1. < Neuroendocrine Tumors (NETs)

Immunotherapy

Posted by k8lyn23 @k8lyn23, 6 days ago

Diagnosed with high grade(3) neuroendocrine carcinoma. Irgun duodenum. Mets pancreas and many in liver. Did 4 cycles of carboplatin and etopiside chemo in hope to shrink but shows progression. (Inoperable) and negative PET donotate so cannot have PRRT. Oncologist next steps is immunotherapy (Ipilimumab & Nivolumab) since instead of Captem or forfox.
Has anyone experience immunotherapy before with this disease?

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emma0444 | @emma0444 | 6 days ago

My dad has high grade NEC primary pancreas with liver mets. Showed progression on carbo/etopo and with the tumor growth has been unable to eat so has gotten pretty weak. He has had one dose of niv/ipi. Has a low chance of working but if it does it could potentially mean close to full recovery. I have seen many success stories. There is a very helpful high grade neuroendocrine carcinoma support group on facebook also. Best wishes.

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k8lyn23 | @k8lyn23 | 6 days ago
In reply to @emma0444 "My dad has high grade NEC primary pancreas with liver mets. Showed progression on carbo/etopo and..." + (show)
@emma0444

My dad has high grade NEC primary pancreas with liver mets. Showed progression on carbo/etopo and with the tumor growth has been unable to eat so has gotten pretty weak. He has had one dose of niv/ipi. Has a low chance of working but if it does it could potentially mean close to full recovery. I have seen many success stories. There is a very helpful high grade neuroendocrine carcinoma support group on facebook also. Best wishes.

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@emma0444 did he experience any negative side effects that you can say? Sounds like your dad is going through the same as mine. Fingers crossed for both

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emma0444 | @emma0444 | 5 days ago
In reply to @k8lyn23 "@emma0444 did he experience any negative side effects that you can say? Sounds like your dad..." + (show)
@k8lyn23

@emma0444 did he experience any negative side effects that you can say? Sounds like your dad is going through the same as mine. Fingers crossed for both

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I don't think he has experienced any new crazy side effects from the immunotherapy, but he was already really weak from the chemo and tumors and his own GI problems so it is hard to say if anything got worse. He is fully bed ridden and in quite a bit of pain but I don't believe that is immunotherapy related. Immunotherapy can take a little while to tell if it is working so we are in the wait it out period right now.

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