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Is everyone with pNETs on creon?
Neuroendocrine Tumors (NETs) | Last Active: Apr 12 3:59pm | Replies (22)Comment receiving replies
I was diagnosed Oct 23 after 7 yrs being investigated and diagnosed with IBS. I have slow growing 1-2% well differentiated . Stated on lanreotide late nov 23 . It’s stage 4 so no surgery possible . I’m still trying to process all the implications and though I feel quite well I’ve got to be careful what I eat . Im resident in the Uk and I’m due a second ct scan in may after treatment started so I hope it shows it is working. Last scan was inconclusive as it showed mall growth but no further spread. Processing all this has been difficult but I must remain positive whilst I’m feeling ok .
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@janmar1960 More or less had the same initial symptoms for years. Stomach problems that were treated with acid reducers. After a very bad stomach issue and an MRI followed by an endoscopy, the first conclusion was pancreatic cancer. It was like your mind got hit by a semi. My son had actually determined it was neuroendocrine tumors, and thank goodness he was correct. After more finite diagnosis and the dotatate pet scan which allowed for definite action, I started on lanreotide injections. After four injections it was determined that the growth was more than what the lanreotide could handle. So I started PRRT treatment in February 2026. I had a second treatment last week. No real results yet. No bad repercussions. Just extremely tired and unfortunately constipated which are definitely possible side effects. Stable is a great thing to be and that sounds as if that is where you are at right now.