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Is everyone with pNETs on creon?

Neuroendocrine Tumors (NETs) | Last Active: Apr 26 11:19am | Replies (20)

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@hopeful33250

Hello @janmar1960 and welcome to the NETs discussion on Mayo Connect. I appreciate you adding to this discussion group with your experiences.

As you are new to Connect, please share a bit about your history with NETs. For example, how long ago were you diagnosed? What type of treatments have you had, such as surgery, monthly injections, etc.

I look forward to getting to know you.

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Replies to "Hello @janmar1960 and welcome to the NETs discussion on Mayo Connect. I appreciate you adding to..."

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 .