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Life expectancy with NETs and lifetyle as it progresses
Neuroendocrine Tumors (NETs) | Last Active: Jun 1, 2023 | Replies (18)Comment receiving replies
I also have insulinomas. . . Diagnosed originally in 2015 with 2 tumors in the pancreas, 2017 found 9 more in the pancreas @ Mayo, 2023 the tumors metastasized to the liver - undetermined #. I have had a modified Whipple and a distal pancreatectomy/splenectomy. Currently, I am on Sandostatin (octreotide) 30 mg every 28 days and 50 mcg short acting as needed to control the blood sugars. No conversation on life expectancy but I feel good (other than when hypoglycemic) and really no other issues other at this point. I have a great endocrinologist at Mayo that keeps close tabs on my progress and a great oncologist here in NC. My motto - you have 3 choices - give up, give in or give it all you’ve got! I am giving it all I’ve got. Best wishes to all of you in your journey - as all NET journeys are unique!
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Hi @ahtaylor -- I love your motto! I have always loved the "Never Give Up" poster and use it as my inspiration. A picture is worth a thousand words and the poster says it all.
I take octreotide as well for lung NETS/DIPNECH to control symptoms and slow growth. It has been great for symptoms, but actually caused high blood sugars for me. Well worth it though! Glad you're feeling well and ready to keep enjoying life! 🙂