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NET on liver: Question about treatments when no symptoms
Neuroendocrine Tumors (NETs) | Last Active: Oct 31 11:54am | Replies (28)Comment receiving replies
Thanks for your reply. Have you been getting MRI's for the past 1 1/2 years to monitor? How often? Do you know what the dose is of the Octreotide injection you receive? Do you know what your KI-67 score was from your biopsy?
Dr I saw today recommends I start Octreotide due to my tumor grade 2 and KI-67 of 6-8%.
I am trying to understand if there is a predictable time for the Octreotide treatment to work prior to the tumor learning to resist it and start growing. So would there be a benefit to waiting till the tumor started to grow to start treatment. Where are you being seen for your treatment? Thanks very much. Hope the MRI was helpful as you make decisions.
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My first MRI was Dec 2022 when I was diagnosed. PET Scan was January 2023 to determine the source. Started Lanreotide injections Feb and March. They didn’t help my carcinoid symptoms so switched to ocreotide on April. Next MRI was June 2023, Nov, 2023, March 2024, June 2024 another PET scan August 2024 and my last MRI October 2024. So kind of started every 5 months. Then more frequent Ocreotide worked great on eliminating my carcinoid syndrome, and stopping the spread of any new tumors but there are a few that we continuing to grow.. I have 16 tumors on my liver. My KI-67 is 6.6%. I receive 2 injections every 28 days to total 60 mg. I am seeing Dr Starr at Mayo Jacksonville Florida. He is a NET specialist.. My last MRI still showed a few growing so we decided to do the Lutathera treatments starting November.. Hope this helps you.. please don’t hesitate to ask any questions. This is definitely an emotional journey, and I’ll be starting the next adventure soon.. Never lose hope!