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@kevinmonroemi

Dealing with Nets! Wow we are all different I learned as much as I could about my disease Grade 2 functioning gastrinoma pnets metatasic to the liver pancreatic primary presentation was perforated esophagus followed by emergency surgery 18 days in the hospital came home with a feeding tube I had quite a few complications and back and forth to emergency room for another 20 days in the following couple months before I had a real diagnosis. First treatment was lanreotide it controlled my diarrhea it did nothing to shrink the 20-30 liver tumors. I then had captem for 7 months it did nothing except make me tired and like you said chemo brain. Sky high gastrin was still about 1800. Then I had high dose radiation on liver y-90 it wasn’t fun but tolerable until second treatment caused radiation stomach ulcer and I lost one kidney I had 2 rare side effects! Back on a feeding tube for 3 months. It took a year to recover. Guess what? Treatment worked I have been stable or better for 1-1/2 years. Not sure you ever heard live, laugh and love! Do it every day be grateful someone always has it worse. Reach out to anyone that makes a positive in your life. I push myself everyday! This forum helps. Join the support group if it suits you. This is a journey that can have some very dark days don’t get stuck there! Sorry if I rambled!

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Replies to "Dealing with Nets! Wow we are all different I learned as much as I could about..."

You've definitely had a tougher time! Did you ever talk to palliative care folks to help with some of the side effects? You had such GI issues you probably had to stay focused on that! You're right, find the joy!