NET's and possible liver transplant discussion

Posted by kim1965 @kim1965, Jul 18 8:21pm

Today, during our meeting with our NET cancer team, we were reviewing the results from CT, MRI, and PET scan, and in general we are in good shape with no new cancer growth other than what is still left in her Liver. For review to those not familiar with my wife's case. Diagnosed with NET, April 2022, completed 9 rounds of CAP/TEM, been doing monthly injections of Lanreotide still. She had surgery on 3/1 of this year, having the tail of her pancreas removed, spleen removed, gall bladder, and debulk as many tumor on her liver as possible. She had all the 90 day follow-up tests, and she is doing ok, with the diabetes being more of a issue controlling right now day to day. My question is the options our Cancer Team is recommending, which is to proceed with PRRT treatment, since we have the remaining cancer in her liver as the lowest level since originally diagnosed. The 2nd choice was a pill form of a drug similar to chemo, but not chemo. The 3rd choice, just so we start thinking about it in 2-3 years, is the possibility of a Liver Transplant. This option I have never heard discussed online or in this forum. I was wondering if anyone has chosen this option and if so how is it going? We plan on proceeding with the PRRT option, but I'm still surprised by the transplant discussion, and wondering if anyone has heard of that or made that choice?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

The treatment plan that was discussed with me in 2018 for my NETs was Whipple surgery, resect and ablate liver lesions then if I remained stable for 3-5 years with only disease in my liver then consider doing a liver transplant. Haven’t discussed the transplant at all as I was more concerned with the immediate surgery and recovery. One of my concerns that I have thought about asking about with regards to a transplant if I was ever at the point where it was actually a consideration was do with the effects of the immune suppressing medications that maybe needed so the transplant isn’t rejected by your body. How would the medications affect NETs, would it make them more likely to spread within your body if there were some small NETs remaining that hadn’t been detected on any imaging yet? I have no idea as I haven’t needed to have that discussion. I think Steve Jobs had a liver transplant for NETs in 2009 and passed in 2011. I know every case is different so I too would be interested in knowing if anyone has had a liver transplant for NETs and how they are doing.

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