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Found PNET on tail of pancreas but told it’s nonfunctional

Neuroendocrine Tumors (NETs) | Last Active: Jan 14 2:54pm | Replies (97)
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@lindabees

I wouldn’t mind at all but it’s lengthy 😁
2008-At Stanford Specialists:Distal pancreatectomy with splenectomy
2009-Began Sandostatin/lanreotide.
2010- Entered captem trial. Stopped after 3 months as no reduction, but stability
2010-Switched to specialist at Cedar Sinai and Dr Wolin:
Bi-lobar Liver radioembolization (hugely successful)
Began lanreotide
2013-Everolimus (stablility achieved)
2016-Cyber knife (lymph node
Discontinued lanreotide and everolimus
2016-2020 No treatments of any kind with continued stability
2021-Progression. Switched care to specialist at Mayo Phoenix due to relocation
Started bi-weekly lanreotide
2022-progression. Went back to monthly lanreotide
Started captem
2023-50% tumor reduction, now stability. Discontinued temodor due to 14 months completed and need to reduce risk of bone marrow disease, etc. Will continue on capcetibine.

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Replies to "I wouldn’t mind at all but it’s lengthy 😁 2008-At Stanford Specialists:Distal pancreatectomy with splenectomy 2009-Began..."
lindabees | @lindabees | Dec 11, 2023

Also- he did develop mild diabetes after the pancreas surgery. The use of lanreotide has contributed further to it. However the everolimus also worsened it during his time on that therapy and made it challenging to control. Once he discontinued that, things improved to the point that it is well controlled with metformin

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