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Anyone have Pancreatic Acinar Cell Carcinoma?
Neuroendocrine Tumors (NETs) | Last Active: 7 hours ago | Replies (27)Comment receiving replies
I have Stage 4 PACC with RET positive indication. I am looking for any others out there with this combo.
First line chemo was Fulfirinox of six infusions over 13 weeks. No response. Due to RET indication, second line chemo is Retevmo (Selpercatinib) and there is an initial positive response. AFP tumor marker is in the normal range and there is marked reduction in tumor sizes in both my pancreas (tail) and liver. I am on the maximum dose and have the common side effects of high BP and high blood glucose. Anyone else on Retevmo? Thanks!
Replies to "I have Stage 4 PACC with RET positive indication. I am looking for any others out..."
@alanbeavfan, you may interested in this discussion related to Retevmo (selpercatinib)
= Anyone with NSCLC have targeted therapy stop working?https://connect.mayoclinic.org/discussion/anyone-with-nsclc-using-targeted-therapy-had-it-stop-working/
How are you doing?
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@alanbeavfan
I have/had acinar cell carcinoma of pancreas along with NSCAC of the lungs (diagnosed 2 years before) I don't think I have the RET mutation, at least not that any tests have found. Did 6 months of gem/brax chemo, no significant change. Did 5 SBRT treatments, tumor shrunk by almost 50% so was able to have Whipple 6 weeks ago. No chemo or radiation post surgery. Doing fairly well. Will get scans every 3 months.
I am continuing with Nivolumab immunotherapy for lung cancer. That has been successful for lungs, was stage 4 for lungs.