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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)Comment receiving replies
Hello @lindabees and welcome to the NETs support group on Mayo Connect. I appreciate your post and the encouragement you offered, especially about the importance of getting a NET specialist. Here is another link with NET specialist worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. If anyone is seeking a consultation with a Mayo NET specialist, here is a link with information about a Mayo appointment, http://mayocl.in/1mtmR63
It sounds as if your husband has done well since his diagnosis of P-Net. If you are comfortable sharing more, I'm wondering what type of treatments he has had. Any surgeries or other chemotherapies? What about diabetic problems?
I look forward to hearing from you again.
Replies to "Hello @lindabees and welcome to the NETs support group on Mayo Connect. I appreciate your post..."
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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.