Diet and Nutrition Archives

05 Dec 2021

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Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Diet and Nutrition, Patient Advocacy, Treatment75Se-homocholic acid taurine (75SeHCAT), Bile acid diarrhea, Bile acid malabsorption, Bile salt, Bowel surgery, Cholecystectomy, Crohn's Disease, Digestive enzymes, Fecal bile acid test, Gallbladder, Irritable bowel syndrome (IBS), Pancreatic insufficiency, Serum 7αC4 test, Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET)

Before progressing, I wanted to emphasise this is not necessarily the same type of malabsorption caused by exocrine pancreatic insufficiency (EPI) which can potentially lead to something known as steatorrhea (amongst other things) but it can produce the same effect. Steatorrhea is different from bile acid issues and is more related to fatty acids. But it's another piece of the diarrhea jigsaw. Bile Acid Malabsorption (BAM) and Bile Acid Diarrhea (BAD) Post-surgical diarrhea is probably something to expect in the early days and after time, adjustments can be made to cater for these side effects. With NETs, particularly where there…

08 Aug 2021

By Ronny Allan

1 Comment

Cancer-related fatigue (CRF) – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, The NET Effect SeriesCancer related fatigue, Depression, Diabetes, Diarrhea, Fatigue, Hypothyroidism, Invisible illness, Malabsorption, NET syndromes, Nutrition, Quality of LIfe (QoL)

In my patient support group of almost 10,000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers. I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day. In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for…

04 Aug 2021

By Ronny Allan

8 Comments

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Diarrhea, Diet, Flushing, Incurable cancer, Lanreotide, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Nutrition, Quality of LIfe (QoL), Small intestine NET (SI NET), Somatostatin analogues

I do a lot of writing about NETs but I guess I've also done some talking too. Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings. Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides. Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal. Some talks were not recorded and/or permitted to be shared. These include (but are not limited to) a presentation to 'Global' Ipsen in Paris, UK…

13 Feb 2021

By Ronny Allan

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Neuroendocrine Cancer: Follow up tests and checks

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCancer surveillance, Tumour marker

Since 2010 I’ve had a lot of surveillance and testing. More than ordinary people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than I do and some get less. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, and even age.I have metastatic small intestine NET. In the first year or two after diagnosis, I seemed to be in an almost continuous testing phase but that…

02 Mar 2020

By Ronny Allan

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Neuroendocrine Cancer Nutrition Series Part 6 – featuring the 2020 video series by Tara Whyand RD

Diet and NutritionDiet, Exocrine pancreatic insufficiency, Ileum, Ketogenic diet, Malabsorption, Neuroendocrine cancer, Nutrition, Pancreatic enzyme replacement therapy (PERT), Supplements, Zinc

Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer. In the previous parts of this series I focused on the following: Article 1 – Vitamin and Mineral Challenges. This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietitian. This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario. Article 2 – Malabsorption. Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments.…

10 Oct 2018

By Ronny Allan

0 Comments

Neuroendocrine Cancer – Short Update from NANETS 2018

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

I would love to go to a NANETS conference but I would need sponsorship or otherwise have to fund my own way there. Seattle sounds like a great place to visit. I would even have been their twitter correspondent had they asked! I've been to the European equivalent twice, they always have theirs in Barcelona it would seem, at least NANETS uses different locations making it more interesting. It's a scientific conference for the most part, but I guess some basic stuff is also covered. However, in the world of instant contact and communications on the internet, together with twitter,…

03 Feb 2018

By Ronny Allan

5 Comments

Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Clinical Trials and Research, Diet and Nutrition, TreatmentAmino acids, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Diarrhea, Enterade® advanced oncology formula, Hormones, Malabsorption, Medical food, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Radiotherapy, Surgery

Diarrhea is a huge subject for NET patients, whether it's caused by the tumour itself (i.e. a syndrome), due to treatment, knock on effects of treatment, or some other reason, it can dramatically limit qualify of life. Working out the root cause can be problematic even for medical teams. I wrote about these issues before in my article Neuroendocrine Cancer - the diarrhea jigsaw. So when I saw the data from a trial of something called enterade®, I was immediately drawn to investigate. I don't normally write articles on over the counter commercial products but this one is an exception…

30 Jan 2018

By Ronny Allan

1 Comment

I now take food with my medicine!

Diet and Nutrition, Living with Neuroendocrine Cancer, SurvivorshipAdvanced neuroendocrine cancer, Asthma, Carcinoid syndrome, Cholecalciferol, Creon, Diet, Eliquis (apixaban), Fat soluble vitamins, Hormones, Incurable cancer, Lanreotide, Levothyroxine, Malabsorption, Medicines and Healthcare Products Regulatory Agency, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreotide, Omega 3, Pancreatic enzyme replacement therapy (PERT), Probiotic, Pulmonary embolism, Quality of LIfe (QoL), Somatostatin analogues, Somatuline Autogel (US: depot), Supplements, Vitamin ADEK, Vitamin B12, Vitamin D, Water soluble vitamins

If you want to strike up a friendly conversion with a Brit, ask him or her about the weather - we're really famous for our weather conversations and they normally focus on rain or clouds! However, despite the famous British 'reserve' and 'stiff upper lip', they also frequently talk about being 'under the weather', a phrase meaning slightly unwell or in low spirits.I find myself smiling at some of the conversations I hear in medical establishment waiting rooms, particularly the potentially long wait for blood tests. Here, conversations bypass the weather and focus on being under the weather! I thought…

20 Nov 2017

By Ronny Allan

5 Comments

Living with Neuroendocrine Cancer – the 7 Year Itch

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Allergies, Atopic dermatitis, Bradykinin, Carcinoid syndrome, Eczema, Food allergy, Gastrinoma, Glucagonoma, Histamine, Hormones, Lanreotide, Lung NETs, Malabsorption, Mastocytosis, Merkel cell carcinoma, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Octreotide, Pheochromocytoma, Quality of LIfe (QoL), Rash, Rosacea, Serotonin, Somatostatin analogues, Substance P, Tachykinin, Zollinger-Ellison Syndrome

I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery. It had taken 12 days for me to feel strong enough to venture onto social media with a simple message "I'm feeling perkier". For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed. I guess I met some of these descriptors most…

05 Oct 2016

By Ronny Allan

20 Comments

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Survivorship, TreatmentAlternative medicine, Diet, Glucagon, Glucagonoma, Hypoglycemia, Insulinoma, Liver metastases, Metastatic Neuroendocrine Cancer, Neuroendocrine, Nutrition, Pancreatic cancer, Pancreatic NET (PanNET)

Steve Jobs died 5 Oct 2011. RIP Steve, you certainly made a difference to the world of technology and that is still being felt today. I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That's interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported. There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary - click here to read…

Category: Diet and Nutrition