A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Dominic
Posts: 2
Joined: Tue Feb 04, 2014 8:56 am

Neuro Endocrine Tumours on the Pancreas and Liver, Age 43

Postby Dominic » Tue Feb 04, 2014 10:30 am

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/

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: Neuro Endocrine Tumours on the Pancreas and Liver, Age 4

Postby PCUK Nurse Jeni » Tue Feb 04, 2014 12:50 pm

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.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Neuro Endocrine Tumours on the Pancreas and Liver, Age 4

Postby J_T » Tue Feb 04, 2014 5:52 pm

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

Dominic
Posts: 2
Joined: Tue Feb 04, 2014 8:56 am

Re: Neuro Endocrine Tumours on the Pancreas and Liver, Age 4

Postby Dominic » Thu Feb 06, 2014 9:50 am

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

Dom

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Neuro Endocrine Tumours on the Pancreas and Liver, Age 4

Postby marie souter » Thu Feb 06, 2014 10:42 am

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..

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Neuro Endocrine Tumours on the Pancreas and Liver, Age 4

Postby J_T » Thu Feb 06, 2014 10:52 am

Great news about the op Dom, very best of luck with it!

Julia x