Neuroendocrine carcinoma (NEC) – Page 2 – Ronny Allan

31Aug 2018 by Ronny Allan No Comments

RonnyAllan.NET – Community Newsletter Covering August 2018

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[caption id="attachment_13604" align="aligncenter" width="959"] RIP Aretha Franklin - Neuroendocrine Cancer[/caption] Summary for August 2018 NET News Several headlines covering the past month: 1. The death of Aretha Franklin was a shock to her many fans around the world, including myself. I had no idea she was a Neuroendocrine Cancer patient. However, it would appear her death is being assigned as 'Pancreatic Cancer' mainly due to a rather clumsy statement from her physician. Despite the fact that her death certificate specifically confirms Neuroendocrine Cancer, we will be fighting a hard battle for years to come. The same thing happened with Steve Jobs, although I suspect we have now won that battle despite frequently news articles saying Pancreatic Cancer. Read about Aretha Franklin here and check out the link to her death…

14Aug 2018 by Ronny Allan No Comments

I wish I had another cancer

Awareness, Inspiration, Patient Advocacy

AN OPINION POSTI’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that).Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’. Ironically, although some cancers are almost certainly worse than others (for example in prognostic terms), it seems like a race to the bottom as patients fight for the ‘top’ spot. It works both ways as some people perceive they have…

30Jul 2018 by Ronny Allan 8 Comments

RonnyAllan.NET – Community Newsletter JULY 2018

Newsletters

Summary for July Personal News Another unusual month, after a bizarre June. The chest infection has gone but still awaiting results of an x-ray to confirm. July was supposed to be partly holiday but that was cancelled due to illness. The chest infection caused a 4kg weight loss and only half of this has returned to date. I also got the results of my first ever Ga68 PET Scan and this resulted in an article below. No longer a boring stable patient but nothing that needs doing imminently. Many thanks to all the messages which continue to arrive both public and privately, I'm most grateful. I received my 100th Lanreotide earlier in the month and I'm still here following my 8 year 'cancerversary' on 26 July 2018. Many of you…

02Jul 2018 by Ronny Allan 5 Comments

RonnyAllan.NET – Community Newsletter JUNE 2018

Newsletters

Summary for June For the first time in 3 years, I didn't write any new articles in a single month (other than the monthly newsletter). This was due to a prolonged chest infection from which I'm still recovering. I'm so much better now (thankfully) but I suspect recovery has been slightly hampered by the recent UK heatwave. I managed a relaxing short break on the south coast of England to make up for my cancelled 3 week road trip to Scotland My weight remains below 10 stone, the lightest I have been for over 30 years. For me, weight loss is a red flag, although this occurrence wasn't sufficient for me to start waving one. I will get the results of my Ga68 PET scan on 11 July (please note…

07Jun 2018 by Ronny Allan 5 Comments

RonnyAllan.NET – Community Newsletter May 2018

Newsletters

Summary for May Different type of intro to my newsletter as it's late due to unexpected illness. In some ways, what happened in May is possibly connected. I had quite a bit of work to do for a 'Patients Included' event in May in Berlin. I managed to meet the deadlines and admit I was slightly out of my comfort zone. That said, it was a success and I managed an amazing amount of new contacts and awareness for Neuroendocrine Cancer. I arrived back exhausted and turned my attention to another two things - a patient presentation to the inaugural UK Dietitian Group study day followed by a holiday to Wales. The study day was done on the way to my holiday, was very successful and I enjoyed it. …

30Apr 2018 by Ronny Allan 9 Comments

RonnyAllan.NET – Community Newsletter April 2018

Newsletters

Headlines 1. Patients Included. I'm a big believer that patients should be included in all aspects of healthcare and I can very much relate to any initiative that promotes this. I'm therefore pleased to have been listed as a Patients Included accredited site providing further EXTERNAL awareness opportunities - read about this here. 2. I've accepted an appointment to the Strategic Advisory Board on MultiMed Inc, the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) - It also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here. 3. My blog site is 4 years old. When I set my blog…

11Apr 2018 by Ronny Allan 3 Comments

Sapanisertib – a drug on trial for Neuroendocrine Tumors (NET) with a pancreatic primary

Clinical Trials and Research, Treatment

Researchers are testing the drug Sapanisertib to see if it can halt the progression of pancreatic NETs (pNETs) which cannot be surgically removed, have not responded to other treatment, and have spread to other parts of the body. What is Sapanisertib? Sapanisertib is one of a group of targeted therapy drugs that interferes with tumor progression by inhibiting an enzyme known as mTOR which a tumor cell needs for growth. In fact this is the same technique used in Afinitor (Everolimus), already approved for NETs. It is also being tested in a number of different advanced cancers, including bladder, kidney, breast, liver, and certain types of lung cancers, among others. The Clinical Trial The primary goal of the phase II study is to evaluate how well pNET tumors respond to Sapanisertib.…

03Apr 2018 by Ronny Allan 2 Comments

RonnyAllan.NET – Community Newsletter March 2018

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Headline for the period of March 2018 is reaching a milestone of half a million blog views. Yay ...... Read more here. Amazing that I clicked over the 500,000 mark in a taxi going from Barcelona airport to my hotel for ENETS 2018 where I'd been sponsored by INCA. Fortunately I had prepared the post earlier and was able to spread the news in a few clicks. I picked up some great information at this conference which I'm feeding into my articles so you get the best and latest thinking. Here's a couple of pictures of me with famous NET specialists. [caption id="attachment_12597" align="aligncenter" width="300"] Dr James Yao[/caption] [caption id="attachment_12598" align="aligncenter" width="300"] Dr Jonathan Strosberg[/caption] I caught this news in my social media NET A website I helped design with a…

05Mar 2018 by Ronny Allan 4 Comments

RonnyAllan.NET – Community Newsletter February 2018

Newsletters

Another great start to the year in both NETs in the news and my social media activity. It's been really cold where I am though! I'm so busy with personal contacts, I decided to set up a chat room so that other people can help me answer some really difficult questions! This 'chat rom' is not designed to run like a traditional Facebook forum, it's a place to make people feel safe and to discuss without the usual distractions and dramas that people often encounter. And .... it's about learning. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people (I already have a few of the latter). It's also a place where I will bring in expertise to chat about various…

18Feb 2018 by Ronny Allan 16 Comments

Things to do today

Inspiration, Living with Neuroendocrine Cancer, Survivorship

When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt.I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term!Of course, sometimes you have little choice if you're ill from your condition or something routine.So now and then, I just breathe in and breathe out (then repeat). It's very enjoyable!Take a break if you need one. Click here and answer all questions to join my private…

03Feb 2018 by Ronny Allan 5 Comments

Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Diet and Nutrition, Treatment

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 given that it has been classed as a medical food since 2012 and is also used to rehydrate patients undergoing radiotherapy and chemotherapy for cancer (so not just for NETs).What…

01Feb 2018 by Ronny Allan 2 Comments

RonnyAllan.NET – Community Newsletter January 2018

Newsletters

A great start to the year in both NETs in the news and my social media activity. Of course the headline is the US FDA approval of Lutathera (Lu-177) - i.e. PRRT I caught this news in my social media NET FDA finally approves PRRT in USA. Long awaited and has caused much excitement on all forms of social media. I'm very pleased for my USA friends but we mustn't forget it's also required in so many other places. Help me populate locations in my live article on PRRT click here. NET Epidemiology continues to be discussed and (yet) another well known NET expert confirms my 2 year old article saying that the disease can no longer be considered rare. I suspect more dominoes will follow. Click here for the evidence. MIDATECH Pharma…

30Jan 2018 by Ronny Allan 1 Comment

I now take food with my medicine!

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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 I was a regular when I started to recognise people…

31Dec 2017 by Ronny Allan 2 Comments

NETwork with Ronny © – Community Newsletter DECEMBER 2017

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6 HAPPY NEW YEAR and welcome to Ronny Allan's Community newsletter for December 2017. A quieter month due to the holiday season in the latter half. I was generally quieter in the first half too, maybe that's a good thing? Nonetheless, I still managed to accumulate nearly 20,000 hits this month. At the end of 2017, I've been reflecting on the amazing support from you guys. I'm a bit 'discombobulated' but also proud to see that I've had an amazing quarter of a million hits on my blog site in 2017 alone, double the 2016 figure. It seems almost impossible to carry that momentum on in 2018 but I'll give it a go! Check out my top 6 posts of 2017 by clicking here. AND ..... I'm now officially ronnyallan.NET…

30Dec 2017 by Ronny Allan 2 Comments

Ronny Allan – Top 6 posts of 2017

Awareness, Inspiration

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email These are my top performing posts for 2017 - comprising one eighth of my entire hits for the year. My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015. A chunk of these figures can be attributed to most of these articles. Please share to maintain the momentum. Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017 The Human Anatomy of Neuroendocrine Cancer Making the point that Neuroendocrine Cancer is not confined to a particular part of the body 9,906 Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis…

12Dec 2017 by Ronny Allan 3 Comments

Update: Management of Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, Treatment

This is an excellent and positive video based overview of where we are with the Management of NETs. This is a presentation from a NET Specialist (who some of you may know) presenting to a "GI Malignancies" conference. This is therefore not only awareness of NETs, it's also some good education for non NET GI experts who may only know the very basics. Useful for patients too! I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles. The classification picture is good as it explains the different facets of NETs and how NETs are classified and categorised in a general way - not seen it done this way before. Slightly out of date as…

04Dec 2017 by Ronny Allan No Comments

NETwork with Ronny © – Community Newsletter NOVEMBER 2017

Newsletters

Welcome to Ronny Allan's Community newsletter for November 2017. A very strong beginning of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site (currently 724 shares). I suspect the number of shares will never be beaten (there were 652 within 36 hours) and as far as I know perhaps this is now the most shared NET awareness post ever on social media. The support for this single post was so phenomenal; it actually eclipsed my entire NET Cancer Day effort on 10 Nov! I am so grateful to those who made that happen ♥ That said, I was actually pretty…

01Nov 2017 by Ronny Allan 4 Comments

NETwork with Ronny © – Community Newsletter OCTOBER 2017

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Hi NETworkers! Welcome to Ronny Allan's Community newsletter for October 2017. A very strong end of the month due to massive support for my Halloween themed but very serious and hard-hitting post "Neuroendocrine Tumors - no treats, just tricks". If you've not seen it or commented on it, check it out here on the Facebook site. I suspect the number of shares will never be beaten (652 in 36 hours). 31 Oct 2017 is now the biggest number of views on any one day, breaking the previous record set in Jan 2017. It also made October 2017 the highest monthly views ever. I am so grateful to those who made that happen ♥ What's in the NET News The following news items may be of interest: The huge (but expected) news…

30Oct 2017 by Ronny Allan 35 Comments

Neuroendocrine Cancer – normally slow but always sneaky – an awareness post from Ronny Allan

Awareness

An awareness post from Ronny Allan Neuroendocrine Cancer – normally slow but always sneaky – an awareness post from Ronny Allan There are a lot of scary diseases in this world but some of them are particularly sneaky. One such sneaky disease is the lesser-known type of cancer that infiltrated my body - Neuroendocrine Cancer. Not only is it scary and sneaky, but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. It is the great pretender. It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen. Once it's established in the primary location…

16Oct 2017 by Ronny Allan 2 Comments

Opinion: Neuroendocrine Cancer – Can it be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

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 years of misdiagnoses for other conditions. But the latest statistics (and even these can be said to be quite old) indicate things are changing. The massive increase in incidence rates indicates earlier diagnoses and it's true for…

08Oct 2017 by Ronny Allan 7 Comments

The shock effect never wears off

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment

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 footprint, I get a lot of private messages from people across the globe. Many are from people who have no wish to go public and that's fine. Many are from…

02Oct 2017 by Ronny Allan 10 Comments

Genetics and Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, Survivorship

Hereditary genetics.....where to focus In recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing and I cannot guarantee this post will contain all of them. Apparently, 5-10% of NETs are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumors (perhaps along with an associated functional hormone syndrome) and so the genetic condition if there is one, may not be known at this point. [caption id="attachment_14317" align="aligncenter" width="1280"] Overview of genes with recurrent…

30Sep 2017 by Ronny Allan No Comments

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Newsletters

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is September 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep. This is the first time the drug has ever been approved, despite being in use for over 10 years. In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not. Read more here. The European Commission approved the use of XERMELO (telotristat ethyl) for use in Carcinoid Syndrome diarrhea not adequately controlled by somatostatin analogues. Read more here. The US FDA approved an add-on indication for Lanreotide (Somatuline) for treatment of carcinoid syndrome, adding…

11Sep 2017 by Ronny Allan 7 Comments

Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

Awareness

Background When you look at how cancer is classified and broken down, you can see why Neuroendocrine Neoplasm (the overarching term for Neuroendocrine Tumour and Neuroendocrine Carcinoma) often appears unlisted in certain websites and in certain clinical publications and press releases. Moreover, it robs awareness and funding for Neuroendocrine Cancer organisations, particularly when celebrities are involved in incorrect labelling. Below, I wanted to cover why that sometimes happens but also why that is undeservedly detrimental to Neuroendocrine Cancer awareness. Cancer Categories From a histological standpoint, there are hundreds of different cancers, which are grouped into six major categories: Carcinoma Sarcoma Myeloma Leukemia Lymphoma Mixed Types You may be like me and wondering where Neuroendocrine Tumours fit into these 6 types? Clearly, they must be somewhere inside Carcinoma ...... and that…

03Sep 2017 by Ronny Allan 6 Comments

NETwork with Ronny © – Community Newsletter AUGUST 2017

Newsletters

[caption id="attachment_10710" align="aligncenter" width="500"] background scene from my Instagram account - to see more check out the newsletter. Photo credit to Nick Lucas[/caption] Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is August 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval. Click here. However, in UK, there is a threat that PRRT won't be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA). Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond to the UK's drug approver NICE's negative recommendation. …

14Aug 2017 by Ronny Allan 18 Comments

The Invisible NET Patient Population

Awareness

OPINIONI found some of the quotes from the recent NET SEER Database study (Dasari et al) very interesting. The National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program is a comprehensive source of population-based information initiated in 1973 that is updated annually. Although the study is US-based, it represents the largest study of Neuroendocrine Neoplasms (NENs) ever recorded and is therefore a good guide to what might be found beyond USA. Almost 7 times the rate recorded in the 1970s. If you want to understand the factors behind this massive increase, I covered this extensively in my post "Neuroendocrine Neoplasms – not as rare as you think". However, most things I read indicate the figures were understated (words used by several NET specialists). Despite this date now being 8 years…

01Aug 2017 by Ronny Allan No Comments

NETwork with Ronny © – Community Newsletter JULY 2017

Newsletters

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is July 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). July 26th was the 'Cancerversary' of my diagnosis - I'm still here after 7 years and I'm apparently a veritable newbie! There's some great comments on my 'I'm Still Here' post - check them out ... 'click here' NET News The following news items may be of interest: Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here. PRRT takes a step forward to being approved in USA. Click here. Ipsen launches the German version of 'Living with NETs' website. Click here. What's happening on my Blog Site? As per above, a quiet month. Due to the vagaries of…

05Jul 2017 by Ronny Allan No Comments

NETwork with Ronny © – Community Newsletter JUNE 2017

Newsletters

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is June 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: NETs in the UK National News. Great publicity. Featuring NET Patient Foundation. Click here. Personalised PRRT is highlighted. Click here. Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here. Videos from LACNETS. I've not watched them all yet due to holiday but they are always great! Click here. PRRT. News of a PRRT trial being set up for Inoperable Pheochromocytoma/ Paraganglioma. Not yet recruiting but read more here. Immunotherapy. Merkel Cell Carcinoma is already benefiting from an FDA approved drug with another pending. Check out…

17Jun 2017 by Ronny Allan 8 Comments

Immunotherapy: Studies with Neuroendocrine Neoplasms

Clinical Trials and Research, Treatment

IntroductionThere's a lot of Immunotherapy stuff out there! However, I also wanted to break it down and perhaps see if I can pick up the what, when, why, where and how in regard to Neuroendocrine Cancer. It's difficult, not least because the picture is not clear and there is no general roadmap printed, let alone one for Neuroendocrine disease. Immunotherapy for NETs was discussed at ENETS 2017 in Barcelona. The presentation that sticks out was one given by Dr Matthew Kulke, a well-known NET Specialist in Boston. My reaction to the presentation was one of 'expectation management' and caution i.e. it's too soon to know if we will get any success and when we will get it. He also hinted that it's more likely that any success will first be…

01Jun 2017 by Ronny Allan 4 Comments

NETwork with Ronny © – Community Newsletter MAY 2017

Newsletters

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). This year, it's occurred to me that I've gone beyond just being known as a 'blog' and have transformed into something with a much wider focus within the NET Community and beyond. I've added a new section called NET News. This is a catch up of stuff I've accumulated over the past month but perhaps not yet posted or simply want to emphasise what I think is significant news about NETs or might impact or influence NETs This section replaces 'Highlights' which will be renamed to 'NET Cancer Blog Activity' and cover my efforts to generate awareness and to help others. NET News The…

19May 2017 by Ronny Allan 5 Comments

ASCO 2017 – Let’s talk about NETs #ASCO17

Clinical Trials and Research

ASCO (American Society of Clinical Oncology) is one of the biggest cancer conferences in the world normally bringing together more than 30,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. As Neuroendorine Tumors is on a roll in terms of new treatments and continued research, we appear to be well represented with over 20 'extracts' submitted for review and display. This is fairly complex stuff but much of it will be familiar to many. I've filtered and extracted all the Neuroendocrine stuff into one list providing you with an easy to peruse table of contents, complete with relevant linkages if you need to read more. For many the extract title and conclusion will be sufficiently educational or at least…

02May 2017 by Ronny Allan 4 Comments

NETwork with Ronny © – Newsletter April 2017

Newsletters

Hi NETworkers! Welcome to my sixth 'Community' newsletter. This is April 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). Highlights There are two main highlights for April which stood out for me: The publication of my WEGO Health Award PODCAST. This was a radio interview prior to the announcement that I had won the WEGO 'Best in Show Community' award. It was designed around a red carpet scenario where the nominees are entering the award ceremony (everything in the virtual world of course). If you missed it, you can listen to it by clicking here. The announcement of new USA database figures for incidence and prevalence of NETs. This confirms it is now mathematically impossible for NETs not to be a rare disease in…

25Apr 2017 by Ronny Allan 15 Comments

Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and period beyond, people tend to feel emotions of shock, denial, anger, and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then.As things progressed in the weeks after 'D-Day', I started to work out the sort of things to ask but even then, it was limited. I had been referred to an experienced NET team so I felt confident they would do whatever needed doing.…

06Apr 2017 by Ronny Allan 2 Comments

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Edited and refreshed 22nd March 2024OPINION There's a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasiseSimply untrue. They are a heterogeneous group of tumours. Read more hereMyth 2: All Neuroendocrine Tumours are terminalNot true. By any definition of the word terminal in a medical diagnostic context, most NET patients have a good prognostic outlook, even those with metastatic and incurable…

04Apr 2017 by Ronny Allan 5 Comments

There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

Awareness, Patient Advocacy

Thousands of people are diagnosed with cancer every day. Many types of cancer have big patient populations due to the prevalence of diagnoses. They are so common that billions have been plowed into research and care services. Doctors are used to seeing lots of these patients and they have tried and tested treatments and care protocols. Many will come out of their treatments and be under surveillance for a period (normally 5 years) and then be declared in remission. The problem with certain cancer symptoms is that they are not always clear-cut. For example, take symptoms such as abdominal pain, flushing, diarrhea, weight loss, or fatigue - those can be caused by a whole host of things, many of which aren’t even cancer. It's difficult for any doctor to work out the…

01Apr 2017 by Ronny Allan 1 Comment

Newsletters

Hi NETworkers! Welcome to my fifth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). The highlight of the month was my attendance at the first ever Joint Patient-Physician symposium at ENETS Barcelona. I remain thankful to INCA for the honour of attending and for the experience that came with it. It was also great to finally meet other NET advocates face to face for the first time. Some of them have been great supporters since the inception of my blog and community. [caption width="500" id="attachment_9598" align="aligncenter"] with Grace Goldstein from Carcinoid Cancer Foundation[/caption] March was a slower month in blogging terms due to a number of external projects and a continuing flow of private messages. I don't have an issue with private contact…

21Mar 2017 by Ronny Allan 29 Comments

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly. However, the pressure needs to stay on, all patients, regardless of where they live, need access to the best diagnostics and treatments for them, and at the requisite…

01Mar 2017 by Ronny Allan 9 Comments

Newsletters

Hi NETworkers! Welcome to my fourth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don't have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat). Thank you all so much ♥ January's success also led to increased Facebook followers and I broke through the 4000 milestone with a plan to reach 5000 by the end of the year or before. If I grew at…

21Feb 2017 by Ronny Allan No Comments

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

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

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 his presentation on NETs at a recent 2016 Symposium, and shed light on the progress that has been made in this treatment landscape. OncLive: Please highlight some of the main points from your…

01Feb 2017 by Ronny Allan 6 Comments

Newsletters

Hi NETworkers! Welcome to my third 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). January was a month for breaking records. I recorded the biggest ever amount of views in any one day, any one week and now any one month and it will probably be a long time before they're broken again! This was mainly due to the fantastic support you showed for one particular blog post The Anatomy Of Neuroendocrine Cancer. Thank you all so much ♥ January was also a month for making new friends after being invited to speak to an audience of 30 pharma managers at Ipsen's Germany HQ near Karlsruhe. I was made very welcome by the Ipsen staff and I think it's great they want to hear the…

27Jan 2017 by Ronny Allan 2 Comments

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine Cancer

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 and the anal route is called a Colonoscopy (or a reduced version called a Sigmoidoscopy). An endoscope can also be inserted through a small cut (incision) made in the skin when…

18Jan 2017 by Ronny Allan 5 Comments

Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Awareness, Clinical Trials and Research, Living with Neuroendocrine Cancer, Treatment

[caption id="attachment_14426" width="1200"] Courtesy of Pashtoon Kasi MD on Twitter https://twitter.com/pashtoonkasi/status/1078675398601396224[/caption] 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 they are found and identified, it's also really helpful to know from the intelligence gathered, how successful the destroy…

14Jan 2017 by Ronny Allan 7 Comments

Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Surgery can sometimes be a tough call (......to cut or not to cut?) 'To cut or not to cut' is an area where I have some sympathy for physicians, particularly for surgeons who sometimes have tough decisions to make. Surgery is risky, particularly where people are presenting in a weak condition, perhaps with very advanced disease, secondary illnesses and comorbidities. I also suspect age is a factor (I was surprised to find myself considered 'young' at 55). Physicians and surgeons need to weigh up these risks and the consequences of the surgery against a 'watch and wait' or alternative non-surgical approach. Treatment is normally discussed via a 'Tumor Board' or Multi-Disciplinary Team (MDT) meeting. However, and although imaging helps, sometimes the situation is not really 100% clear until the surgeon…

01Jan 2017 by Ronny Allan 3 Comments

Newsletters

Hi NETworkers! Welcome to my second 'community' newsletter, the monthly summary of NET news in Dec 2016, views and ICYMI (in case you missed it!). December was a particularly special month. For the previous 3 months, I had been busily working behind the scenes and on my various social media presences to put on a good show for the 2016 WEGO Health Activist Awards. This paid off and I won the Best in Show 'Community' category in addition to being shortlisted as one of 5 finalists in the blog category. The community award was special because it means we all won the award as a part of this 'Community'. I've picked up a whole new bunch of friends outside the NET world bringing much-needed exposure to NET Cancer. I had a quiet week resting before I…

14Dec 2016 by Ronny Allan 4 Comments

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series

Updated 19th November 2023I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types? As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - with an incidence rate of approximately 8 per million per year. They are normally grouped together, and the definitions below will confirm why. If you think it's difficult to diagnose a mainstream NET, this particular sub-type is a real challenge.So, let's get definitions out of the way:Pheochromocytomas (Pheo for short)Pheochromocytomas are tumours of the adrenal gland that produce excess adrenaline. They arise from the central portion of the adrenal gland, which is called the adrenal medulla…

06Dec 2016 by Ronny Allan 8 Comments

Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016

Inspiration, Patient Advocacy

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Very happy to win the WEGO 2016 Best in Show Community which is some ways is a recognition for my blog based on the fact is at the core of what I do and in many ways, the other apps are (currently) just 'fronts' for this output. Whether you read my blog direct from WordPress, Facebook, Twitter, Pinterest or any other platform you find it, you are all members of this award-winning community! My WEGO Profile is here - look out for the updates! I'll expand this blog once the dust settles as this award opens up new avenues for the Neuroendocrine Cancer (NETs) and I'll be involved in new and exciting…

02Dec 2016 by Ronny Allan 3 Comments

Newsletters

[caption id="attachment_8478" align="aligncenter" width="600"] Please share me![/caption] Hi, welcome to my first newsletter, a pilot for a monthly summary of NET news, views and ICYMI (in case you missed it!). What a month November has been - we had NET Cancer Day build up and I've been working hard to put on a good show for the 2016 WEGO Health Activist Awards (results expected around 6/7 Dec) whilst at the same time maintain my other campaigning activity across a wide range of social media platforms. Due to increased activity, I recorded the second highest monthly viewing figures ever - over 13,000 hits on my blog site in one month (and even more on Facebook). Not bad for a little backstreet disease - but my intention is to take it to the high…

30Nov 2016 by Ronny Allan 7 Comments

NET Syndromes – chicken or egg?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

We’ve all heard the age-old question about the chicken and the egg? Scientists claimed to have 'cracked' the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken's ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it! On a similar subject, I'm often confused when someone says they have been diagnosed with 'Carcinoid Syndrome' and not one of associated 'Neuroendocrine Tumours'. So which comes first? I guess it's the way you look at it. In terms of presentation, the syndrome might look like it comes first, particularly in cases of metastatic/advanced disease or other complex scenarios. Alternatively, a tumour…

16Nov 2016 by Ronny Allan 16 Comments

“You must be doing OK, you’ve not had chemotherapy”

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

If there's a word which is synonymous with cancer, it's chemotherapy. It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'.I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease. Cue - lengthy explanation! I wasn't annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of systemic chemotherapy. If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair.Sure, chemotherapy is not the nicest treatment to receive, and it does…

10Nov 2016 by Ronny Allan 5 Comments

One every 2 hours

Awareness

I've made no secret of the fact that I don't believe Neuroendocrine Cancer is rare and you can read why in some detail in my article Neuroendocrine Cancer - not as rare as you think. Better diagnostic technology, greater awareness and better recording of the correct disease in national cancer registries. The latest figures for Public Health England (covering ~90% of UK), indicate there are now 4800 diagnoses of NETs every year, i.e. more people than ever are being diagnosed, It is calculated from an incidence rate of 9/100,000 (using the 2011 census for England of 53,000,000) The new figures do not include Lung Neuroendocrine Carcinomas (LCNEC and SCLC) - so it is understated. This would appear to debunk the myth that the condition is rare given that the…

Tag: Neuroendocrine carcinoma (NEC)