Connect
← Return to I have a neuroendocrine tumour in the small bowel and liver lesions
Discussion
I have a neuroendocrine tumour in the small bowel and liver lesions
Neuroendocrine Tumors (NETs) | Last Active: 4 days ago | Replies (61)Comment receiving replies
@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.
Replies to "@vinnie694 Mine are similar to both, Small intestines with liver mets, stage 2, grade 4, Ki-67..."
Connect
@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.