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Grade 1 Non-functioning (NF) NET

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

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@pavlina60

Hello @matt2024 ! I too have pNET but with liver metastases. Had distal pancreatectomy ( with spleen and gallbladder removal) an am on Lanreotide/Somatouline 120 mg every 4 weeks. Even though I have some pancreas left my blood glucose is rising (~140 in the morning, A1C 6.6). It is also a side effect of my treatment. I try to walk daily and avoid carbs, no sugary 'treats' but still have elevated BG. I think on my next physical my PC will put me on medication for that :(. I have been diagnosed in December 2022, had surgery February 2023. Do you follow any specific diet? Btw, I also take Creon for digestion. Thank you! And yes - our lives are not done - just different and we are adjusting! Hugs! 💜🦓

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Replies to "Hello @matt2024 ! I too have pNET but with liver metastases. Had distal pancreatectomy ( with..."

Hi @pavlina60! It's great to hear from you about your journey. I have found that physical activity is the most helpful for me and do also follow a low carb diet (nuts, veggies, meat, etc. - I have also learned to love cauliflower in all of its forms - riced, mashed, etc.) The other thing that I found with Creon is that the fat content of the food can affect the glucose spikes - more fat = slower absorption and lower carb impact over time.

I would be surprised if your Doc would order a med for your A1C of 6.6. My endo's goal for me is to be 80% in range of 70-180 daily and 180 is about a 8.0 A1C so I would think you are doing great! If you have a CGM, perhaps you can experiment on food/activity level to dial in your target?