise helped me in tolerating the aggressive amount of chemo and the duration of treatment of 2 years.

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"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.

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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.

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@gsterle

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.

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

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@colleenyoung

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

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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.

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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.

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

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

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@kakalena

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

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@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?

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