Liver Transplant to Treat NETs

We have already had the primary removed in March 23, along with gall bladder, spleen, and debulked as many tumors as they could get. We are in the middle of 4 PRRT treatments to hopefully further knock down the remaining tumors in liver. The only way the transplant happens if we pass all the protocols, meaning the liver is the only organ to still have NET, and are healthy enough and of course a donor liver. We also still have a lot of questions for our team, just trying to find as much info from other NET patients that have experienced the same decision. Thank you so much for your feedback!

TY. Interesting my oncologist didn't comment on replacing my liver as I have a similar situation to what you described. However, she did say that removing NETs in the Small Intestine does not cause them to spread. She said this happens with some cancers but not this type.

I think we are all given a variety of answers depending on? (not sure what), but I brought up the transplant option to my surgeon. I have the primary in my small intestine and I was told the focus is on the liver and they don't want to touch the sm. intestine (unless it grows). I am expecting to have an operation in the next few weeks and will post my experience. As I am with a team (Clinical Trial), I have 5 surgeons who will be consulting with each other.

It just makes me nervous there is so few cases that I have found that a liver transplant has occurred. We will have more opportunities to discuss that with our team in the coming months. More to follow soon. 🙏

Yah, I started Somatulin Depot Feb 15, 2023. We will monitor the liver NET via MRI every 3months. However the primary in my SI caused a full blockage when my SI wrapped around it in April. Therefore I had to have SI resection, the siNET and GB removed via emergency surgery. So not really proactive but reactive. But I feel much better and gained 20# since.

Hello, how long since you were originally diagnosed with NETs? I am trying to determine what comes next since it has spread to my liver. Liver failure and shut down? How long? I am such a need-to-know person that this unknown is causing my anxiety to go off the charts. I was just diagnosed in July when they removed a tumor from my intestine and found it had spread. I am going for my second injection of Lanreotide this Friday.
Any information is appreciated.
Thank you
Joy

Hi Joy, each case of NET is different. I can share our case to give you a better set of questions to ask your team or doctors. My wife was diagnosed in April 22, with mass on on pancreas and metastasis to liver with too many tumors to count. Our team immediately started CAP/TEM and Lanreotide for 9 months, reduced all tumors in both areas by 80%, which allowed for mass on pancreas to be removed, spleen removed, gall bladder removed, and as many tumors as they could get were debulked. We now are about to start 2 if 4 treatments of PRRT, with the hope of knocking down the remaining tumors in the liver to almost nothing. If that occurs, we are considered a liver transplant, to hopefully take out the remaining NET in liver. So each case has its own story, with different paths, we all are here to help you through this journey, please ask any questions you need help on. We all got this.

Hi Joy (good positive name)
I believe your primary source is in your sm. intestine (same as mine), so you might relate to my experience. I am in Canada and I stepped out of the medical system and elected to pay for an MRI (just a random check ) in late March of this year. It was showing a metastasis to my liver (a number of 'lesions' (tumors). I was told it was slow growing and they would put me in treatment (eventually). I felt otherwise - 2 weeks later, it was no longer slow growing and I ended up in emergency and was put on hydromorphone and my Oncologist jumped to attention.
I am on Lanreotide (started with every 4 weeks, but changed to every 3 weeks). I am now waiting for my surgical team to decide on the best way of treating the liver as this is where the rapid growth is. The Lanreotide is slowing down the growth, but not stopping, nor reversing it. I feel reasonably well, but the key is to arm yourself with knowledge and ask a lot of questions, pay attention to your symptoms. I follow RonnyAllen.NET (he has been living with the same for over 13 years and has a lot of info). LACNETS and of course Mayoclinic connect. Be brave, be aware, be in control. 💕

Thank you for the information - it was helpful. I am learning as I go and this site has been a great source of information. Good luck with your journey!

And to you also, let us know how we help you. You got this!