Dominic Posted February 4, 2014 Share Posted February 4, 2014 I have just been diagnosed with NETs on my Pancreas head and in my liver. Here is my experience so far: Dom's Diary - http://domtravellog.blogspot.co.uk/ Link to comment Share on other sites More sharing options...
PCUK Nurse Jeni Posted February 4, 2014 Share Posted February 4, 2014 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. Link to comment Share on other sites More sharing options...
J_T Posted February 4, 2014 Share Posted February 4, 2014 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 regardsJulia x Link to comment Share on other sites More sharing options...
Dominic Posted February 6, 2014 Author Share Posted February 6, 2014 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 bestDom Link to comment Share on other sites More sharing options...
marie souter Posted February 6, 2014 Share Posted February 6, 2014 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.. Link to comment Share on other sites More sharing options...
J_T Posted February 6, 2014 Share Posted February 6, 2014 Great news about the op Dom, very best of luck with it!Julia x Link to comment Share on other sites More sharing options...
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