Category: Living with Neuroendocrine Cancer

20 Nov 2017

5 Comments

Living with Neuroendocrine Cancer – the 7 Year Itch

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…

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24 Oct 2017

2 Comments

Round up of NANETS 2017 – Let’s talk about NETs #NANETS2017

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAnxiety, Appendiceal NET, Bronchial NET, Cabozantinib, Diarrhea, Fatigue, Ga68 PET/CT, Lu-177, Lutathera, Lymph nodes, NETTER-1, North American Neuroendocrine Tumor Society (NANETS), PRRT, Quality of LIfe (QoL), Somatostatin analogues, Somatostatin receptors (SSTR), SSTR-PET

NANETS (North American Neuroendocrine Tumor Society) is one of the biggest NET conferences, bringing together NET Specialists from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field of Neuroendocrine Neoplasms (Tumors and Carcinomas). This is fairly complex stuff but much of it will be familiar to many. I’ve filtered out several outputs from the conference which I think are both relevant and topical to patients. The list is below allowing you to easily peruse and read further via linkages if you need to read more. Remember, some of these are extracts so do not…

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16 Oct 2017

2 Comments

Opinion: Neuroendocrine Cancer – Can it be cured?

Opinion: Neuroendocrine Cancer – Can it be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Biological therapy, Carcinoid tumour, Chemotherapy, Cure, Full remission, Hormones, Incurable cancer, Lanreotide, Liver directed therapy, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), No evidence of disease (NED), Oncolytic virus, Palliative treatment, Partial remission, Quality of LIfe (QoL), Somatostatin analogues, Surgery

Reviewed and tweaked in August 2026. OPINION: "Cured" - In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you've been cured. I'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed…

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08 Oct 2017

7 Comments

The shock effect never wears off

The shock effect never wears off

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Chemotherapy, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Surgery

Patient stories are key to any awareness campaign. Nothing like a human being standing up and letting you know about their experience. Many are positive examples of how they are overcoming their trials and tribulations, others tell stories of a struggle. They all have different styles, some are the 'kick ass' type stories, some are just thankful, some are reflective - all of them are perfectly acceptable. I normally like to place myself somewhere in the middle with phrases like "I'm still here", although I can veer left and right when the mood takes me! Because of my social media…

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02 Oct 2017

3 Comments

Cancer Isn’t All About Me

Cancer Isn’t All About Me

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Biopsy, Carcinoid tumour, Core Biopsy, Incurable cancer, Mammogram, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Ultrasound

click picture to read "My Right-Hand Woman" Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight. Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is…

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08 Jun 2017

20 Comments

8 tips for conquering fear – Living with Neuroendocrine Cancer

8 tips for conquering fear – Living with Neuroendocrine Cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Incurable cancer, Neuroendocrine cancer, Quality of LIfe (QoL)

Before I was diagnosed with cancer, my health was in reasonable condition. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things going on. Luckily for me, the 'system' picked up something suspicious and I am where I am today. It's amazing to think a…

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27 Feb 2017

4 Comments

It’s been 10 years since I saw a scalpel (….but my surgeon is still on speed dial)

It’s been 10 years since I saw a scalpel (….but my surgeon is still on speed dial)

Living with Neuroendocrine Cancer, Survivorship, TreatmentAdvanced neuroendocrine cancer, Axillary nodes, Carcinoid tumour, Distant metastatis, Endocrine, Ki-67, Lung nodule, Lymphadenectomy, Lymphatic system, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nodule, Octreoscan (Octreotide scan), Quality of LIfe (QoL), Supraclavicularfossa (SCF) lymph nodes, Surgery, Thyroid cancer

In 2012, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan. I had known since shortly after diagnosis in 2010 that 'hotspots' were showing in my left 'axillary' lymph nodes (armpit) and my left 'supraclavicular fossa' (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection, and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications. There had always been a plan to optimise cytoreduction of my…

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21 Feb 2017

0 Comments

Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, TreatmentAdvanced neuroendocrine cancer, Afinitor, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Cisplatin/Etoposide, CLARINET, Everolimus, Food and Drug Administration, Ga68 PET/CT, Ga68-DOTATATE, Gastrointestinal NET (GI-NET), High grade neuroendocrine tumour (NET), Immunotherapy, Lanreotide, Liver directed therapy, Lu-177, Lung NETs, Lutathera, Metastatic Neuroendocrine Cancer, Midgut, NETSPOT, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Octreotide scan, Pathology, Peptide receptor radionuclide therapy (PRRT), Poorly differentiated, PRRT, RADIANT, Somatostatin analogues, Sunitinib (Sutent)

I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed…

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27 Jan 2017

2 Comments

Endoscopy for NETs – taking the camera to the tumour

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine CancerAdvanced neuroendocrine cancer, Biopsy, Bronchoscopy, Camera pill, Capsule endoscopy, Carcinoid crisis, Carcinoid tumour, CLO test, Colonoscopy, Endoscopic retrograde cholangiopancreatography (ERCP), Endoscopic ultrasound (EUS), Endoscopy, Gastroscopy, Helicobacter pylori, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic cancer, Sigmoidoscopy, Surgery

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom. The mouth route is more accurately called a Gastroscopy…

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18 Jan 2017

5 Comments

Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Awareness, Clinical Trials and Research, Living with Neuroendocrine Cancer, TreatmentAdvanced neuroendocrine cancer, Edotreotide, Ga68 PET/CT, Indium 111-pentetreotide, Lutathera, Metastatic Neuroendocrine Cancer, NETSPOT, NETTER-1, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nuclear medicine, Octreoscan (Octreotide scan), Octreotide, Pancreatic NET (PanNET), Paraganglioma, Pentetreotide, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, PRRT, Radionuclide, Satoreotide (Lutetium-177), SomaKit TOC

Theranostics is a joining of the words therapeutics and diagnostics. You may also see it conveyed as 'Theragnostics' and these terms are interchangeable. The basic aim of theranotistics is to find and then destroy the 'bad guys'. With Neuroendocrine Cancer, finding the tumours (the bad guys) can often be a challenge - they can be small and/or difficult to find - they are sometimes expert at camouflage. Moreover, once found, they can then be difficult to treat (destroy), as they can often prove resistant to conventional cancer drugs and many are inoperable due to sheer quantity, spread and positioning. When…

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04 Jan 2017

4 Comments

Does your body now have an extra organ? The MESENTERY

Does your body now have an extra organ? The MESENTERY

Living with Neuroendocrine CancerDesmoplasia, Mesenteric root, Mesentery, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Serotonin, Small intestine NET (SI NET), Superior mesenteric artery, Superior mesenteric vein

One of the very first words I heard at diagnosis was the word "Mesentery". In the news today is the announcement that is now might just be a new organ following accepted findings from research conducted in the University of Limerick Ireland. I always knew it was something which held the small and large intestines in place within the abdomen so like many others, I just thought it was some kind of membrane type structure and I also knew there was some kind of interaction with the peritoneum, another word which I was to become familiar with. This is an important area…

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18 Dec 2016

6 Comments

Keep your lights burning

Keep your lights burning

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET)

I recently met a colleague who I hadn't seen for 30 years. He was more than just a colleague, he was once my 'Commanding Officer'. He had been made aware of my illness but after asking how I was, he was content with my short explanation "I'm not dead yet". The great thing about soldiery is that it's perfectly acceptable to make simple and light hearted statements about very difficult situations. The other great thing is that you can pick up where you left off 30 years ago, as if it were only yesterday. And 'Bravado' is not only acceptable, it's mandatory! A week later,…

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26 Oct 2016

7 Comments

Living with NETs – a patients included award winning site

Living with NETs – a patients included award winning site

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipLanreotide, Metastatic Neuroendocrine Cancer, NET Cancer Day, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

It's no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients. It was subsequently launched in 2016 and is very aptly named 'Living with NETs'. Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative. And, this is great awareness for Neuroendocrine Cancer at a major pharma event. I'm also delighted to be speaking alongside Ipsen as the 'EyeforPharma' Patients Summit event in London on…

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05 Oct 2016

20 Comments

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

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…

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01 Oct 2016

1 Comment

Neuroendocrine Cancer: Patient Power!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentCancer grading, Diagnosis, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Pancreatic NET (PanNET), Prognosis, Surgery

There's a saying that the patient is the most underused person in healthcare and I think there's a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it's less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors. If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in…

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19 Sep 2016

5 Comments

“Not the Stereotypical picture of sick”

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipChronic condition, Complex regional pain syndrome (CRPS), Invisible illness, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET)

I've never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others? I like to look for the positive things these well-meaning messages can convey. Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell? If I'm feeling mischievous, I sometimes say "yes..... but you should see my insides". Most of the time, it dispels any awkwardness and they follow my laughter. Yesterday, I listened to a few…

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19 Sep 2016

14 Comments

Procrastination – it’s a killer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer

It's amazing to think that one minute I'm back from a holiday in the Caribbean and the next minute I'm being told the inside of my body is a 'train crash'. Just how does that work? In July 2010, I said to the Gastroenterologist investigating my low hemoglobin "I'm not even feeling ill". He sent me to an Oncologist who then told me that without treatment, the prognosis wasn't good (i.e. I would eventually die). I also told him I wasn't feeling ill ....as if my protest was somehow going to reverse the situation! The term 'silent cancer' was apt in…

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24 Aug 2016

8 Comments

Stop talking about it, just go do it!

Stop talking about it, just go do it!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with RonnyAdvanced neuroendocrine cancer, Incurable cancer, Quality of LIfe (QoL)

"Yes, we must do this one day ......." and then we don't! We're all guilty of it aren't we? For years Chris and I have discussed travelling around the coast of Scotland and we're just back from a fantastic holiday where we saw some wonderful scenery. And we did the Edinburgh Tattoo on the way there! Yet another ....... "We must do this one day......." I've even decided that looking at this wonderful scenery is a form of medicine and a way to be inspired to do more. Admittedly we were motivated by the recent declaration of the new "North Coast 500"…

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01 Aug 2016

10 Comments

Living with Cancer – if you’re reading this, you’re surviving

Living with Cancer – if you’re reading this, you’re surviving

Inspiration, Living with Neuroendocrine Cancer, SurvivorshipCancer survivor, Incurable cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Survivor, Survivorship

You may sometimes feel like you're not surviving but if you're reading this then you most definitely must be! For the first few years after my diagnosis, I avoided using the word 'survivor' in relation to my incurable cancer. I had no idea what was going to happen. It just didn't seem to sit right despite the fact I'm a 'glass half full' kind of guy. However ........ I was studying the term 'Survivorship' and found it also applies to those living with incurable and long-term cancer. This piece of research totally changed my thinking. Today is National Cancer Survivors…

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15 Jun 2016

4 Comments

Neuroendocrine Cancer – it can be ‘smoke and mirrors’

Awareness, Living with Neuroendocrine CancerCushing's disease, Cushing's syndrome, Endocrine, MEN1 syndrome, Multiple Endocrine Neoplasia (MEN), NET syndromes, Neuroendocrine, Neuroendocrine cancer, Parathyroid gland, Thymic NEN

In a previous life, I used the term 'smoke and mirrors' quite a bit. I was used to dealing with many different types of people, some who wanted something, some who wanted to buy or sell something. Most of the time it was overt but the devil was usually in the detail. Sometimes there was an element of 'covertness' or a 'hidden agenda'. It was always tricky working out the details of the hidden agenda and sometimes it was only known when it was too late. Some of you will already be seeing where I'm going with this line of thinking -…

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04 Apr 2016

3 Comments

Somatostatin Analogues and delivery methods in the pipeline

Somatostatin Analogues and delivery methods in the pipeline

Awareness, Clinical Trials and Research, Living with Neuroendocrine CancerAcromegaly, Adrenocorticotropic Hormone (ACTH), Bynfezia Pen, COR-003, COR-005, Cortisol, CRN01941, Cushing's disease, Cushing's syndrome, DP1038, Everolimus, Flushing, Generic drugs, Growth hormone (GH), Hypercortisolism, Insulin-like growth factor 1 (IGF-1), Lanreotide, Levoketoconazole (Recorlev), MTD201, MYCAPSSA , Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Octreotide-RP, Pasireotide, Q-Octreotide, RECORLEV (levoketoconazole), SIGNIFOR® (Pasireotide), SOM230, Somatoprim, Somatostatin receptors (SSTR)

NOTE - THIS IS IN NEED OF AN UPDATE AND IS ON MY LIST OF THINGS TO DOThis is my live blog post covering new developments in the area of new Somatostatin Analogues and new delivery systems. AbstractAs most of you will be aware, there are currently two main types of Somatostatin Analogues (SSA) in use for the treatment of mainstream Neuroendocrine Tumours (NETs) - Octreotide and Lanreotide. You can click on the links for information on both of these well-known NET treatments. This post will focus on the not so well known and anything in the pipeline including different delivery…

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21 Mar 2016

5 Comments

100,000 blog views – thank you!

Living with Neuroendocrine CancerNeuroendocrine cancer, Neuroendocrine tumour (NET)

NET Cancer Blog has just recorded 100,000 blog views. I'm extremely excited to have reached this major milestone. However, I'm also really grateful to my followers on this blog site, on Facebook, on Pinterest, on Google+ and on twitter for supporting me through thick and thin. Your engagement with my blog whether a simple 'like', a share, a comment, a pin, a tweet, a retweet, an email or via a private message; is not only extremely motivating but also very humbling. Thank you so much for giving NET Cancer 100,000 pokes in the eye! Onwards and upwards to 200,000! Ronny I’m also active on Facebook. …

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11 Feb 2016

12 Comments

Tips for doctor patient communication – “Trust me, I’m a Doctor”

Tips for doctor patient communication – “Trust me, I’m a Doctor”

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipNeuroendocrine cancer, Physician, Quality of LIfe (QoL), Surgeon

Reviewed and updated 4th June 2022Patient doctor communicationsOne of the most frequent posts on patient groups and forums is about the Patient-Doctor relationship (or occasionally a lack of it.....). Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010. The vast majority of people tend to trust Doctors and I'm a bit old-fashioned in this respect. If you have metastatic Neuroendocrine Cancer, you see medical staff a lot! Relationships and communication can therefore become more important than ever.However, people with less…

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21 Jul 2015

16 Comments

Sorry, I’m not in service

Sorry, I’m not in service

Awareness, Living with Neuroendocrine CancerNeuroendocrine cancer, Quality of LIfe (QoL), Surgery

This blog was first published in 2015 and featured by Macmillan Cancer UK - although they don't feature my guest blog now due to their revised publication rules (but you're reading it now so it doesn't matter!). See this link to their Facebook post publishing my guest blog click here .....let's activate this discussion in the Facebook post comments! Let's get this post bumped up their Facebook feed - this generates awareness. (EDIT: Macmillan now have a login system to read the blog, so apologies). But you can read the Facebook post a the link and see the comments from…

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14 May 2015

8 Comments

Chasing normality

Living with Neuroendocrine Cancer, Survivorship, TreatmentBlood clot, Clexane, DEXA scan, Lanreotide, Multidisciplinary team (MDT), Pulmonary embolism, Quality of LIfe (QoL), Scan, Somatostatin analogues, Stable cancer, Surgery, Thyroid, Vitamin D

Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. The cancer may be 'controlled' with treatment, meaning it might seem to go away or stay the same, and it doesn’t grow or spread as long as you are getting appropriate treatment. Sometimes the treatment shrinks the cancer, but the cancer is still there – it doesn’t go away and stay away – it’s not cured. More people are living with cancer than ever before and the ratio…

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03 Feb 2015

27 Comments

Lanreotide – Four more years

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCarcinoid syndrome, Lanreotide, Malabsorption, Neuroendocrine cancer, Octreotide, Somatostatin analogues, Steatorrhea

This post has been superseded by the following: Lanreotide: it's calling the shots - click here. Lanreotide: 10 (then 13) more years please! - click here. Lanreotide vs Octreotide - click here. Original post: The UK general election steps up a gear this month and social media is playing a huge part in the debate leading up to 7 May 2015. In the USA, the different parties are busily working on their candidates ready for 2016. It appears that politicians worldwide, are keen to exploit all areas of communication to eke out votes from the young and old who now use social media on a scale…

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05 Dec 2014

0 Comments

Neuroendocrine Cancer – not an exact Science

Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Hormones, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Somatostatin analogues

UNDER CONSTRUCTION I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study. Different teaching methods? different teachers? Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since…

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12 Jul 2014

1 Comment

Finding Hotspots

Finding Hotspots

Living with Neuroendocrine CancerGa68 PET/CT, Lymph nodes, Octreotide scan, Surgery, Thyroid nodule

Just back from a nice relaxing holiday in Tenerife. I don't know about you but when overseas I find myself looking for 'hotspots' everywhere I go....... I don't mean trendy entertainment venues, I'm talking about the modern phenomenon known as a WiFi signal! I also mean free and open connections. Even recent price reductions within Europe did not tempt me to use 'data' overseas and I didn't even want to take advantage of the £2 per day upgrade of my mobile phone account which would give me access to my minutes/MBs overseas on a temporary basis. I just look for free WiFi…

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31 May 2014

4 Comments

Hadrian’s Wall Day 6 – Mission Complete!

Hadrian’s Wall Day 6 – Mission Complete!

Awareness, Inspiration, Living with Neuroendocrine Cancer, Travel with RonnyMetastatic Neuroendocrine Cancer, Neuroendocrine cancer, Quality of LIfe (QoL)

The final leg of the our Hadrian's Wall walk took us from beautiful Carlisle to the remote coast of North Cumbria at Bowness-on-Solway. We are staying there tonight before beginning our journey home tomorrow (via Newcastle). Amazingly our digs have a wicked view of the Scottish coastline and the setting sun - see picture above which was taken from our room. It was pretty surreal to have finished 6 days of torturous walking but also to be able to look at such a wonderful view of the country in which I was born. Some people say final leg of the…

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13 May 2014

3 Comments

North of the wall is a dangerous place – you must never go there!

Living with Neuroendocrine CancerCancer grading, Cancer staging, Metastatic Neuroendocrine Cancer, Neuroendocrine

There was a 60 minute silence last night as another episode of Game of Thrones was aired. Not a Facebook post or tweet in sight. This has to be 'up there' in a list of the best TV series ever? Don't know about you but I'm sometimes confused about who is who and how they are related and/or connected! (see useful chart at the bottom of this post) Chris and I love the introduction bit. She likes the music, I like the geography. There are some obvious correlations there, e.g. 'The Wall' is meant to relate to Hadrian's Wall with…

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