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Neuro Endocrine Tumours on the Pancreas and Liver, Age 43


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PCUK Nurse Jeni

Hi Dominic,

Welcome to the forums, and thank you for posting your blog. Since you have a Neuro-Endocrine disgnosis, have you heard of the NET Foundation? Here is the link to their website, and they also have a specialist nurse Catherine, who would be happy to help you, should you have any questions at all (although it seems like you are doing OK). http://www.netpatientfoundation.org/

Also, just a thought - in your blog, it mentions enzymes from "Amazon" - while its good that you are pro-active about this, the pancreatic enzymes needed would be in much larger amounts than you can buy in health shops, online etc...These should be readily available from any of your care providers - hospital or GP. It would be in your own interest if you need enzymes (most people do), to get the proper ones and the correct doses. So, please do enquire about this when you next have a consultation.

Kind regards, and all the best for your treatment,

Jeni, Support Team.

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hi Dom, LOVE your blog. Oh the itching! It drove my husband, Ray, round the bend!

I've spent a happy 10 mins watching the video link, I was sucking my teeth quite a lot!

Good luck with your treatment and hope you get the op!

Best regards

Julia x

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Thanks Jeni and Julia,

I will check out the NETpatientfoundation.org and thanks also for all the advice.

I have been told I will get the op, so that it good news.

All the best


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Hi Dom and welcome,

The itching is horrendous but mom was prescribed Questran sachets which really helped tremendously she took them 3 times a day they mopped up all the excess in her blood .. and you can get sugar free sachets..

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