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DiscussionAnyone have Pancreatic Acinar Cell Carcinoma?
Neuroendocrine Tumors (NETs) | Last Active: Nov 27 3:08pm | Replies (24)Comment receiving replies
Replies to "Seeking feedback from those on olaparib for pancreatic acinar cell carcinoma as I'm deciding between it..."
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@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.