Pancreatic NET

Hi everyone, this is my first post. Im just introducing myself so i hope I dont bore you all.

2 years ago I had surgery to successfully remove a NET tumour  from my pancreas. I lost half my pancreas and all my spleen. I felt great for a year but then a follow up scan showed half a dozen Nets in my liver, most tiny and a 1cm one. 

It took a worryingly long time to get a treatment plan but I started on Lanreotide last December. The first month had no noticeable side effects, January had bad nausea but only for a few days, but February was awful. I had a variety of things like blurry eyes, bloat, prickly pains and shattering fatigue. I tried to get in touch by phone, no luck, but when I went fir my March jab the nurses were amazing and explained that everything I was getting was side effects which often happen in the early days of treatment but can calm down. So I felt calmer and able to cope knowing that it was probably not disease progression.  Sorry I'm going on.

Anyway here I am, carrying on, most side effects gone except for fatigue and a little bloat(not severe at all).  I have been given Crean but wonder if I really need it and will it be another drug in my body and once I start it will I need to use it forever? My diarrhea is not happening now. I got Crean yesterday but don't know if I should start it? Any ideas?

Thanks fir reading - I will ve briefer in future.

  • Sounds like you are coping very well with it. My husband has to take up to 5 Creon with his drink supplements. Creon is very difficult to get in most places including Europe. I would talk to your di titian to see if you really need it but don’t stop by yourself just in case you do need it. Your post wasn’t too long either. Good Luck with it all. ️ ️  jjxx

  • Thanks. Nice to hear from you.

    As I haven't actually started it yet, and have no diarrhea, I think I'll wait till my jab in 8 days and ask them. 

    Maybe I will need it in the future....

    Take care