Immunotherapy (Ipilimumab & Nivolumab) for NETs: Any experiences?

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.

@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

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.

I think @asingh90 @asingh90 @sammy15 @max326 may also have some experience to add to this discussion.

@k8lyn23, how are you doing on the nivolumab (Opdivo) + ipilimumab (Yervoy) treatment?

Hello, my Mom is currently on a clinical trial involving a cancer peptide vaccine and nivo and ipi. She has advanced pancreatic cancer arising from an intraductual oncocytic papillary neoplasm (IOPN), which is super rare and not the regular pancreatic adenocarcinoma. What we have learned is that these drugs are still fairly new, especially in treating cancers other than melanoma and lung cancer. There is also no one "regular" response pattern because immunotherapy can sometimes take months to work on a patient. For example, in my Mom's case, the first six weeks of treatment (two infusions) we felt like she was getting worse, but then right after six weeks we felt like her symptoms got markedly better. However, the scan on week 8 (after three infusions) showed a mix of stability in some areas and growth in the others. Because her symptoms were getting better, the doctor decided to continue to treat for two more cycles and do a scan on week 14. It is possible that the progression seen was pseudoprogression, which is basically t cells infiltrating tumors to make them look bigger on a scan or that her body took a while to generate an effective response to the cancer because the tumor burden was so high to begin with. No one knows for sure. We will have more clarity after the next scan, but she is definitely feeling better than she was a few months ago, which we are very grateful for. In terms of side effects, her main one was fatigue and a little bit of nausea, but it was very manageable and got better after the 72 hours following the infusion. The doctor said the side effects are definitely more tolerable than chemo for most patients. The doctor did mention that there are more serious, but rare, autoimmune side effects that can happen, but thankfully (knock on wood), she doesn't have any of those at the moment.