← Return to Grade 1 Non-functioning (NF) NET

Discussion

Grade 1 Non-functioning (NF) NET

Neuroendocrine Tumors (NETs) | Last Active: Jun 11 1:56pm | Replies (45)

Comment receiving replies
@hopeful33250

Hello @matt2024 and welcome to the NETs support group on Mayo Connect. I appreciate you sharing about your history with pNETs. Your comments offer encouragement and a great perspective.

It sounds like you are doing well, now. Are you still using enzymes? Any problems with digestion or sugar levels?

Jump to this post


Replies to "Hello @matt2024 and welcome to the NETs support group on Mayo Connect. I appreciate you sharing..."

Hi @hopeful33250 - nice to meet you. I am doing well. Most days are good - some are challenging but isn't that the truth about life in general. 🙂 I will use enzymes for the rest of my life - I use 3 x 36,000 Creon with meals and one with snacks. Aside from being expensive (my first 90 day fill was $2,700 before I hit my deductible), they really haven't created any problem for me. I am consistently in the mid 6's for A1C and attribute that to diet, exercise and my CGM/pump combo. The biggest thing for me is to factor in carbs, fat content, and insulin and time it right. It's a bit of an art form but can be managed. Highs I knock down on the elliptical and lows I use juice for a quick boost.

I was devastated when I learned of the pNets but looking back (thought I was a goner), I took it one day at a time and let the doctors help me manage it.