Wondering if we are making the right choices in our NET fight.

Has your team discussed a liver directed therapy such as embolization? There are 3 types: bland, chemo, and radioembolization.
There’s also now histotripsy. I think I would go down that road before considering a transplant.

Thanks for those suggestions. I have investigated Histotripsy right after it was approved by the FDA in the fall of 2023, in the hopes we might be able to use it. As soon as a few months ago, our medical team, who participated in the trials of histotripsy, could not reccomend it in our case, being so new, and not having enough data on it over time. The first three you mentioned, we have done 2 of the 3. We also had 2nd opinions from Mayo, and Dr. Liu in Denver, on the transplant option. We appear to be a rare case that this is an option, we were able to speak to a transplant patient from over 8 years ago, and got some good information along with our medical team, to proceed. I'm just trying to find more than that one person who had it and had NET, to get any feedback or suggestions as it may be coming up in days to weeks for my wife.

Wondering How old is your wife? How big and how many tumors? How is the Nets effecting the liver and her? My Dr. Asked if I was in any pain. I am not but are others? Thank you

She is 59 years old, still works part time. She started with too many tumors to count when originally diagnosed in 2022. She was Stage 4, but with a slow growing tumors. After chemo (pills), surgery to remove primary on pancreas, remove spleen, and debulk some of the tumors they could, we then moved to 3 cycles of PRRT, which PET scan showed that she was roughly 80% less tumors than started. I believe her largest tumor was about 2 x 4 cm. She currently has about 8-10 tumors in her liver only still that are stable for now. She was just added to the liver transplant list that we have decided to do after many 2nd opinions. It is a rare option for NET patients, but we trust our medical team. To better answer your questions, she is a type 1 diabetic, which truthfully is more of issue on a daily basis, since the bottom tail of the pancreas was removed. My best advice you will hear from many in this forum, whatever you do make sure that it includes a NET specialist, as we even found out in the beginning, NET is rare, that even our oncologist only had 2 cases in his 40 year career, so he immediately referred us to a multi-disciplinary team at Froedtert Hospital that included a NET Specialist, which has given her a great chance to managed NET for hopefully many years! We all got this, and let us know how we can help you.

Curious to know if anyone on your team has talked about the possible implications of transplantation and the affects of subsequently needing to use immunosuppressive drugs? Will needing to use immunosuppressive drugs dampen down the bodies natural ability to fend off the possible proliferation of cancer cell growth? Steve Jobs had a liver transplant and I often wondered if this was another wrong decision in his treatment journey?
I am just curious.
Good Luck in whatever decision you make!

She is 59 years old, still works part time. She started with too many tumors to count when originally diagnosed in 2022. She was Stage 4, but with a slow growing tumors. After chemo (pills), surgery to remove primary on pancreas, remove spleen, and debulk some of the tumors they could, we then moved to 3 cycles of PRRT, which PET scan showed that she was roughly 80% less tumors than started. I believe her largest tumor was about 2 x 4 cm. She currently has about 8-10 tumors in her liver only still that are stable for now. She was just added to the liver transplant list that we have decided to do after many 2nd opinions. It is a rare option for NET patients, but we trust our medical team. To better answer your questions, she is a type 1 diabetic, which truthfully is more of issue on a daily basis, since the bottom tail of the pancreas was removed. My best advice you will hear from many in this forum, whatever you do make sure that it includes a NET specialist, as we even found out in the beginning, NET is rare, that even our oncologist only had 2 cases in his 40 year career, so he immediately referred us to a multi-disciplinary team at Froedtert Hospital that included a NET Specialist, which has given her a great chance to managed NET for hopefully many years! We all got this, and let us know how we can help you.