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Grade 1 Non-functioning (NF) NET
Neuroendocrine Tumors (NETs) | Last Active: Jun 11 1:56pm | Replies (45)Comment receiving replies
Hi @beaglebass - just joined this group today and noticed your post. I was diagnosed with MEN1 back in 2019 after an incidental finding of 5 pNETs. I ended up getting a total pancreatectomy with the associated removals (spleen, gall bladder, etc.) The adjustment was a little different for me as you become a fragile diabetic on insulin and need to use enzymes for digestion. Took me about 4 months to get it dialed in and doing ok after almost five years. Folks say your life is over, and I just tell them, no, it's just different now. Happy to help if you need advice.
Replies to "Hi @beaglebass - just joined this group today and noticed your post. I was diagnosed with..."
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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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?