I have a neuroendocrine tumour in the small bowel and liver lesions

@tgsenn70

Greetings! I went through the PRRT in early 2024. It involved 4 sessions over 8 months. The first session began at 7:30 AM and I was released at 3:00 PM, so it took all day for the infusion. The remaining 3 sessions were the same. I was told that I could not ride in the same vehicle with anyone so I drove solo to and from the treatment center. Definitely take along a good book or something to occupy your time, including food for lunch. I was told I could not sleep in the same bed as my spouse, nor could I use the same bathroom. This lasted for 5-7 days but I went 8 days to prevent exposure. I couldn’t be within 6 feet of anyone for this time as well. The results were successful for at least a while, up to now anyway. I was a bit tired for a day or two with each infusion. I have been receiving Lanreotide injections monthly for about two years. Initially, I received Octreotide injections monthly. It will be 6 years in January since I was diagnosed. I am 67 and very active so I’m very positive that I’ll be around for a while longer. Early on in treatment I was advised that being overweight was a risk factor, so I purposefully lost 46 pounds and feel better for doing so. I wish you the very best in this journey…. Ron

@mhcohan
NETs specialists are few and far between. I'm not sure what part of the country you live in, but getting a consultation with a NET specialist right at the beginning of diagnosis and treatment is very important. @californiazebra might be able to tell you how she found a lung NET specialist.

Mayo Clinic has NET specialists at all three of its locations. Here is a link with information about obtaining a consultation with Mayo http://mayocl.in/1mtmR63.

If, for any reason, you cannot be seen at a Mayo facility, here is a listing of NET specialists worldwide, with U.S. doctors listed first (from the Carcinoid Cancer Foundation website).
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Yes, asking the surgeon and the oncology team about their experience in treating NETs is undoubtedly a good idea as well. However, a NET specialist is still the best. NETs are a rare form of cancer and can best be treated by a specialist in the field. They tend to know about the best treatment options.

Hello @rschweer and welcome to Mayo Clinic Connect. I appreciate you posting about your NETs journey. Your post provided the needed information about PRRT, but it also provided a glimpse into NETs treatment as well as your positive attitude.

Your six years of treatment seemed to have served you well. It is great that you have remained active. Losing 46 pounds was quite the accomplishment. Did you find it challenging to lose that much weight? How long did it take you to accomplish that goal?

@vinnie694
Mine are similar to both, Small intestines with liver mets, stage 2, grade 4, Ki-67 5.4%. Taking Octreotide every 28 days. Feeling good! NET specialist suggested I add everolimus if symptoms change. Oncologist doesn’t feel it’s necessary right now, tumor is less than 1cm. Have my 3 month scan 12/1 & hoping things are still stable. Not looking forward to taking everolimus or PRRT, I have stage 3 CKD so hoping to hold off on both for a while.

@fraaseo
I am also Stage 2, Grade 4 small intestine metastasized to my liver with multiple tumors, all sizes. NETs discovered 2.5 years ago.
I am on Everolimus (as a support for my 4 week -2 shot (180) mg. of Lanreotide and it is working well for me. I was told it would be a bridge until I can start the Clinical Trial of Alpha PRRT. The Beta PRRT caused my tumors to quickly grow.

I hope you continue to feel good and monitoring is so important as we all express differently - Zebras.

@ricki8: & @frasseo: Following you with much interest as to which Osteo drug to choose after 12 months of Evenity. It’s a difficult decision! dbamos1945

@dbamos1945

I found more info re: Everolimus thanks to A.I.