Hi I've just joined this forum and I have neuroendocrine cancer, pnet, diagnosed 5years ago. I've had surgery, whipples, then had a recurrence with liver mets 2 and a half years ago. I've had captem chemotherapy which shrunk the mets a bit, and I am now on lanreotide injections. I am stable and being scanned every 3 months.

I find it's very up and down having neuroendocrine cancer with bowel and eating issues especially. 

Hi

Sorry to hear you're having some issues. Are you having to use Creon or something similar with your food?

I was diagnosed 7 years ago and have a lot of ups and downs and now have diabetes as well, so it is certainly worth chatting to the dieticians as they are very good with what to eat and when, and the use of the enzyme replacements. Talking to the various teams available to you is definitely the way forward. I find they very helpful and very understanding.

All the best xx

thanks, yes take creon ,omeprazole, codeine and colesevelam for bile acid malabsorption. but still have issues at times. I'm in contact with a dietician but everything takes so long .

thanks, yes take creon ,omeprazole, codeine and colesevelam for bile acid malabsorption. but still have issues at times. I'm in contact with a dietician but everything takes so long .