Category: Survivorship

Proton Pump Inhibitors – the NET Effect


Proton pump inhibitors (PPIs) reduce the production of acid by blocking the enzyme in the wall of the stomach that produces acid. Acid is necessary for the formation of most ulcers in the oesophagus, stomach, and duodenum, and the reduction of acid with PPIs prevents ulcers and allows any ulcers that exist in the oesophagus, stomach, and duodenum to heal. PPIs are prescribed to treat acid related conditions such as:

  • Esophageal duodenal and stomach ulcers
  • NSAID-associated ulcer
  • Ulcers
  • Gastroesophageal reflux disease (GERD)
  • Zollinger-Ellison Syndrome – ZES (note this is a syndrome associated with a functioning duodenal or pancreatic NET known as a Gastrinoma)
  • They also are used in combination with antibiotics for eradicating Helicobacter pylori, a bacterium that together with acid causes ulcers of the stomach and duodenum for eradicating H. pylori, a bacterium that together with acid causes ulcers of the stomach and duodenum.

Although this should not be considered a full list applicable to all countries, the drugs tend to be prescribed or purchased under the following names:

  • Aspirin and Omeprazole (Yosprala)
  • Dexlansoprazole (Dexilent, Dexilent Solutab)
  • Esomeprazole (Nexium, Nexium IV, Nexium 24 HR)
  • Esomeprazole magnesium/naproxen (Vimovo)
  • Lansoprazole (Prevacid, Prevacid IV, Prevacid 24-Hour, Zoton FasTab)
  • Omeprazole (Prilosec, Prilosec OTC, Losec, Mepradec)
  • Omeprazole and sodium bicarbonate (Zegerid, Zegerid OTC)
  • Pantoprazole (Protonix, Pantoloc Control)
  • Rabeprazole (Aciphex, Aciphex Sprinkle, Pariet)

PPIs have revolutionized the management of acid-related diseases and there is evidence supporting their superior efficacy and overall safety profile. Unfortunately, it would appear this has possibly led to their overuse and inappropriate use. When used appropriately, the overall benefits significantly outweigh the potential risks in most patients.

One US pharmacist magazine has stated that almost half of all patients taking a PPI do not have a clear indication. It follows that PPIs may not be the appropriate treatment for many people. The American Gastro Journal nicely covers this issue – click here.

What is the connection with NETs?

Millions of people will have been prescribed these drugs for the various reasons listed above and as I said above quoting from a reputable US Pharmacist magazine, perhaps many do not have a clear indication for their use. So this issue is much wider than NETs.

Above, you can see a direct link to duodenal/pancreatic NET syndrome – ZES. However, there is also a known link between the use of PPIs and the effect on the Chromogranin A blood test, the most common tumour marker used in the diagnosis and surveillance of many types of NET. Several studies have concluded that PPIs falsely elevate Chromogranin A – read more here.

Any other risks of using PPIs?

There are several well-known risks of using PPIs in the long-term. However, many drugs have side effects, often the risks of not taking a particular drug can be outweighed by taking it. I will not comment further but leave you with some references to read yourself:

1. From the UK National Health Service (NHS). They took a balanced view adding the risk element I described above. Importantly they stated that PPIs are not usually intended to be taken long-term. Read more here. The British Medical Journal (BMJ) published the study referred to by the NHS here.

2. The NHS also published an article based on the results of a US study. Again, they indicated the study had similar limitations to the one above. Read more here (links to the study contained within).

3. There are literally dozens of similar articles but most seem to point to these two studies. However, it should also be noted that the US FDA has issued safety warnings about long-term use of PPIs. This is covered in the aforementioned US Pharmacist magazine article here.

Are there alternatives to PPIs?

Firstly, you should NEVER stop taking PPIs without speaking to the doctor who prescribed them.

There’s a class of drugs known as Histamine H2 Receptor Antagonists (H2RA) that reduce the amount of acid produced by the cells in the lining of the stomach. They are also commonly called H2 blockers. They include Cimetidine (Tagamet, Tagamet HB), Famotidine (Pepcid, Pepcid AC), Nizatidine (Axid) and Ranitidine (Zantac). Brand names may differ from country to country. From what I read, they are not as powerful as PPIs but for some people they may prove adequate. Read more about H2 blockers here.

So I can just stop taking PPIs and start taking H2 blockers?

NO. As I said above, you should never discontinue a prescription for PPI without talking to your doctor. However …. it’s not common knowledge that suddenly stopping PPIs is not a good idea – you must gradually reduce (i.e. taper off).

Why taper? PPIs block the production of acid in your stomach which can help with the symptoms but that also turns on the release of gastrin. This is not ideal for two reasons according to NOLANETS:

  1. When you try to get off of PPI, the gastrin stimulates acid production and stays elevated, potentially for several months (depending on how long you were on the PPIs). This makes your reflux worse than before and makes getting off of this medication very difficult. Gastrin also stimulates Chromogranin A thus why this can be elevated in patients who have been taking PPIs.
  2. Gastrin also acts like a growth factor and stimulates the growth of ECL cells (enterochromaffin like cells). Clearly this does not happen to everyone on PPIs. However, and as per the NHS advice above, PPIs should not be considered a long-term solution except for conditions for which they are clinically indicated (e.g. Barrett’s oesophagus, Gastrinoma (Zollinger Ellison Syndrome).

What are NET Specialists saying about this?

The best source of information on this seems to be in two main areas:

1. One is NOLANETS (Dr Eugene Woltering et al) who appear to be leading the way on identifying those who may have a clinical indication for use of H2 blockers rather than PPI and this NET Specialist organisation has produced a sheet showing how to taper people off the drug and onto the less risky H2 blockers. Read the NOLANETS “Get off PPIs” Sheet by clicking here. They state that PPI use increases circulating gastrin which in turn increases the amount of acid in the stomach. The increase in gastrin also stimulates the enterochromaffin like cells (ECL) of the stomach to produce Chromogranin A and this explains why it can be elevated in PPI users. The US Pharmacy magazine quoted above, appears to confirm this thinking.

2. The European NET Society (ENETS) discusses the issue in their guidelines but only in relation to Zollinger-Ellison Syndrome (ZES). This is a direct quote from ENETS 2016 Guidance – “The widespread use of PPIs is a major problem for the diagnosis of ZES because these drugs have an extended duration of action (up to one week), they cause hypergastrinemia in 80-100% of all normal subjects, and can confound the diagnosis. Furthermore, if PPIs are abruptly stopped in a true ZES patient, anti-peptic complications can rapidly develop, and therefore some expert groups have recently recommended that the diagnosis of ZES should be established without stopping the PPIs or by attempting to taper the dose. Unfortunately, as suggested in a number of recent papers, in most patients, the diagnosis cannot be easily established without an interruption of the PPIs. Furthermore, a secretin test cannot be used while a patient is taking PPIs because it can result in a false positive test. Other tumour markers such as serum chromogranin A were found to be not reliable for the diagnosis of ZES patients, as up to 30% have normal plasma chromogranin A levels. PPIs also lead to increased chromogranin A levels on their own. It is therefore recommended that if the diagnosis is unclear, the patient should be referred to a centre of excellence and if this is not possible, PPI withdrawal should be cautiously performed (in an asymptomatic patients with no active acid-peptic disease or damage) and with adequate cover by H2 blockers and careful patient monitoring”.

PPIs and PERT

I have anecdotal evidence that people are being prescribed PPIs alongside Pancreatic Enzymes Replacement Therapy (e.g. Creon, Nutrizym etc). While most types of PERT are gastro-resistant, a high acid environment may impair their efficacy. The rationale behind using PPI (or H2 blocker) is to decrease the acid level and allow the PERT to work better. Given the research behind this article, I would certainly challenge the use of PPI alongside long-term use of PERT.

Summary

The aim of this article is not to scare anyone, I’ve been careful with the sources, quotes and facts. Like anything in life (including the medical world), there are risks and knowing about them allows us to manage these risks in conjunction with our doctors and healthcare specialists. If you are concerned about anything you find inside this article, I suggest you speak directly to your doctor/specialist for advice.

Personally speaking, I would like to see more from the NET Specialist community on this issue.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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RonnyAllan.NET – Community Newsletter Covering November 2018

Newsletter Nov 18
Summary for November 2018

NET News

1. I supported the annual NET Cancer Day event in my own style, contributing SIGNIFICANTLY to both Facebook and Twitter social media platforms.  My twitter accounts were the biggest contributors to the #LETsTalkAboutNETs and #NeuroendocrineCancer hashtags for several days straddling the 10th Nov and between this and my Facebook account, I accounted for a significant proportion of the data recently published by INCA.   I almost got to my 1 million ‘reach’ on twitter in ONE WEEK straddling NET Cancer Day (see below) – just a wee Scottish guy with a less common disease and a computer. Curiously not mentioned by INCA in their recent newsletter.  So I thought I’d mention it instead.

Mind you, every day is NET Cancer Day on my social media platforms. I push on.

Every day is NET Cancer Day

 

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Join my twitter army for a new paradigm in NETs awareness

2.  Thanks for supporting my photo on Facebook and Twitter – it has become the most liked post on my Facebook ever with over 1000 likes.  You can link directly to it by clicking here:

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3. Personal NET News

My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. They have dismissed PRRT as an option at this stage (kept in reserve) and it looks like surgery might be on the cards.  You can read about my Ga68 PET/CT experience here and my fibrosis issues here.  I recently has a Renal MAG3 nuclear scan to determine the efficacy of my kidney function – waiting on results but expecting good news.

fibrosis an unsolved mystery

Looking for Advice?

If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.

If you are diagnosed and looking for a NET Specialist and the sort of questions to ask – this article will help.

Blog Site Activity in November

Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

Neuroendocrine Cancer is normally slow growing Neuroendocrine Cancer Syndromes: it may be slow growing BUT …..  My new campaign to highlight issues surrounding living with Neuroendocrine Cancer
pancreatic vs neuroendocrine Awareness article to illustrate the differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary.
fibrosis an unsolved mystery Updated version of NET Fibrosis.
slow growing cancer Updated version of NET – normally slow but always sneaky
witches brew Updated version of NET Syndromes – a witch’s brew
Your-favourite-articles-1.jpg Your favourite posts.  Revised list of anything above 5000 hits. I now have three articles with over 20,000 views.
Newsletter Oct 18
 October 2018 Newsletter in case you missed it.
caricture For most of November, my name branded facebook page was the fastest rising public Facebook page on the planet about NETs. I use this page to like and comment on other healthcare pages (it draws in interest in NETs). Some of you will also recognise it as the main ID inside my closed group. It’s also a backup to this page (NETCancerBlog) as you will not always see stuff on my main page due to Facebook gremlins.

(Don’t unlike, I need your strength in numbers to generate awareness).

There were many distractions in November 2018, I’m actually quite busy with external projects but still managed over 35,000 views, the second biggest monthly figure. Here are the top 10 most read articles which contributed to last month’s figures:

Home page / Archives More stats 2,936
Neuroendocrine Cancer – normally slow but always sneaky? More stats 2,321
Neuroendocrine Cancer Syndromes: A Witch’s Brew More stats 1,473
Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it. More stats 1,390
Living with Neuroendocrine Cancer – Home Page More stats 1,345
Neuroendocrine Cancer – Hormones More stats 1,333
Neuroendocrine Cancer – is normally slow growing BUT ….. More stats 1,305
Neuroendocrine Cancer – tumour markers and hormone levels More stats 1,026
Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD! More stats 959
Pancreatic Cancer vs Neuroendocrine Tumors of the Pancreas More stats 944
The Human Anatomy of Neuroendocrine Cancer More stats 875

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 (but perpetual) awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer


  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Private Facebook Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).

The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event).
Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 30th November, there were almost 2200 people in the group. It’s the fastest growing group in the world for NETs.

And I’m working on a guest Gastroenterologist for a third chat.  To be confirmed.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that and with much wider and compelling messages, particularly to the outside world.  Doing that is a way to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • I’m working on a video shoot next week for a Pharma company who are looking at how cancer patients live from day to day.  More info later when I am at liberty to tell you.
  • I’m working on an association with a Pharma company to help with patient portals.  Early days.
  • I’m working on an association with a healthcare company to help with their marketing.
  • 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/) – They 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.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice.
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 244 times on my personal account which led to over 117,000 views of my tweets. I was mentioned 203 times by other tweeters, 2331 people looked at my profile (where it mentions NETs) and I gained 64 new followers. My weekly ‘reach’ is consistently between 400,000 and 800,000, heading for 1 million soon. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
  • proud to be

WANT TO JOIN MY TWITTER ARMY?  Just ask. 

  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 630 other subscribers.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2016 Best in Show: Community and 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
wego blog 2018 winner
Click the picture to watch the video of the live announcements

Social Media and Stats

Blog Milestone. At the end of last month, I accelerated past 777,000 blog views! Thank you all so much ♥ Keep sharing! On track for one million in the latter half of 2019.

Facebook Milestone. Almost 7200 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

Thanks for your great support in last month. Onward and upwards!

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life


Neuroendocrine Cancer – is normally slow growing BUT …..



I have a lot of be thankful for – I’m still here for starters!


BUT

……… here’s a list of 10 things I’m NOT thankful to Neuroendocrine Cancer for!

Thanks for growing inside me for years before making your vague announcement

Sorry too late, I’m metastatic and around 50% of patients will be at diagnosis (so I’m not alone!). It’s very SNEAKY!

No thanks for making a right mess inside my body!

I mean, I look really good, I look really well, but you should see my INSIDES

No thanks for generating fibrosis throughout my mesentery and retroperitoneum!

I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important!  Fortunately I had a surgeon who had operated on many NET patients and has seen this issue before.  After my first surgery, he described it as a “dense fibrotic retroperitoneal reaction encircling his aorta and cava (inferior vena cava (IVC))”. My surgeon was known for difficult and extreme surgery, so as part of the removal of my primary, he also spent 3 hours dissecting out the retroperitoneal fibrosis surrounding these important blood vessels and managed 270 degree clearance. The remnant still shows on CT scans. Some of the removed tissue was tested and found to be benign, showing only florid inflammation and fibrosis (thankfully).  That said, the abstract papers above has led me to believe that my retroperitoneal fibrosis is clinically significant.  In fact I have spent the last 3 months worrying about some of it growing into reach of important vessels and only just been given the all clear (for now). 

fibrosis an unsolved mystery

No thanks for screwing up some of my hormones

There are many hormones involved with Neuroendocrine Cancer which is unique in that different types can result in elevated levels of different hormones, often more than one is involved.  Serotonin has caused fibrosis in my retroperitoneal area and is currently threatening important vessels. I don’t really need that right now!


No thanks for the ongoing symptoms and side effects

I was showing symptoms of a Neuroendocrine Cancer syndrome known as Carcinoid Syndrome (currently) such as flushing and diarrhea and fatigue was probably there too, but these were thought to be something else or ignored (by me).  I don’t suffer too much nowadays other than side effects of the disease or the treatment I’ve had or receiving.  However, I know from speaking to many patients the effects of the various syndromes associated with Neuroendocrine Cancer can be pretty debilitating and oppressive to quality of life.

These syndromes can be so strange and so weird, they can be very difficult for patients, nurses and doctors to treat. They can be a real ‘witch’s brew’.

Surveillance and treatment for life SUCKS!

But I need constant surveillance, it’ll keep me alive.

No thanks for the weight loss

As if I needed it

No thanks for the hypothyroidism

Another pill for life. I have a left-sided thyroid lesion and my treatment also messes with my hormone levels.

No thanks for increasing my diabetes risk

No thanks for pushing me into pre-diabetes. My blood sugar is spiking, most likely due to treatment.

No thanks for making me retire early

I loved my job but not if it was going to kill me. I made my own decision  based on how I could survive in a financial sense. Made easier as I was only 8 years from retirement but I guess I’m one of the lucky ones despite the fact I took a big hit on the income going into my bank account.

The truth is that many people still need to work whilst struggling with side effects of the cancer and its treatment. Getting some form of financial assistance from the government is not a done deal.

Neuroendocrine Cancer is a very expensive disease to treat.

This is fast becoming a big issue regardless of country and regardless of healthcare system in place. However, in privately funded healthcare, it can be exacerbated by the level of insurance cover. Read more about financial toxicity for cancer patients which is a growing problem worldwide.

……….. and no thanks to anyone who says it’s a “good cancer“


Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. Help me build up my new site here – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Sign up for my twitter newsletter

Check out my Podcast Interview (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!


wego-blog-2018-winner


patients included

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RonnyAllan.NET – Community Newsletter Covering October 2018


Summary for October 2018

NET News

Several headlines covering the past month:

1. The annual NANETS symposium took place last month and I constructed an article of several important outputs.  One day I might make it there, been to ENETS twice.  Would love to attend UKINETS but they don’t seem very ‘patient’ friendly.

2. I spoke alongside IPSEN Pharma SAS (Global HQ) at the annual Eye for Pharma Patient Summit. It was an honour and a privilege to stand in front of 200 people to tell my personal story plus my involvement in LivingWithNETs.com.  The audience was a mix of the Pharmaceutical industry, Healthcare industry and Patient Advocates from many different illnesses.  A fantastic and real awareness opportunity which is part of my promise to take NET awareness to new audiences rather than just share stuff between NET patients and advocates.

the best kind of story – a 2 legged one

3. I’m still reeling from winning the 2018 WEGO Blog Award and if you missed the live announcement, you can listen to the quite short video clip here.

Personal NET News

My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. They have dismissed PRRT as an option at this stage (kept in reserve) and it looks like surgery might be on the cards.  You can read about my Ga68 PET/CT experience here and my fibrosis issues here.

Looking for Advice?

If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.

If you are diagnosed and looking for a NET Specialist and the sort of questions to ask – this article will help.

Blog Site Activity in September

Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

Neuroendocrine Cancer Syndromes: A Witch’s Brew.  My 2018 themed Halloween post with a serious awareness message.
How to talk to a cancer patient without being a complete twit – a serious but partly light hearted slant on communications with a cancer patient, includes doctor-patient communications.  Bonus article about signs you need a new doctor.
Living with Cancer – Worrier or Warrior ? worry and anxiety is common with cancer patients but can you worry too much to the point it is counter productive?  Even warriors can worry.
Short Update from NANETS 2018
On your Bike – personal story about trying to live better with cancer and its consequences
Your-favourite-articles-1.jpg Your favourite posts.  Revised list of anything above 5000 hits. I now have three articles with over 20,000 views.
September 2018 Newsletter in case you missed it.

There were many distractions in October 2018, I was very busy with Ipsen speaker stuff plus a holiday in Scotland but still managed over 32,000 views, the third biggest monthly figure. Here are the top 10 most read articles which contributed to last month’s figures:

Neuroendocrine Cancer – Trick or Treat? More stats 1,535
Living with Neuroendocrine Cancer – Home Page More stats 1,116
Neuroendocrine Cancer Syndromes: A Witch’s Brew More stats 1,065
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 866
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 864
Neuroendocrine Cancer – Ronny Allan: Background to my Diagnosis and Treatment More stats 817
‘Chinese Dumplings’ and Neuroendocrine Cancer More stats 809
Neuroendocrine Cancer – Short Update from NANETS 2018 More stats 758
Ever wonder what caused your NET? More stats 722
Gallium 68 PET Scans – Into the Unknown More stats 708

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 (but perpetual) awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer


  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Private Facebook Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc). The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event).
Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 31st October 2018, there were almost 2000 people in the group. 

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that and with much wider and compelling messages, particularly to the outside world.  Doing that is a way to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I spoke at the Eye for Pharma event in London alongside an important Pharma NET contact. See above.
  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • 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/) – They 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.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice.
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 190 times on my personal account which led to over 117,000 views of my tweets. I was mentioned 134 times by other tweeters, 1524 people looked at my profile (where it mentions NETs) and I gained 50 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.

WANT TO JOIN MY TWITTER ARMY?  Just ask. 

  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 630 other subscribers.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2016 Best in Show: Community and 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
wego blog 2018 winner
Click the picture to watch the video of the live announcements

Social Media and Stats

Blog Milestone. At the end of last month, I accelerated past 741,000 blog views! Thank you all so much ♥ Keep sharing! On track for one million in the latter half of 2019.

Facebook Milestone. Almost 7000 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

Thanks for your great support in last month. Onward and upwards!

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life


Neuroendocrine Cancer: A Witch’s Brew of Signs and Symptoms


cancer growth

One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people.  As it’s a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after.

The cancer can often be uncannily quiet, but the tumours can be ‘functional’ and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma.   In addition to common symptoms of flushing and diarrhea, others include generally feeling weak, fatigued, pain, agitated, anxious, dizzy, nauseous, acid reflux, skin irritation, anaemic, lose weight, gain weight, low blood sugar, high blood sugar, heart palpitations, headaches, sweating, high blood pressure. Its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it.  For those looking for a diagnosis, it can be very frightening.

One or more of the NET syndromes can be a weird concoction of strange, powerful or terrifying ingredients, designed to make you very ill; and doctors will be confused. 

Certain types of Neuroendocrine Cancer were once referred to by the out of date term of ‘Carcinoid‘ – now correctly referred to as a NET prefixed by its anatomical primary location. For the time being, the term Carcinoid Syndrome associated with these types of NET persists and this is known to be capable of over secreting (amongst others) the vasoactive substance called serotonin. It is commonly thought that serotonin is the cause of the flushing, but this is only partially correct, the flushing also results from secretion of kallikrein, the enzyme that catalyzes a conversion to bradykinin, one of the most powerful vasodilators known.  Other components of the carcinoid syndrome are diarrhea, probably caused by the increased serotonin, which greatly increases peristalsis, leaving less time for fluid absorption, a pellagra-like syndrome, probably caused by diversion of large amounts of tryptophan from synthesis of the vitamin B3 (Niacin), which is needed for NAD production (oxidized form of B3). It also causes fibrotic lesions of the endocardium, particularly on the right side of the heart resulting in insufficiency of the tricuspid valve and, less frequently, the pulmonary valve and, uncommonly, bronchoconstriction. Other fibrosis spells include mesenteric and retroperitoneal desmoplasia which have the potential to dangerously obstruct important vessels and cause general discomfort at best.

 

serotonin

 

Carcinoid Syndrome is one of the most powerful and dangerous ‘witch’s brews’. 

The classic carcinoid syndrome includes flushing (80%), diarrhea (70%), abdominal pain (40%), valvular heart disease (40% to 45% but reduced to 20% since the introduction of somatostatin analogues), telangiectasia (25%), wheezing (15%), and pellagra-like skin lesions (5%). Carcinoid syndrome, first described in 1954 by Thorson and co-workers, has the following features: malignant neuroendocrine tumour of the small intestine, normally with metastases to the liver, sometimes with valvular disease of the right side of the heart (pulmonary stenosis and tricuspid insufficiency without septal defects), peripheral vasomotor symptoms, bronchial constriction, and an unusual type of cyanosis. One year later, Dr. William Bean gave the following colorful description of carcinoid syndrome:

“This witch’s brew of unlikely signs and symptoms, intriguing to the most fastidious connoisseur of clinical esoterica—the skin underwent rapid and extreme changes resembling in clinical miniature the fecal phantasmagoria of the aurora borealis.” 

Other witch’s brews include the group of NET syndromes associated with over-secretions of Insulin, Glucagon, Gastrin, Vasoactive Intestinal Peptide (VIP), Pancreatic Polypeptide (PP) and Somatostatin.  Read more about these and other syndromes here.

NET Syndromes

One of the most scary witch’s brews is the group of symptoms associated with one of the most uncommon types of NET, the catecholamine and metanephrine (adrenaline and noradrenaline) secreting tumours known as Pheochromocytoma and Paraganglioma. These tumours are likely to cause a barrage of symptoms such as High blood pressure, Heavy sweating, Headache, Rapid heartbeat (tachycardia), Tremors, Paleness in the face (pallor) and Shortness of breath (dyspnea).

spotlight on pheo para

All of the above is a diagnostic nightmare for those who have the symptoms and remain undiagnosed – no fun for the doctors either – this why we need so much more awareness and education – it’s one of the key aims of all my social media sites.  Another aim of my sites is to support those who are diagnosed as these symptoms can continue following diagnosis and treatment. Many NET patients need constant surveillance and follow-up, many for life.

This is a very spooky disease, it will slowly grow without you knowing, it will mess with your body and mind, and if left alone to plot its devious and destructive course, it will kill.  Some are faster growing but they have the same traits – they just kill faster.  Share this post and potentially save a life.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Ronny Allan is an award winning patient leader and advocate for Neuroendocrine Cancer.

 

 

 

Living with Cancer – Worrier or Warrior?


WORRIER OR WARRIOR (2)

If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers.  I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply ‘wired’ that way.  I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn’t worry about a single thing?  However, the extent of worrying can often have a negative effect on quality of life. You’re not going to stop worrying by simply reading this article but if you read no further, at least check out the lead graphic, it might help putting things into perspective.

Warriors

I used to do that for a living so I guess I’m an automatic fit, right? Believe it or not, professional ‘warriors’ also worry about stuff but they don’t like showing it (one of the reasons there are serious PTSD issues happening currently).

Despite the protests at the use of ‘war’ metaphors, many cancer patients do see themselves as ‘warriors’.  People probably label me as one but …… spoiler alert, behind my positive exuding exterior, there’s a man worried about a problem which might decrease quality of life and also a man worried about potential surgery most likely needed to correct the issue. We all worry but it’s the way we handle stress that is important.  Not talking about it is never a good option.

poker face
Poker Face or Cancer Card

I also think ‘Warriors’ can sometimes be complacent and for a cancer patient, this can be detrimental to their health.  In a previous life, nothing was going to stop me getting on with life, nothing was going to stop me going to work, nothing was going to stop me completing my mission.  One day, some of my co-workers complained about my constant sneezing, coughing and sniffing. I told them the only way I was leaving the building would be on a stretcher having lost consciousness or in a body bag.   I said it whilst I continued typing up a report which was my mission for that day.  I said it without any hint of joviality in order they knew that I was deadly serious.  Little did I know that my ‘poker face’ was just about to become seriously deadly.

We’ve all read the blogs and memes on Facebook…. ‘kicking cancer’s ass‘, etc etc. There’s even twitter handles, Facebook sites, blog names all with the word ‘warrior’ in the title. Nothing wrong with that, nothing wrong with having a positive attitude. The only thing potentially wrong with that, is becoming too complacent about the danger of cancer. Cancer will kill you whether you are a ‘warrior’ or a ‘worrier’.

Worriers

I come into contact with a lot of Neuroendocrine Cancer patients, either from a thread in my group, my blog site or my Facebook site(s).  I get a substantial amount of private messages from patients including on twitter. Many of them are from people who are ‘worried’ – these can often be the toughest conversations I have.

People have many different reasons for worrying ,and there can be totally different factors involved at diagnosis than those surfacing during and after treatment. We worry about a diagnosis and what it actually means, we worry about the treatment we are given, and then we worry about the cancer coming back, this is all very natural. Some people have taken a considerable amount of time to get a diagnosis and their stress levels are already high.  Some are young with a long life ahead of them, that is really tough. Some have young children and are worried about their future as well as their own, that is also really tough. There are many other scenarios adding further layers of complexity to an individual’s situation.

I have no magic answer for someone who is constantly worried except to say that they must do something about it as it’s not a good place to be.  I once dabbled in this area by writing an article with 8 tips for conquering fear, this was specifically aimed at my own cancer type but I guess it could apply to many others.

Many cancers are not as ‘black and white’ as a lot of people think, i.e. you are diagnosed, it is treated, you are observed, you are cured.  Neuroendocrine Cancer is quite definitely a ‘grey’ cancer, i.e. many people take some time to be diagnosed, many are diagnosed at the incurable stage, the treatment regimes differ depending on the primary, stage, grade and many other factors, you are observed for much longer periods than the average cancer patient, perhaps for life, and for many, there is no cure.

For those with incurable conditions, the stress levels can be higher and for longer, potentially leading to other illnesses. The psychological impact of long-term cancer is a developing but as yet unmet need in the Neuroendocrine world and I suspect elsewhere.

Don’t forget the carers and caregivers.  I think a lot of carers/caregivers can also be under some stress and worry, I certainly see this a lot in the Neuroendocrine community.

Summary

I think there’s a fine line between being a ‘warrior’ or a ‘worrier’ and I believe many people flit between the two quite easily.  I think many people might actually be in the middle ground, having accepted their diagnosis, decided it was just another chronic illness and try to live life as best they can.

Cancer can be a very individual disease, not just the different types and sub-types, but also stages, grades, pre-existing medical issues, age, gender. To add to the mix, I think it’s also true to say that how people handle the stress, how people cope is another dimension to be considered.

For those who are predominately ‘warriors’, please don’t forget to look after yourself.  For those who are predominantly ‘worriers’, the lead graphic might help put things into perspective.

Take care all

 

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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Neuroendocrine Cancer – Short Update from NANETS 2018

NANETS 2018

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, one can keep up to speed on what is or has been discussed.  One day, NANETS and ENETS will be sufficiently advanced that we can all watch the presentations from the comfort of our own homes (you heard it here!)

I’ve put together a collection of things I found interesting and offer them here for your perusal and selection via links.

One of the first issues to discuss was the confirmation of the new NANETS management team and board – you will recognise most names here:

Officers (2018 to 2020 Term):

    • Chair: James Howe, MD The University of Iowa Carver College of Medicine
    • Vice Chair: Emily Bergsland, MD The University of California San Francisco School of Medicine
    • Secretary: Jonathan Strosberg, MD Moffitt Cancer Center
    • Treasurer: Pam Kunz, MD Stanford University Medical Center

Board of Directors:

      • Jennifer Chan, MD, MPH (2018-2020) Dana Farber Cancer Institute
      • Thorvardur Halfdanarson, MD (2018-2020) The Mayo Clinic
      • Daniel Halperin, MD (2015-2019) University of Texas MD Anderson Cancer Center
      • Erik Nakakura, MD, Ph.D. Research Committee Board Representative (2018-2020) The University of California San Francisco School of Medicine
      • Rodney Pommier, MD (2018-2020) Oregon Health and Science University
      • Diane Reidy, MD (2015-2019) Memorial Sloan Kettering Cancer Center
      • Simron Singh, MD, Conference Committee Board Representative (2018-2019) Odette Cancer Center at Sunnybrook Health Sciences Center
      • Michael Soulen, MD (2018-2020) The Hospital of the University of Pennsylvania
      • James Yao, MD (2018-2020) University of Texas MD Anderson Cancer Center

Abstract Selection

A selection of poster abstracts below.  There was a lot more but these ones made output on twitter so I guess these were headline acts and probably of interest to patients. The extract texts/short videos I’ve included are probably all that most patients will need but when I have electronic access to the posters, I will update with links if possible and repost for those who would like to see the full detail.

The Value of Genetic Testing in NETs

This cover two posters, one for Neuroendocrine Carcinoma (very interesting) and the other covering Neuroendocrine Tumours (i.e. well differentiated NETs).  Click on the title above or click here.

An Update on Lung NET Guidelines

Some interesting snippets here and an indication that the most comprehensive Lung NET Guidelines are those produced by ENETS by Caplin et al.   Click on the title above or click here.

A Comprehensive Look at Update and Developments in NETs (Dr Thorvardur Haldanasron).

Interesting summary of new stuff in trials. Plus some interesting bits on SI NETs and pNETs.  Click on the title or click here.   There’s also a short video of Dr Haldanasron (slightly different content) – click here.

Sequencing of Lanreotide Can Improve Outcomes in Patients With Advanced GEP-NETs

Interesting trial output looking at the potential benefits of Lanreotide after Octreotide.  Click on the title or click here.

Dr Scott Paulson on Current Challenges in the NETs Treatment Landscape

Interesting and as with many specialist videos I’ve seen, sequencing of treatment remains challenging.  Text and video inside.  Click on the title to see more or click here.

Debating Best First-Line Treatment in Well-Differentiated G3 NENs

As you will know from my staging and grading article, there is now a Grade 3 well differentiated tumour status (called a NET rather than a Neuroendocrine Carcinoma).  However, there is not yet enough data to work out the optimum treatments, which may, in certain circumstances, be different from their poorly differentiated counterparts (Neuroendocrine Carcinoma).  Click on the title above or click here.

Examining the Benefits of Integrative Oncology, Nutrition in NETs

An unmet need – very interesting text.  Click on the title or click here.

Dr Heloisa Soares Discusses the Roles of Somatostatin Analogs in GEP-NETs

Dr Soares discusses the two roles of Somatostatin analogs: treating symptoms related to the tumors and controlling tumor growth.  Complete with video. Click on the title or click here.

Analysis Demonstrates Effectiveness, Patient Satisfaction With Lanreotide in GEP-NETs

Interesting data analysis about Lanreotide.  Click on the title or click here.

Ipsen Presents Data on Somatuline Depot at the North American Neuroendocrine Tumor Society (NANETS) Annual Symposium

Some very interesting stuff in here including comparisons with Octreotide.  Click on the title or click here.

Immunotherapy -Hits, Misses With New Therapies for Neuroendocrine Tumors

You may be prompted for a login, if so, let me know, I will post you the content.  The ‘misses’ is mainly the fact that Keytruda (Pembrolizumab) does not look good as a single agent treatment for high grade NEC. Headline is “Pembrolizumab, though generally well tolerated, showed limited activity as a single agent in high-grade neuroendocrine neoplasms (NENs) in this study,” Arvind Dasari, MD, of MD Anderson Cancer Center in Houston, and colleagues concluded.”  Some other interesting points though.   Click on the title above or click here.

 

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Please Share this post

 

Neuroendocrine Cancer – on your bike!

20181007_160547.jpg

There’s a Brit saying known as “on your bike” (sometimes colloquially called “on yer bike“).  It basically means “go away and stop bothering me” but there are other definitions including some ‘Anglo-Saxon’ versions (I won’t repeat those here!)

When I moved to my current home nearly 7 years ago, the removals lorry unloaded our rather dusty bikes (pedal cycles) and stuffed them in the garage where they mostly remained until this year.  A couple of months ago, I dusted them off, repaired punctures etc, and basically started putting them to better use.  In fact, Chris got a new one out of the deal! I’m reasonably fit (considering) but finding it so easy to opt for the sofa and there’s always something worth watching on TV, or something to do on my computer.  My personal trainer (Chris ♥) tends to provide some motivation, so it felt good that the recent bike idea came from me rather than from her.

However, some of the personal motivation came from a recent ‘brush’ with potential diabetic problems.  My blood glucose test has been spiking in the last 12-18 months and an HbA1c in May (a better guide) put me just inside pre-diabetic range. This prompted me to look more carefully at diet and exercise. I need to do this without losing too much weight though, I’m still struggling to put the weight back I that I lost from the June chest infection.

I have so say I’m enjoying my new exercise and have had some nice bike rides in the local forests.  I’ve since had a new HbA1c test which is back in normal range so I guess something is making it spike.  Lanreotide is my first guess – you can read more about Diabetes and NETs by clicking here.

I’m working with my doctors on the issue.

In the meantime, I’m getting on my bike and so can Neuroendocrine Cancer!

Exercise – it’s a free prescription.

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

wego-blog-2018-winner


patients included

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RonnyAllan.NET – Community Newsletter Covering September 2018

Newsletter Sep 18

Summary for September 2018

NET News

Several headlines covering the past month:

1. The annual NANETS symposium kicks off in a few days. I’m hoping to bring you news from the event (remotely, I won’t be there) and perhaps a summary in next month’s newsletter.

2. The World Health Organisation (WHO) has a proposal on their desk to harmonise the grading structure for all types of Neuroendocrine Neoplasms (NEN). I’ve actually been ahead of the game for over a year since I found out this was coming and it’s reflected in my 18 month old post on Staging and Grading. Be careful where you look as many are still behind the curve on this issue. Their proposals are interesting as they are recommending the final removal of the last vestiges of the word ‘Carcinoid‘, something I’ve been pushing for in the community for some time. I’ll be constructing a new article confirming some of the detail in due course. Watch this space.

3. This very old news from 2007 has resurfaced – an autopsy on former US President Eisenhower confirmed he had a Pheochromocytoma after suffering from heart issues for some time prior to his death. Nonetheless, good publicity for Neuroendocrine Cancer. Read my Pheochromocytoma article here.

Personal NET News

My NET. I still await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. Fortunately the issues are not classed as urgent at this stage. I think they are still consulting with London on the feasibility of trying PRRT first. You can read about my Ga68 PET/CT experience here and my fibrosis issues here.

Looking for Advice?

If you are reading this and you are currently undiagnosed but strongly suspect NETs – this article might help.

If you are diagnosed and looking for a NET Specialist – this article will help and it also includes 10 questions to ask.

Blog Site Activity in September

Due to the vagaries of Facebook inner workings, some of these articles created or updated in the last month may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

don't worry it's benign widescreen Don’t worry, it’s benign! An article about the dangers in assuming that all NETs are benign. All NETs have malignant potential.
Diabetes The NET Effect Diabetes – the NET Effect. Latest article in the “NET Effect” series.
Diagnosing the undiagnosed Diagnosing the Undiagnosed. An article designed to give those looking for a diagnosis, some questions to ask with references. Plus other advice
A Neuroendocrine Tumour is NOT Neuroendocrine Cancer is not a type of another Cancer….. PERIOD! A follow on from the Aretha Franklin article to emphasise that Neuroendocrine Cancer is a cancer in its own right.
Newsletter Aug 18 RonnyAllan.NET – Community Newsletter August – in case you missed it.
Your-favourite-articles-1.jpg Your favourite posts. The numbers are so big so the list is now too long – revised list now for anything above 5000 hits. I now have two articles with over 20,000 views.
lets raise our sites Let’s raise our “sites” – twist on the word sights to indicate we need to keep on letting people know that a NET in a particular part of the anatomy should not be called that anatomical cancer. The change in graphic seems to have made this more popular.

There have been many distractions in September 2018, I was very busy with WEGO Health stuff but still managed 25,000 views. Here are the top 10 most read articles which contributed to last month’s figures:

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD! More stats 1,279
Living with Neuroendocrine Cancer – Home Page More stats 1,212
Diagnosing the Undiagnosed More stats 942
Neuroendocrine Cancer – tumour markers and hormone levels More stats 913
Neuroendocrine Cancer – normally slow but always sneaky More stats 785
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist) More stats 760
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption More stats 635
Neuroendocrine Cancer – let’s raise our ‘sites’ More stats 618
Neuroendocrine Cancer – Ronny Allan: Background to my Diagnosis and Treatment More stats 610
Diabetes – The NET Effect More stats 593

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Private Facebook Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc). The second chat will be about “Weight” and you can join the event by selecting ‘Going’ to this event (you will be kept up to date inside this event).
Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 1st October 2018, there were almost 1900 people in the group. I might cap at 2000 to maintain the integrity of the site.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details but I can tell you now I will be speaking at the Eye for Pharma event in London alongside an important Pharma NET contact.
  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation. That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support and it meets with my association criteria.
  • 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/) – They 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.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 220 times on my personal account which led to over 140,000 views of my tweets. I was mentioned 145 times by other tweeters, 1648 people looked at my profile and I gained 74 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 600 other subscribers.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
wego blog 2018 winner
Click the picture to watch the video of the live announcements

Social Media and Stats

Blog Milestone. At the end of last month, I accelerated past 709,000 blog views! Thank you all so much ♥ Keep sharing! On track for one million in the latter half of 2019.

Facebook Milestone. Almost 6800 ‘Likes’ by the end of the end of last month but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 300 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

Thanks for your great support in last month. Onward and upwards!

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

 

Diabetes – The NET Effect


My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET – the outcome of that is still a work in progress. Earlier this year, my thyroid ‘lesion’ on watch and wait was given a ‘damping down’ with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream.

Bubbling behind the scenes and clamoring for attention is the spiking of my blood glucose test results and I was very recently declared ‘at risk’ for diabetes One of my followers entitled a post in my group with “The hits keep coming” in reference to encountering yet another problem in the journey with Neuroendocrine Cancer. I now know how she feels, this issue is a bit of a ‘left fielder’. However, having analysed the situation and spoken to several doctors, I can now put pen to paper.

Neuroendocrine Cancer is not a household name (…… I’m working on that) but diabetes certainly is. The World Health Organisation reports that the number of adults living with diabetes has almost quadrupled since 1980 to 422 million adults. In USA, estimates from CDC stated around 10 million people diagnosed with diabetes with a further 84 million in pre-diabetes state (at risk). In UK around 3.7 million people have diabetes with about 4 times that amount ‘at risk’. It’s a growth industry (…….. but so is NETs – in the last 40 years, the incidence of NETs is rising at a faster rate than diabetes, a disease which some writers have described as an epidemic).

With those numbers, it follows that many NET patients will be diabetic before diagnosis, some will succumb to diabetes whether they have NETs or not, and some may have an increased risk of succumbing due to their treatment. Some may even be pushed into diabetes as a direct result of their NET type or treatment. It’s important to understand diabetes in order to understand why certain types of NET and certain treatments could have an involvement.

The Pancreas

For understanding of this article, it’s worth noting the pancreas has two main functions: an exocrine function that helps in digestion and an endocrine function that regulates blood sugar. I have talked about the exocrine function in relationship to Neuroendocrine Cancer at length – check out this article on Pancreatic Enzyme Replacement Therapy. In this article, I now want to cover the issues with the endocrine function and blood sugar. First a short primer on diabetes – it is necessarily brief for the purposes of this article.

 

Diabetes Primer

TypeS OF DIABETES

Type 1 and Type 2 Diabetes are fairly well-known. There’s actually more than two types, but these are the most common. Type 2 is the most prevalent with around 90% of diabetes cases. When you’ve got Type 1 diabetes, you can’t make any insulin at all. If you’ve got Type 2 diabetes, the insulin you make either can’t work effectively, or you can’t produce enough of it. Additional types may come up in the subsequent discussion.

What is the problem?

What all types of diabetes have in common is that they cause people to have too much glucose (sugar) in their blood. But we all need some glucose. It’s what gives us our energy. We get glucose when our bodies break down the carbohydrates that we eat or drink. And that glucose is released into our blood. We also need a hormone called insulin. It’s made by our pancreas, and it’s insulin that allows the glucose in our blood to enter our cells and fuel our bodies.

If you don’t have diabetes, your pancreas senses when glucose has entered your bloodstream and releases the right amount of insulin, so the glucose can get into your cells. But if you have diabetes, this system doesn’t work properly. Diabetes is associated by being overweight but there isn’t a 100% correlation with that. However, when an individual becomes overweight, there is an increase in free fatty acids in the blood stream which may contribute to reduced insulin sensitivity in the tissues, leading to increased glucose levels in blood.

Symptoms and diagnosis of Diabetes

Different people develop different symptoms. In diabetes, because glucose can’t get into your cells, it begins to build up in your blood. And too much glucose in your blood causes a lot of different problems. To begin with it leads to diabetes symptoms, like having to wee a lot (particularly at night), being incredibly thirsty, and feeling very tired. You may also lose weight, get infections like thrush or suffer from blurred vision and slow healing wounds.

I see these symptoms mentioned very frequently and normally people are trying to associate them with NETs and/or the treatment for NETs.

Diabetes diagnosis is normally triggered diagnosed based on blood tests such as fasting Blood Glucose (snapshot) and/or Glycated Hemoglobin (A1C) or HbA1C.

Complications

Over a long period of time, high glucose levels in your blood can seriously damage your heart, your eyes, your feet and your kidneys. These are known as the complications of diabetes.

But with the right treatment and care, people can live a healthy life. And there’s much less risk that someone will experience these complications.

What are the direct connections with Diabetes and NETs?

It’s not surprising that diabetes is mostly associated with Neuroendocrine Tumors of the Pancreas but there are other areas of risk for other types of NETs including to those who are existing diabetics – see below.

Surgery

The main types of surgery for Neuroendocrine Tumors of the Pancreas are Distal Pancreatectomy (tail), Sub-total pancreatectomy (central/tail), Classic Whipple (pancreaticoduodenectomy – head and/or neck of pancreas), Total pancreatectomy (remove the entire pancreas) or an Enucleation (scooping out the tumour with having to remove too much surrounding tissue). From the PERT article link above (exocrine function), you can see why some people need this treatment to offset issues of reduced production of pancreatic enzymes. The same issue can develop with a reduced endocrine function leading to the development of diabetes.

NET Syndromes

The different types of functional pancreatic NETs often called syndromes in their own right due to their secretory role. One might think that Insulinomas are connected to diabetes issues but this hormonal syndrome is actually associated with low blood sugar (hypoglycemia), although low blood sugar can turn out to be a complication of diabetes treatment.

A NET syndrome known as Glucagonoma (a type of functional pancreatic NET) is associated with high blood glucose levels. About 5-10% of pancreatic neuroendocrine tumors are Glucagonomas, tumors that produce an inappropriate abundance of the hormone glucagon. Glucagon balances the effects of insulin by regulating the amount of sugar in your blood. If you have too much glucagon, your cells don’t store sugar and instead sugar stays in your bloodstream. Glucagonoma therefore leads to diabetes-like symptoms (amongst other symptoms). In fact Glucagonoma is sometimes called the 4D syndrome – consists of diabetes, dermatitis, deep venous thrombosis (DVT), and depression.

Another functional pancreatic NET known as Somatostatinoma is prone to developing insulin resistance. Somatostatinomas produce excessive amounts of somatostatin which interferes with the insulin/glucagon function and could therefore lead to diabetes.

Diabetes caused by cancer or cancer treatment

Worth noting that this type of diabetes is sometimes known as ‘Pancreatogenic diabetes’ and this is actually classified by the American Diabetes Association and by the World Health Organization as type 3c diabetes mellitus (T3cDM) and refers to diabetes due to impairment in pancreatic endocrine function due to acute cancer and cancer treatment (and several other conditions). The texts tend to point to cancers (and other conditions) of the pancreas rather than system wide. Prevalence data on T3cDM are scarce because of insufficient research in this area and challenges with accurate diabetes classification in clinical practice. (Authors note: Slightly confusing as many text say that type 3 diabetes is proposed for insulin resistance in the brain (diabetes associated with Alzheimer’s disease).  There’s another term for a complete removal of the entire pancreas – Pancreoprivic Diabetes

Other treatment risks

Somatostatin Analogues (e.g. Octreotide and Lanreotide) are common drugs used to control NET Syndromes and are also said to have an anti-tumor effect. They are known to inhibit several hormones including glucagon and insulin and consequently may interfere with blood glucose levels. The leaflets for both drugs clearly state this side effect with a warning that diabetics who have been prescribed the drug, should inform their doctors so that dosages can be adjusted if necessary. The side effects lists also indicates high and low blood glucose symptoms indicating it can cause both low and high blood glucose (hypoglycemia and hyperglycemia). For those who are pre-diabetic or close to pre-diabetic status, there is a possibility that the drug may push blood tests into diabetic ranges.
Afinitor (Everolimus). The patient information for Afinitor (Everolimus) clearly states “Increased blood sugar and fat (cholesterol and triglycerides) levels in blood: Your health care provider should do blood tests to check your fasting blood sugar, cholesterol and triglyceride levels in the blood before you start treatment with AFINITOR and during treatment with AFINITOR”
Sutent (Sunitinib). The patient information for Sutent (Sinitinib) clearly states that low blood sugar (hypoglycemia) is a potential side effect. It also advises that low blood sugar with SUTENT may be worse in patients who have diabetes and take anti-diabetic medicines. Your healthcare provider should check your blood sugar levels regularly during treatment with SUTENT and may need to adjust the dose of your anti-diabetic medicines.

In rare cases, certain NETs may produce too much Adrenocorticotropic hormone (ACTH), a substance that causes the adrenal glands to make too much cortisol and other hormones. This is often associated with Cushing’s syndrome. Cortisol increases our blood pressure and blood glucose levels with can lead to diabetes as a result of untreated Cushing’s syndrome.

Summary

I think it’s sensible for all NET patients, particularly those with involvement as per above and who are showing the signs of hypoglycemia and hyperglycemia, to be checked regularly for blood glucose and if necessary HbA1c. Many patient information leaflets for the common NET treatments also indicate this is necessary. Always tell your prescribing doctors if you are a diabetic or about any history of low or high blood glucose before treatment for NETs.

My brush with Diabetes (as at Jan 2019)

My blood glucose levels started to climb slightly in 2016 but HbA1c remained normal. However, an HbA1c test in early 2018 put me into pre-diabetic range (44 mmoL/moL). I explained some of the above article to my GP who is corresponding with a diabetes expert at secondary care – the expert suggested that I need to be monitored carefully as weight loss is not necessarily the best response. I have kept my NET team up to date.

At the time of updating, two separate and sequential HbA1c tests (3 month interval) came back normal at 36 mmoL/moL.  I’m pragmatic enough to know that I do not need to lose weight as one of the aims of reducing my blood glucose and HbA1c levels (something emphasised by the above mentioned diabetes specialist).

I even got on my bike to do a little bit more exercise just in case!

At this point, I cannot yet say if this is the beginning of progressive Type II diabetes or if my medication is causing these spikes in my blood glucose and HbA1c. Judging by 2 x normal HbA1c, looks like the somatostatin analogue (Lanreotide in my case) may caused a spike to a pre-diabetes score.  I will keep you posted.

Summary – if you are noticing these symptoms, get your blood sugar checked (with acknowledgement to Dr Pantalone from Cleveland Clinic)

1. You’re making more trips to the bathroom

Having to go to the bathroom more than normal, particularly at night, is a sign that your blood sugar might be out of whack.

Dr. Pantalone says one of his patients came in for a diagnosis after a family member noticed that he was using the bathroom during each commercial break when they watched TV.

2. You’re getting frequent urinary or yeast infections

When your blood sugar is high and your kidneys can’t filter it well enough, sugar ends up in the urine. More sugar in a warm, moist environment can cause urinary tract and yeast infections, especially in women.

3. You’re losing weight without trying

If you have diabetes, your body isn’t able to use glucose (sugar) as effectively for its energy. Instead, your body will start burning fat stores, and you may experience unexpected weight loss.

4. Your vision is getting worse

High sugar levels can distort the lenses in your eyes, worsening your vision. Changes in your eyeglass prescription or vision are sometimes a sign of diabetes.

5. You’re feeling fatigued or exhausted

Several underlying causes of fatigue may relate to diabetes/high sugar levels, including dehydration (from frequent urination, which can disrupt sleep) and kidney damage.

This feeling of exhaustion is often persistent and can interfere with your daily activities, says Dr Pantalone.

6. You’re noticing skin discoloration

Something that Dr. Pantalone often sees in patients before a diabetes diagnosis is dark skin in the neck folds and over the knuckles. Insulin resistance can cause this condition, known as acanthosis nigricans.

 

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

wego-blog-2018-winner

RonnyAllan.NET – Community Newsletter Covering August 2018

RIP Aretha Franklin – Neuroendocrine Cancer

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 certificate – I believe this is the most concrete evidence of her type of cancer. Click here for Aretha.

2. PRRT in UK took a step forward when NICE finally approved the drug (Lu-177) for use in England and there is mention of some direction for Wales in the document (I’m trying to find out what it means for Wales). Scotland had already been approved last month and I assume Northern Ireland will continue to access elsewhere in UK via an NHS inter-region funds transfer until facilities are in place. You can read the NICE approval document which also has a very interesting ‘Implementation’ section. Click here to read.

3, The World Health Organisation (WHO) has a proposal on their desk to harmonise the grading structure for all types of Neuroendocrine Neoplasms (NEN). I’ve actually been ahead of the game for over a year since I found out this was coming and it’s reflected in my 18 month old post on Staging and Grading. However, their proposals are interesting as they are recommending the final removal of the last vestiges of the word ‘Carcinoid‘, something I’ve been pushing for in the community for some time. I’ll be constructing a new article confirming some of the detail in due course.

Personal News

My NET. I await the output from a meeting with my Oncologist and Surgeon to address the new issues identified my routine surveillance scan and a subsequent Ga68 PET/CT. The holiday season will soon be over, fortunately the issues are not classed as urgent at this stage. You can read about my Ga68 PET/CT experience here and my fibrosis issues here.

WEGO Health Awards. I also await the results of the WEGO Health Award Finals. Many thanks for all your votes which I noticed were over 1000 by the time the voting ended. The finalists will be announced on 4th September. Check out my WEGO Health profile here.

Blog Site Activity in August

Due to the vagaries of Facebook inner workings, some of these articles created or updated in August 2018 may not have even shown on your timeline. So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

I wish I had another cancer – not about me but about ‘cancer Olympics’ we see online – there’s a twist to this one though.
RIP Queen of Soul Aretha Franklin – Neuroendocrine Cancer. Very said news but we are currently battling to ensure awareness comes to Neuroendocrine Cancer.
J Nucl Med 2017 Mar 58(3) 451-7, FIGURE 2 (1) 64Cu-DOTATATE – a potential addition to the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer? news from the Nuclear PET scan industry of interest to NETs plus why there is a shortage of Ga68 PET radionuclide in USA.
prrt update PRRT Update – patients please read and advise on new locations. Contains the patient provided update on new locations for insurance funded PRRT in USA. PLUS news of PRRT approval in the United Kingdom
Newsletter July 18 RonnyAllan.NET – Community Newsletter July 2018 – in case you missed it.
Your-favourite-articles-1.jpg Your favourite posts. The numbers are so big so the list is now too long – revised list now for anything above 5000 hits
Upgraded from 7 to 8 tips for conquering fear
My most viewed article and updated now to include Aretha Franklin – The Human Anatomy of Neuroendocrine Cancer

There have been many distractions in August 2018 but following the Aretha headline, I broke all records for hightest numbers of viewing in one day, in one week and in one month. I almost made 40,000 views. Here are the top 10 most read articles which contributed to August’s figures:

RIP Queen of Soul Aretha Franklin – Neuroendocrine Cancer More stats 7,608
The Human Anatomy of Neuroendocrine Cancer More stats 3,985
Home page / Archives More stats 1,831
Living with Neuroendocrine Cancer – Home Page More stats 1,232
I wish I had another cancer More stats 1,185
Chemotherapy for Neuroendocrine Cancer More stats 807
Neuroendocrine Cancer – Ronny Allan: Background to my Diagnosis and Treatment More stats 778
Ever wondered what caused your NET? More stats 765
Neuroendocrine Cancer – normally slow but always sneaky More stats 756
Neuroendocrine Tumours – Let’s give Carcinoid Crisis a red card! More stats 639

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients. Thank you all so much for the support in helping me do this.

  • Please join my 2018 awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information. I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff. I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Group

As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!). This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues. The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).

Join the chat group by clicking here (please answer the simple questions so you can be processed quicker). As at 31st August 2018, there were almost 1650 people in the group. I might cap at 2000 to maintain the integrity of the site.

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of. I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details but I can tell you now I will be speaking at the Eye for Pharma event in London alongside an important Pharma NET contact.
  • In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation. That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • 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/) – They 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.
  • Some of you will remember the invite to Berlin for a ‘Patients included’ event, This was not a NET Cancer event but I was invited due to my wider healthcare advocate work. That was a tough gig but great experience. There’s a summary file here and I have been invited back next year and my involvement is still being worked out.

Article features

  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 211 times on my personal account which led to over 138,000 views of my tweets. I was mentioned 109 times by other tweeters, 2012 people looked at my profile and I gained 30 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. WEGO Health Awards 2018 – I also await the results of the WEGO Health Award Finals. Many thanks for all your votes which I noticed were over 1000 by the time the voting ended. The finalists will be announced on 4th September. Check out my WEGO Health profile here.

Social Media and Stats

Blog Milestone. At the end of August, I accelerated past 683,000 blog views! Thank you all so much ♥ Keep sharing! On track for one million in the latter half of 2019.

Facebook Milestone. Surpassed 6641 followers by the end of August but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 250 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go! I really enjoy these pictures, I hope you do too. You can follow me here: Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others. However, I cannot do this without you guys liking, commenting and sharing! The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble. The sharing gives me a bigger platform. A bigger platform generates more awareness.

Thanks for your great support in AUGUST. Onwards and upwards!

Thanks for reading

Please Share this post

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

RonnyAllan.NET – Community Newsletter JULY 2018

Newsletter July 18

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 are still here too – thanks for the wonderful comments to this Facebook post – click here.

NET News

PRRT in UK took a step forward when both the Scottish Medicines Consortium and NICE approved the drug (Lu-177) for use in Scotland and England respectively.  Wales and Northern Ireland will continue to access elsewhere in UK via an NHS inter-region funds transfer until facilities are in place.  That said, currently there are no PRRT facilities in Scotland (that I know of) and very few in England.  Watch this space.

Blog Site Activity in July

Due to the vagaries of Facebook inner workings, some of these articles created or updated in July 2018 may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

 PET-CT-ScannerNeuroendocrine Cancer: Ga68 PET Scan – a game changer?

G68 PET Scans – a game changer? 

My latest article following the results of my first Ga68 PET scan. I’m no longer a ‘boring’ stable patient.
  Neuroendocrine Cancer – Mesenteric and Retroperitoneal Fibrosis – an unsolved mystery?

a long-awaited article about something which has plagued me since diagnosis but has now had an impact on my potential treatment strategy.
  “What are you doing this afternoon”

Words which triggered my diagnosis.  I got a scan.
PRRT Update – patients please read and advise on new locations.  Contains the patient provided update on new locations for insurance funded PRRT in USA.

Lanreotide – 100 shots!

My 100th Lanreotide birthday!

Will you vote for Ronny Allan?

I need your votes to progress into the finals of the WEGO Health Awards.  Please see how you can help inside this article.
Neuroendocrine Cancer – tumour markers and hormone levels – did I miss any?
   177Lu-DOTA-EB-TATE – Long-lasting radionuclide therapy for advanced neuroendocrine tumors proves effective –

news of a new PRRT trial
RonnyAllan.NET – Community Newsletter June 2018 – in case you missed it.

There have been many distractions in July 2018 but a respectable ~28,000 views.  Here are the top 10 most read articles which contributed to July’s figures:

Neuroendocrine Cancer – normally slow but always sneaky More stats 2,730
Home page / Archives More stats 1,977
Neuroendocrine Cancer: Ga68 PET Scan – a game changer? More stats 1,506
Living with Neuroendocrine Cancer – Home Page More stats 1,047
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist) More stats 943
“What are you doing this afternoon” More stats 678
Neuroendocrine Cancer – Ronny Allan: Background to my Diagnosis and Treatment More stats 627
RonnyAllan.NET – Community Newsletter JUNE 2018 More stats 620
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 619
177Lu-DOTA-EB-TATE – Long-lasting radionuclide therapy for advanced neuroendocrine tumors proves effective More stats 606

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients.  Thank you all so much for the support in helping me do this.

  • Please join my 2018 awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff.  I have so many other sites you can contact me on – all inside the newsletter. The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Ronny Allan’s Group


As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!).  This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues.  The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).

Join the chat group by clicking here(please answer the simple questions so you can be processed quicker). As at 30 July 2018, there were almost 1400 people in the group. I might cap at 2000 to maintain the integrity of the site. 

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of.  I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details.
  • In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation.  That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • 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/) – They 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.
  • Some of you will remember the invite to Berlin for a ‘Patients included’ event,  This was not a NET Cancer event but I was invited due to my wider healthcare advocate work.  That was a tough gig but great experience.  There’s a summary file here and I have been invited back next year and my involvement is still being worked out.

Article features

  • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice.  I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 179 times on my personal account which led to over 123,000 views.  I was mentioned 101 times by other tweeters, 1909 people looked at my profile and I gained 39 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel).  There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!  They recently listed me as one of the top 5 bloggers to watch in 2018.  This is great awareness and good feedback for my own efforts.  Read more here.  Also note the 2018 voting is now open.  If you would like to vote for one of my five nominations, please see here for details – click here.

Social Media and Stats

Blog Milestone.  At the end of July, I accelerated past 640,000 blog views! Thank you all so much ♥ Keep sharing!  On track for one million in the latter half of 2019.

Facebook Milestone.  Surpassed 6430 followers by the end of July but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback  sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 250 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  I really enjoy these pictures, I hope you do too. You can follow me here:  Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others.  However, I cannot do this without you guys liking, commenting and sharing!  The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble.  The sharing gives me a bigger platform.  A bigger platform generates more awareness.

Thanks for your great support in JULY.  Onwards and upwards!

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

 

Neuroendocrine Cancer: Ga68 PET Scan – a game changer?

When I was offered my very first Ga68 PET/CT at a 6 monthly surveillance meeting in May 2018, I was both excited and apprehensive. Let me explain below why I had a mix of emotions.

I was diagnosed in 2010 with metastatic NETs clearly showing on CT scan, the staging was confirmed via an Octreotide Scan which in addition pointed out two further deposits above the diaphragm (one of which has since been dealt with). In addition to routine surveillance via CT scan, I had two further Octreotide Scans in 2011 and 2013 following 3 surgeries, these confirmed the surveillance CT findings of remnant disease. The third scan in 2013 highlighted an additional lesion in my thyroid (still under a watch and wait regime, biopsy inconclusive but read on….).

To date, my 6 monthly CT scans seem to have been adequate surveillance cover and all my tumour and hormone markers remain normal. I’m reasonably fit and well for a 62-year-old.

Then I ventured into the unknown

this is not actually my scan!

I wrote a comprehensive post about the Ga68 PET entitled “…. Into the unknown” – so named because that is how I felt at the time. It’s well-known that the Ga68 is a far superior nuclear scan to the elderly Octreotide type, showing much greater detail with the advantage of providing better predictions of PRRT success if required downstream. It has been a game changer for many and if you look below and inside my article, you will see statistics indicating just how it can ‘change the game’ in somatostatin receptor positive Neuroendocrine Cancer diagnostics and treatment.

The excitement of the Ga68 PET

I was going to get the latest ‘tech’ and thought it could be useful confirmation of what I already knew. I also felt lucky to get one, they are limited in UK and there has to be a clinical need to get access. I was excited because it might just rubber stamp the stability I’ve enjoyed for the past 5 or so years since my last surgery in 2012.

The apprehension of the Ga68 PET

I also felt apprehensive because of the ‘unknown’ factor with cancer, i.e. what is there lurking in my body that no-one knows about, and which might never harm me but this scan will light it up demanding attention. I was also apprehensive in case this more detailed scan found something potentially dangerous. As we know, NETs are mostly slow-growing but always sneaky. Of course, any new tumours found may not actually be new, they were just not seen until the Ga68 PET was able to uncover them.  How annoying!

Is the Ga68 PET Scan a game changer?

To confirm the advantages of SSTR PET over Octreotide scans, a study comprising 1,561 patients reported a change in tumour management occurred in over a third of patients after SSTR PET/CT even when performed after an Octreotide scan.

  • Overall, change in management occurred in 44% (range, 16%-71%) of NET patients after SSTR PET/CT.
  • In 4 of 14 studies, SSTR PET/CT was performed after an 111In-Octreotide scan. In this subgroup, additional information by SSTR PET/CT led to a change in management in 39% (range, 16%-71%) of patients.
  • Seven of 14 studies differentiated between inter- and intramodality changes, with most changes being intermodality (77%); intramodality, (23%). (note: intermodality means changes within the same treatment, intramodality means change to another treatment).

In an older study, this slide from a NET Research Foundation conference shows some more interesting statistics:

wp-image-991783422jpg
This slide from a recent NET Research Foundation conference confirms the power of more detailed scanning

Was Ga68 PET a game changer for me?

Yes, I believe so.  I’m now in the ‘bone met club’ and although that single metastasis has probably been there for some time, it’s not a ‘label‘ I was keen to add to my portfolio. If I was to be 100% honest, I’m not totally convinced it’s a metastasis. The scan has brought more light onto my thyroid issue.  In fact it indicates even more potential issues above the diaphragm including what looks like a new sighting around my left pectoral lymph nodes.  The scan also lghts up a known issue in the left clavicle lymph nodes, first pointed out via Octreotide scan in 2010 and biopsy negative.

In addition to a nuclear scan update (routine surveillance), it also formed part of an investigation into progression of my retroperitoneal fibrosis (initially diagnosed 2010 but potential growth spotted on recent surveillance CT).  The Ga68 PET doesn’t make fibrosis light up (it’s not cancerous) but there are some hotspots in the area of the aorta close to the fibrosis, a potential source if the cause.  Surgery is on hold for now as my kidney function is fine following a renal MAG3 scan which reported no blockages. 

It would appear I’m no longer a boring stable patient

The Ga68 PET Scan confirmed:

Bone Metastases. Report indicates “intense focal uptake“. It always amazes me that people can be thankful for having an extra tumour.  I’m thankful I only have a single bone metastasis (right rib number 11). I had read so many stories of those who got their first Ga68 PET and came back with multiple bone metastases. I’ll accept one and add to my NET CV. I have no symptoms of this bone metastasis and it will now be monitored going forward. I’m annoyed that I don’t know how long it’s been there though!

Confirmation and better understanding of the following:

  1. Thyroid lesion There is some uptake showing. A 2014 Biopsy of this lesion was inconclusive and actual 2018 Ga68 PET report infers physiological uptake. I’m already diagnosed hypothyroidism, possibly connected.  (Edit – on ultrasound in Jan 2019, looks slightly smaller than previous check).
  2. Left Supraclavicular Fossa (SCF) Nodes lighting up “intense uptake“.  I’ve had an exploratory biopsy of the SCF nodes, 5 nodes removed negative. Nothing is ‘pathologically enlarged’ in this area. Monitored every 6 months on CT, annually on ultrasound.  I had 9 nodes removed from the left axillary in 2012, 5 tested positive for NETs and this area did not light up. This whole area on the left above the diaphragm continues to be controversial. My surgeon once said I had an unusual disposition of tumours.  (Edit: Nothing sinister or worryingly enlarged showing on Jan 2019 ultrasound – measuring 6mm).
  3. Report also highlights left subpectoral lymph nodes which is new.  The subpectoral area is very interesting as from my quick research, they are closer to the left axillary (armpit) nodes than they are to the SCF nodes. I’m hoping to get an ultrasound of these in January at my annual thyroid clinic (Edit: nothing sinister showing on ultrasound in Jan 2019).
  4. My known liver metastases lit up (remnant from liver surgery 2011) – not marked as intense though. The figure of 3 seems to figure highly throughout my surveillance scans although the PET report said “multiple” and predominately right-sided which fits.
  5. Retroperitoneal area. This has been a problem area for me since diagnosis and some lymph nodes are identified (intense word not used). This area has been highlighted on my 3 octreotide scans to date and was first highlighted in my diagnosis trigger scan due to fibrosis (desmoplasia) which was surrounding the aorta and inferior venous cava, some pretty important blood vessels. I wrote an article on the issue very recently – you can read by clicking here. So this scan confirms there are potentially active lymph nodes in this area, perhaps contributing to further growth of the fibrosis threatening important vessels – read below.

Retroperitoneal Fibrosis (Desmoplasia)

I have learned so much about desmoplasia since this issue arose that I now fully understand why I had to have radical surgery back in 2010 to try to remove as much of the fibrosis as possible from the aortic area. You can read more about this in my article.  Desmoplasia via fibrosis is still very much of an unknown and mystery condition in NETs.

I now know that my fibrosis is classed as clinically significant and according to the Uppsala study of over 800 patients inside my article, I’m in 5% of those affected in this way (2% if you calculate it using just the retroperitoneal area).

It appears this problem has come back with new fibrosis or growth of existing fibrosis threatening to impinge on blood vessels related to the kidneys and also my ureters (kidney to bladder urine flow). The Ga68 PET doesn’t make fibrosis light up (it’s not cancerous) but there are some hotspots in the area of the aorta close to the fibrosis.

I didn’t expect this particular problem to return – it was a bit of a shock. My hormone markers have been normal since 2011 and this just emphasises the importance of scans in surveillance. 

Conventional Imaging is still important though

There’s still quite a lot of hype surrounding the Ga68 PET scan and I get this.  However, it does not replace conventional imaging (CI) such as CT and MRI scans which still have their place in routine surveillance and also in diagnostics where they are normally at least the trigger for ‘something is wrong’. For the vast majority, a CT/MRI scan will find tumours and be able to measure reductions and progress in regular surveillance regimes. In fact, the retroperitoneal fibrosis has appeared on every CT scan since diagnosis but the changes were highlighted on my most recent standalone CT and it triggered the Ga68 PET (although my new Oncologist did say I was due a revised nuclear scan).  It’s not a ‘functional’ issue (although it is caused by functional tumours). In fact the fibrosis is not mentioned on the Ga68 PET because it is not lighting up – but the lymph nodes surrounding it are mentioned and they are under suspicious as being active.

Appropriate Use Criteria for Somatostatin Receptor PET Imaging in Neuroendocrine Tumors

There are actually recommended usages for the Ga68 PET scan here.  For example, it is not recommended for routine surveillance in place of CI.

Scans – ‘horses for courses’

Read a summary of all conventional scans and nuclear scans by clicking here.

Next Steps

I had a meeting with my Oncologist and Surgeon and a surgical plan is possible in the event of a problem. My surgeon explained it all in his wonderfully articulate and brilliant surgical mind. Fortunately it’s not really urgent but pre-emptive treatment may be required at some point as the consequences of kidney/bladder function are quite severe. Following some further checks, the anticipated surgery is on hold for now as my kidney function is fine following a renal MAG3 scan which reported no blockages.  I continue to have monthly renal blood tests and it was hinted another renal MAG3 could be done at the end of the year.

Summary

My game has changed, that’s for sure. I’m now entering a new phase and I’m waiting on details of my revised surveillance regime. However, at least my medical team and I now know what WE are dealing with and the risks vs benefits are currently being assessed. I’m heavily involved in that.

If you can see it, you can detect it. If you can detect it, you can monitor or treat it.

 

RonnyAllan.NET – Community Newsletter JUNE 2018

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 this is unconnected to my bad chest infection).   Many thanks to all the messages received both public and privately, I’m most grateful for the tonic.

Better News

  1. External Recognition.  I have been nominated for 5 awards, one or two with multiple nominators.  Thanks so much to the named and anonymous nominators – read more here (the 5th nomination is being processed by WEGO so might not be showing yet).  If you would like to nominate me for further awards (twitter, etc), see here how to do this. I’m also absolutely thrilled to be in the Top 5 patient leader blogs to watch in 2018 as listed by WEGO Health. I told you I would take Neuroendocrine Cancer awareness to new audiences and I remain focused on that mission. According to WEGO Health, my blog is armed with facts, personal experience, and compassion. I never have time to assess what I’m doing so it’s useful feedback.
  2. Blog Statistics. Despite a lack of new posts in June, I still managed to accumulate over 25,000 views on my blog site.  In summary, my blog views have accelerated in the past 3 months. Many thanks   This is recognition of organic growth caused by new activities, new contacts, wider use of social media outlets and an increased demand for the type of material I produce. 

Blog Site Activity in June

Due to the vagaries of Facebook inner workings, some of these articles created or updated in Jun 2018 may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here.

 PET-CT-Scanner

Gallium PET Scans – Into the Unknown

My latest article ready for my appointment on 11 July 2018
  RonnyAllan.NET – Community Newsletter May 2018 – in case you missed it.
 prrt update PRRT Update – patients please read and advise on new locations.  Contains the patient provided update on new locations for insurance funded PRRT in USA.
Carcinoid Vs Neuroendocrine.  An important topic and failure to update is preventing us from improving awareness and understanding of NETs
Neuroendocrine Cancer – tumour markers and hormone levels – did I miss any?
   Endoscopy for NETs – taking the camera to the tumour –  minor update
Namaste Irrfan Khan –  Irrfan Khan – well known Indian Actor (Slumdog Millionaire, Life of Pi, Jurassic Park, etc) announced he has a High Grade NET.

Due to illness for most of the month, Jun 2018 views are down on last month but still managed over 25,000 views.  Here are the top 10 most read articles which contributed to Jun’s figures:

Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 1,106
Living with Neuroendocrine Cancer – Home Page More stats 941
Gallium 68 PET Scans – Into the Unknown More stats 834
Neuroendocrine Cancer – normally slow but always sneaky More stats 816
Neuroendocrine Cancer – Incurable vs. Terminal More stats 786
RonnyAllan.NET – Community Newsletter May 2018 More stats 716
Namaste Irrfan Khan More stats 714
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 690
Neuroendocrine Cancer – tumour markers and hormone levels More stats 679
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 668

Other Activity

I’m constantly looking for opportunities to spread awareness and advance the cause of Neuroendocrine Cancer patients.  Thank you all so much for the support in helping me do this.

  • Please join my 2018 awareness campaign event here (select ‘Going’)

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff.  I have so many other sites you can contact me on – all inside the newsletter.
  • The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
  • As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!).  This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues.  The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).

    Join the chat group by clicking here (please answer the simple questions so I can process quicker). As at 2 July 2018, there were almost 1237 people in the group. I might cap at 2000. 

New Audiences for NET Cancer

I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. Sharing memes and animal pictures between patients is not my scene – I want to extend awareness much wider than that to ensure we move away from being a niche condition that no-one has heard of.  I’m doing this all the time, although it may not always be apparent.

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details.
  • In July, I will continue a dialogue in a patient app development coordinated by NET Patient Foundation.  I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • 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/) – They 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

Article features

  • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice.  I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 124 times on my personal account which led to over 88,000 views.  I was mentioned 80 times by other tweeters, 1689 people looked at my profile and I gained 39 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel).  There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!  They recently listed me as one of the top 5 bloggers to watch in 2018.  This is great awareness and good feedback for my own efforts.  Read more here.  Also note the 2018 awards are now open.  If you would like to nominate me for an award, ask me how.

Social Media and Stats

Blog Milestone.  At the end of June, I accelerated past 618,000 blog views! Thank you all so much ♥ Keep sharing!  On track for one million in the latter half of 2019.

Facebook Milestone.  Surpassed 6300 followers by the end of June but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

Also check out my sister Facebook sites here (go to these pages and click on ‘Like’)

These are fallback  sites to counter the Facebook algorithm whereby you may not see all my posts on the main site (click on the links to see the pages)

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 250 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  I really enjoy these pictures, I hope you do too. You can follow me here:  Click here to go to my Instagram page

Community Statistics (the measurement of my efforts on your behalf)

Figures

Summary

An amazing amount of awareness and hopefully, support for others.  However, I cannot do this without you guys liking, commenting and sharing!  The likes give me motivation, the comments and private messages give me inspiration or at least a chance to explain further – and they also keep me humble.  The sharing gives me a bigger platform.  A bigger platform generates more awareness.

Thanks for your great support in JUNE.  Onwards and upwards!

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

RonnyAllan.NET – Community Newsletter May 2018

 

Newsletter May 18

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.  My holiday was also very enjoyable despite the travelling to and from the area.  The weather in UK has been mostly hot and muggy!

However, the day following my return from holiday, I sensed my chest tightening and this led to general fatigue, malaise, wheezing. coughing and (unusual for me) nausea and a single bout of sickness. Getting out of bed on Friday 1st June proved difficult (thus why this newsletter was not complete and not sent out).  One thing led to another and on Monday 4th June, I finally sought medical help (first lesson, that took too long to instigate).  Don’t let your poker face take over.  Armed with antibiotics and steroids, I set about repairing myself.  For good measure I also got a chest x-ray and some blood tests (tbc).  Just as well I was still strong enough to go to London for my very first Ga68 PET scan on Tuesday although my wife had to come with me given my fragile state.  I accept I took a risk here.  I’m still recovering as this newsletter goes out.

Better News

  1. External Recognition. I’m absolutely thrilled to be in the Top 5 patient leader blogs to watch in 2018 as listed by WEGO Health. I told you I would take Neuroendocrine Cancer awareness to new audiences and I remain focused on that mission. According to WEGO Health, my blog is armed with facts, personal experience, and compassion. I never have time to assess what I’m doing so it’s useful feedback. And thanks also to NET Patient ‘Michael’ for his comment on last year’s nomination which has been used here.  Read more here.
  2. Blog Statistics. Despite a lack of new posts due to the above mentioned external activities, May 2018 was still a record-breaking month (after April’s new high) with more than 30,000 views for the third time in three months. In summary, my blog views have accelerated in the past 3 months. Many thanks   This is recognition of organic growth caused by new activities, new contacts, wider use of social media outlets and an increased demand for the type of material I produce. 
  3. WEGO Health Awards.  I received my first nomination for the 2018 awards – a return to ‘Best in Show: Community’, an award I won in 2016 – very exciting.  If you would like to nominate me for further awards (blog, Facebook, twitter, etc), see here how to do this.

Blog Site Activity in May

Due to the vagaries of Facebook inner workings, some of these articles created or updated in May 2018 may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links, includes updated blogs. You can actually sign up to receive my blog articles direct to your inbox when published – subscribe here. May 2018 was a record-breaking month with the biggest number of views in one month ever.  ​

 PET-CT-Scanner

Gallium PET Scans – Into the Unknown

My latest article following an appointment schedule for 5 June 2018
 Newsletter Apr 18 RonnyAllan.NET – Community Newsletter April 2018 – in case you missed it.
 prrt update PRRT Update – US patients please read and advise on new locations
 Yao not rare NETs no longer rare – don’t believe the hype – believe the math
 Young-woman-with-computer-worried Patient Forums – Frighteningly good or good at frightening? An honest appreciation of the issues.  Some won’t like my text, if not, just move on to the next story. 
 enterade-bottle-2016  enterade trial for treating diarrhea in NET Patients – updated to include new data.

Despite a lack of posts due to external activities, …. May 2018 is now a record-breaking month (after April and May’s new highs) with more than 35,000 views (another 30k plus figure for the third time in three months).  Here are the top 10 most read articles which contributed to May’s figures:

Neuroendocrine Cancer – normally slow but always sneaky More stats 1,672
Lutetium Lu 177 dotatate (Lutathera®) – PRRT More stats 1,179
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,136
Living with Neuroendocrine Cancer – Home Page More stats 1,114
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 1,024
Gallium PET Scans – Into the Unknown More stats 960
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 823
Don’t believe the hype – Neuroendocrine Cancer Myths debunked More stats 814
Background to my Diagnosis and Treatment More stats 727
Neuroendocrine Tumours – benign vs malignant