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

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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: 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 of 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 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 suspicion of 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 malfunction 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.

 

“What are you doing this afternoon”

video

On 8th July 2010, I was sat in front of a secondary care consultant, his speciality was colorectal. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy.  I changed that plan because this “non-issue” was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour – after all, I wasn’t actually ill!

Rewind two months, I had an incidental set of blood tests ordered by a nurse following a routine visit to my local medical centre (……. “I think I’ve lost a bit of weight“).  My haemoglobin was low (even lower on repeat testing).  The GP compared my results to someone in their eighties with malnutrition. In hindsight, I should have been alarmed by that statement but instead I went on holiday to Barbados.  Apparently low haemoglobin is a sign of iron deficiency anaemia.  I suspected it would pass, either my blood results would revert to normal naturally, or they would after a prescription for some pills. That’s what normally happens, isn’t it?  I was so indifferent to the issue, I even delayed the blood tests by three weeks.

Back to 8th July 2010 ….I hadn’t really given him many clues but within minutes of chatting with the secondary care consultant (who was armed with the results of the negative colonoscopy test), he said “what are you doing this afternoon“.  I had no hesitation in saying “whatever you want me to do“.  I’m still not getting it as I saw this as a chance to get an all clear, get some pills, get back to normal.  To cut a long story short, the results confirmed I had a metastatic cancer.  If you can see it, you can detect it. The scan didn’t confirm which type of cancer so further checks were planned.

Following the scan results, I had a dozen other tests to narrow it down to Neuroendocrine Cancer (eventually confirmed by biopsy).  During these 2 weeks of tests, I finally confessed for the first time that I had been experiencing facial flushing and intermittent diarrhea. In those days, I wasn’t really in tune with my body.

I had been sitting on a beach in Barbados sipping piña coladas with my wife and neither of us had any inkling that I had a serious life threatening illness and that it had been growing inside of me for some years. Slow but sneaky? You betcha. They did some damage too – check out my treatment summary here.

I remain thankful to all those involved in the triggering of my ‘incidental’ diagnosis.  The Nurse who ordered the ‘just to be sure’ blood tests, the GP who immediately referred me to secondary care (increased my chances of being diagnosed with cancer), the secondary care specialist who was instrumental in getting to the bottom of the problem in double-quick time.

My intransigence, denial and withholding vital symptoms from the doctors didn’t really help – there’s a lesson for all there.

You can hear me talk about my diagnosis by clicking 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

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 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 UpdateUS patients please read and advise on new locations
 Yao not rare NETs no longer raredon’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 More stats 696

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 31 May 2018, there were almost 1100 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 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 attended a medical conference in Berlin as a patient advocate and speaker.  This was not a NET conference so is very exciting for me both as a patient activist and speaker.  I contributed to 3 separate activities:
    • Patient Doctor Communications – read more here
    • The Changing Face of Palliative Care – read more here.
    • My uninvited guest: perspective on chronic disease in young and old – read more here
    • I made a lot of new friends who are all now aware of our type of cancer. I’m hoping for further involvement in future events.
  • I presented a patient experience story in May to a newly established NET Dietitians group in UK – coordinated by the wonderful Tara Whyand.  A wonderful initiative to tackle an unmet need for patients in UK.  There’s a lot more to come from this initiative.
  • In May, I continued 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

  • NET Research Foundation featured an article I wrote about the importance of clinical research, in particular how patients find out about clinical trials that might be of interest to them.  Read more here:
  • Facebook has been in the news regarding the security of user’s data.  I am pretty well up to date with security although determined hackers are always a risk.  I take this threat seriously and my personal account is as protected as it can be.  Any signs of suspicious activity on my blog, Facebook pages and group, or indeed any of my social media sites, is dealt with robustly in order to protect you and me.  I managed to get a quote in the WEGO Health article about the issue.  Check it out here.  Please be careful sharing personal data including in Facebook closed groups.
  • 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 73 times on my personal account which led to over 62,000 views.  I was mentioned 91 times by other tweeters, 2046 people looked at my profile and I gained 60 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 May, I accelerated past 590,000 blog views! Thank you all so much Keep sharing!  On track for one million by the end of 2019.

Facebook Milestone.  Surpassed 6200 followers by the end of May 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 May.  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 April 2018

Headlines

1.  Patients Included.  I’m a big believer that patients should be included in all aspects of healthcare and I can very much relate to any initiative that promotes this. I’m therefore pleased to have been listed as a Patients Included accredited site providing further  EXTERNAL awareness opportunities – read about this here

2. I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc, the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – It also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.

3. My blog site is 4 years old.  When I set my blog up on 29 Apr 2014, I never imagined for one second it would be anything other than an obscure and niche site getting a couple of hits per day. I’m therefore really grateful to those who are still supporting me including my most recent followers. It’s your support that inspires me to write the posts and then offer them up as awareness messages or simply words to help patients. Happy 4th birthday to my blog site!

4.  My Facebook site (NET Cancer Blog) tipped over 6000 likes – I’m sensing a slight slow down in Facebook growth against a backdrop of a 20% increase in blog hits – go figure!  Thanks for your support on this page – if you know someone who might like this page, feel free to invite them or share this post. Many thanks

I caught this news in my social media NET

  1. For patients in UK (England in particular), the long wait for routine access to PRRT could hopefully be coming to an end, despite it being approved in Europe (EU countries) since last year.  The NICE meeting was held in April but to date there has been no release of information about what was discussed and what will happen next. There might be ‘commercial’ niceties and attendee confidentially involved and the NICE website simply states that a meeting was held – nothing more.  Read more by clicking here.
  2. The UK is launching a NET dietitian support initiative (DING – Dietitians Interested in NETs Group) and their first meeting will be held next month. The initiative is led by Tara Whyand and supported by the NET Patient Foundation. Access to “NET aware” dietitians is an unmet need in many places and I’m delighted to be attending to provide a patient story to support this excellent initiative. I have mentioned this unmet need many times in many posts and I’d like to thank Tara for moving the issue forward.  Read more here.
  3. Researchers are testing the drug Sapanisertib to see if it can halt the progression of pancreatic NETs (pNETs) which cannot be surgically removed, have not responded to other treatment, and have spread to other parts of the body.  Read more here.

Blog Site Activity  

Due to the vagaries of Facebook inner workings, some of these articles created or updated in Apr 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  April 2018 was a record-breaking month with the biggest number of views in one month ever.  ​

   Sapanisertib – a drug in trials for pancreatic NETs – read more here
   Major restructure and add-on – Neuroendocrine Cancer – Hormones – read more here
  Update – Somatostatin Receptors – read more here
   Update – The Surveillance Merry-go-round – Read more here
  RonnyAllan.NET – Community Newsletter March 2018 – in case you missed it.
  Update to Carcinoid vs Neuroendocrine

Despite a lack of posts due to external activities,  BUT ….April 2018 is now a record-breaking month with more than 30,000 views for the first time.  Here are the top 10 most read articles which contributed to April’s figures:

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 1,693
Living with Neuroendocrine Cancer – Home Page More stats 1,330
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 1,007
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 973
Neuroendocrine Cancer – no treats, just tricks More stats 933
Background to my Diagnosis and Treatment More stats 851
Neuroendocrine Cancer – Hormones More stats 813
Living with Neuroendocrine Cancer – 7 tips for conquering fear More stats 801
Lanreotide vs Octreotide More stats 764
Neuroendocrine Cancer: Somatostatin Receptors More stats 745

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 30 Apr 2018, there were 791 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 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 have been invited to join a medical conference in Berlin as a patient advocate.  This is not a NET conference so is very exciting for me as a patient activist and speaker.  I’ve been asked to contribute to 3 separate activities:
    • Patient Doctor Communications – read more here
    • The Changing Face of Palliative Care – read more here.
    • My uninvited guest: perspective on chronic disease in young and old – read more here
  • I’m getting ready to present a patient experience story in May to a newly established NET Dietitians group in UK – coordinated by the wonderful Tara Whyand.  Very excited about this, a wonderful initiative to tackle an unmet need for patients.
  • In April, I attended a meeting coordinated by NET Patient Foundation about a patient app.  Apparently 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.
  • Facebook has been in the news regarding the security of user’s data.  I am pretty well up to date with security although determined hackers are always a risk.  I take this threat seriously and my personal account is as protected as it can be.  Any signs of suspicious activity on my blog, Facebook pages and group, or indeed any of my social media sites, is dealt with robustly in order to protect you and me.  I managed to get a quote in the WEGO Health article about the issue.  Check it out here.  Please be careful sharing personal data including in Facebook closed groups.
  • In Feb, my blog site was recommended to health professionals by Dr Jane Maher who is the Chief Medical Officer for Macmillan Cancer Support, one of the biggest Cancer Support organisations in the world.  This was out of the blue but gratefully accepted!  Dr Maher continues to cite this site in April for contributing to general cancer awareness and I’m thankful for that.
  • Article features.
    • NET Research Foundation featured an article I wrote about the importance of clinical research, in particular how patients find out about clinical trials that might be of interest to them.  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 113 times on my personal account which led to over 94,000 views.  I was mentioned 91 times by other tweeters, 2208 people looked at my profile and I gained 35 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!

Social Media and Stats

Blog Milestone.  At the end of April, I accelerated past 555,000 blog views! Thank you all so much Keep sharing!  On track for one million by the end of 2019.

Facebook Milestone.  Surpassed 6000 followers by the end of April 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 April.  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 March 2018

Headline for the period of March 2018 is reaching a milestone of half a million blog views.  Yay …… Read more here. Amazing that I clicked over the 500,000 mark in a taxi going from Barcelona airport to my hotel for ENETS 2018 where I’d been sponsored by INCA.  Fortunately I had prepared the post earlier and was able to spread the news in a few clicks.  I picked up some great information at this conference which I’m feeding into my articles so you get the best and latest thinking.  Here’s a couple of pictures of me with famous NET specialists. 

Dr James Yao
Dr Jonathan Strosberg

I caught this news in my social media NET

  1. A website I helped design with a couple of other patients has won an award.  The site, owned by Ipsen (of Lanreotide fame), on the 2018 Eye for Pharma most valuable patient initiative.  Read more here.
  2. For patients in UK (England in particular), the long wait for routine access to PRRT could hopefully be coming to an end, despite it being approved in Europe (EU countries) since last year.  Dates are now in the diary for discussion and subsequent ‘announce by’ dates. Fingers crossed for some news in April or May.  Read more by clicking here.
  3. ITM announced that 11 trial sites are now open for recruitment to an expansion of PRRT using 177Lu-Edotreotide (Solucin®) – COMPETE Trial.  – Read about it by clicking hereI met the trials team in Barcelona on 8 Mar, they are struggling to get sufficient numbers which is a great shame.
  4. A survey by NET Patient Foundation and Royal Free Hospital London suggests there certain side effects of Lanreotide are more prevalent than the trial data.  Read more here.

Blog Site Activity  

Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Mar 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  March 2018 was a record-breaking month with the biggest number of views in one month ever.  ​

   Irrfan Khan, star of Slumdog Millionaire and Life of Pi, is diagnosed with Neuroendocrine Cancer – read more here
My blog breaks through half a million views – read more here
 PERT article updated to include output from Tara Whyand online chat – read more here
   A patient website I helped design has won a major pharma award. Read more here
  RonnyAllan.NET – Community Newsletter February 2018 – in case you missed it.
  Major restructure and update to Carcinoid vs Neuroendocrine

 

Despite a lack of posts due to external activities and illness, March 2018 is now a record-breaking month with just under 30,000 views.  Here are the top 10 most read articles which contributed to March’s figures:

Shame on you! More stats 1,935
Living with Neuroendocrine Cancer – Home Page More stats 1,334
Can NETs be cured? More stats 881
Background to my Diagnosis and Treatment More stats 861
Namaste Irrfan Khan More stats 849
Lanreotide vs Octreotide More stats 795
Neuroendocrine Cancer – Incurable vs. Terminal More stats 762
“You must be doing OK, you’ve not had chemotherapy” More stats 645
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 628
Neuroendocrine Tumours – benign vs malignant More stats 601
Neuroendocrine Cancer – no treats, just tricks More stats 587
Serotonin – the NET effect More stats 581
RonnyAllan.NET – Community Newsletter February 2018 More stats 542
Neuroendocrine Cancer – not average, just mean More stats 536

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, I’ve set up a chat room here (I’m not the only one who can answer questions!).  This is not a forum, it’s a place to make people feel safe and to discuss.  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 1 Apr 2018, there were 608 people in the group.

New Audiences for NET Cancer

From Day 1, I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. I’m doing this although it may not always be apparent.

  • Facebook has been in the news regarding the security of user’s data.  I am pretty well up to date with security although determined hackers are always a risk.  I take this threat seriously and my personal account is as protected as it can be.  Any signs of suspicious activity on my blog, Facebook pages and group, or indeed any of my social media sites, is dealt with robustly in order to protect you and me.  I managed to get a quote in the WEGO Health article about the issue.  Check it out here.
  • For example. my story was once again featured on World Cancer Day – click here.  Please join my World Cancer Day calendar event to be reminded each year – click here and select ‘Going’.
  • In Feb, my blog site was recommended to health professionals by Dr Jane Maher who is the Chief Medical Officer for Macmillan Cancer Support, one of the biggest Cancer Support organisations in the world.  This was out of the blue but gratefully accepted!  
  • 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 134 times on my personal account which led to over 111,000 views.  I was mentioned 113 times by other tweeters, 3154 people looked at my profile and I gained 35 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!

WEGO Awards

Engagements and Invites

  • Attended a meeting coordinated by NET Patient Foundation about a patient app.  Apparently 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 have been invited to join a medical conference in Berlin as a patient advocate.  This is not a NET conference so is very exciting.  I’ve been asked to contribute to doctor-patient communications and the fear factor of living with cancer (in addition to a patient story of course).
  • I’m getting ready to present a patient experience story in May to a newly established NET Dietitians group in UK – coordinated by the wonderful Tara Whyand.  Very excited about this, a wonderful initiative to tackle an unmet need for patients.

Social Media and Stats

Blog Milestone.  At the end of March, I accelerated past 525,000 blog views! Thank you all so much Keep sharing!  On track for one million by the end of 2019.

Facebook Milestone.  I have my eyes set on 6000 followers by the end of April, could be sooner with your direct involvement!  The Facebook page is now my biggest outlet for awareness and education so please please 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 March.  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 February 2018

Another great start to the year in both NETs in the news and my social media activity. It’s been really cold where I am though!

I’m so busy with personal contacts, I decided to set up a chat room so that other people can help me answer some really difficult questions!  This ‘chat rom’ is not designed to run like a traditional Facebook forum, it’s a place to make people feel safe and to discuss without the usual distractions and dramas that people often encounter. And …. it’s about learning.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people (I already have a few of the latter). It’s also a place where I will bring in expertise to chat about various issues.  The first online chat was held on 28 Feb hosted by a world-renowned NET specialist dietitian – subject was 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 or just search for this group in Facebook – “Neuroendocrine Cancer – Ronny Allan’s Group“. I’m not intending it to be a large group so I’ll be capping it around 1000 to take a few months ‘breather’ before deciding what to do. Please answer the simple questions so I can process quicker.

I caught this news in my social media NET

  1. Whether to cut or not to cut (or watch and wait then cut if necessary) and the sequencing of treatments is a really difficult issue for NET specialists.  I quite liked two video clips that came out last week and they cover this issue quite nicely including some interesting abdominal challenges in surgery:
    a.  Risk Stratification and Management of NETs – click here
    b.  Surgical Considerations for NETs – click here
  2. For patients in UK (England in particular), the long wait for routine access to PRRT could hopefully be coming to an end (despite it being approved in Europe (EU countries) since last year).  Dates are now in the diary for discussion and subsequent ‘announce by’ dates. Fingers crossed.  Read more by clicking here.
  3. ITM announced that 11 trial sites are now open for recruitment to an expansion of PRRT using 177Lu-Edotreotide (Solucin®) – COMPETE Trial.  – Read about it by clicking here.

Blog Site Activity  

Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Feb 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

The Oncolytic Virus AdVince is removed from the freezer ready for the Neuroendocrine Cancer Trial
 Update – Oncolytic Virus Trials for Neuroendocrine Cancer – it’s gone quite on this trial so this is an update.
 Things to do … sometimes it’s OK to do nothing!
Underactive Thyroids – did you know that Somatostatin Analogues can play a part?
   Enterade Trial – interesting development in the battle against diarrhea
  RonnyAllan.NET – Community Newsletter January 2018 – in case you missed it.
  Major restructure and update to Neuroendocrine Hormones

 

February 2018 topped 21,000 views (short month).  Here are the top 10 most read articles which contributed to Feb’s figures:

Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 974
Update – Oncolytic Virus Trials for Neuroendocrine Cancer More stats 755
Neuroendocrine Cancer – Hormones More stats 723
Advanced Oncology Formula enterade® – a breakthrough for NET Patients? More stats 689
Background to my Diagnosis and Treatment More stats 629
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption More stats 578
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 530
RonnyAllan.NET – Community Newsletter January 2018 More stats 476
I now take food with my medicine! More stats 464
Things to do today More stats 441

 

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, I’ve set up a chat room here (I’m not the only one who can answer questions!).  This is not a forum, it’s a place to make people feel safe and to discuss.  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)

New Audiences for NET Cancer

From Day 1, I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. I’m doing this although it may not always be apparent.

  • For example. my story was once again featured on World Cancer Day – click here.  Please join my World Cancer Day calendar event to be reminded each year – click here and select ‘Going’.
  • In Feb, my blog site was recommended to health professionals by Dr Jane Maher who is the Chief Medical Officer for Macmillan Cancer Support, one of the biggest Cancer Support organisations in the world.  This was out of the blue but gratefully accepted!  
  • 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. In the last month, I tweeted 148 times on my personal account which led to over 113,000 views.  I was mentioned 74 times by other tweeters, 2500 people looked at my profile and I gained 32 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.  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!

WEGO Awards

Engagements and Invites

  • Attended a meeting coordinated by NET Patient Foundation about a patient app.  Apparently I’m on the project team – happy to help.
  • I have been invited to join a medical conference in Berlin as a patient advocate.  This is not a NET conference so is very exciting.  I’ve been asked to contribute to doctor-patient communications and the fear factor of living with cancer (in addition to a patient story of course).
  • I’m attending ENETS 2018 in Barcelona.  I’ll be bringing you the latest and relevant news on NETs

Social Media and Stats

Blog Milestone.  At the end of February, I accelerated past 495,000 blog views! Thank you all so much Keep sharing!  On track for half a million by March 9th.

Facebook Milestone.  I have my eyes set on 6000 followers by the end of March, could be sooner with your direct involvement!  The Facebook page is now my biggest outlet for awareness and education so please please 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

Shame on you! More stats 2,064
Neuroendocrine Cancer – no treats, just tricks More stats 1,488
Lutetium Lu 177 dotatate (Lutathera®) – PRRT More stats 1,226
PRRT – The Sequel? – Targeted Alpha-emitter Therapy (TAT) More stats 1,101
Living with Neuroendocrine Cancer – Home Page More stats 1,053
Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) –
the Digested Version (Nutrition Series Article 5)
More stats 899
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 855
“You must be doing OK, you’ve not had chemotherapy” More stats 819
Background to my Diagnosis and Treatment More stats 594
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 36

Other Activity

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 February.  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

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

PRRT – The Sequel? – Clinical trial of Targeted Alpha-emitter Therapy (TAT) –  212 Pb-AR-RMX

Radioimmunotherapy

In 2018, RadioMedix Inc. and Areva (parent company Orano Med) initiated the Phase 1 trial for AlphaMedixTM in patients with somatostatin receptor (SSTR) positive Neuroendocrine Tumors (NETs) – an NIH supported trial.

AlphaMedixTM is composed of a somatostatin analogue radiolabeled with 212Pb, an isotope used for Targeted Alpha-emitter Therapy (TAT).  This open-label, dose escalation study’s objective is to determine safety, bio-distribution, and preliminary effectiveness of 212 Pb-AR-RMX in adult patients with differentiated (sic) NETs. “Targeted Alpha-emitter Therapy (TAT) is the wave of the future in nuclear oncology and has a tremendous potential to treat patients with NET and overcome some of the limitations of current Peptide Receptor Radionuclide Therapy (PRRT)” said Dr. Ebrahim S. Delpassand, Chairman and CEO of RadioMedix, sponsor of the trial. They further announced on 21 Feb 2018 that the first patients had undergone some treatment.

The funding for Phase 2 was granted by NIH on 22 Jan 2019.

What is Targeted Alpha-emitter Therapy?  Targeted Alpha Therapy is based on the coupling of alpha particle emitting radioisotopes to tumour selective carrier molecules, such as monoclonal antibodies or peptides. These molecules have the ability to selectively target tumour cells even if they are spread throughout the body. They recognize the targeted cancer cells through antigens that are expressed on the cell surface and can bind selectively to these cells, similar a key fitting into a lock. In targeted alpha therapy these carrier molecules serve as vehicles to transport the radioisotopes to the cancer cells. This is called the “magic bullet” approach. Radioisotopes that emit alpha particles seem particularly promising to selectively destroy cancer cells. Alpha particles have a high energy in the range of 5-9 MeV and at the same time a very short path length in human tissue below 0.1 mm, corresponding to less than 10 cell diameters. Consequently, the use of alpha emitters allows the specific targeting and killing of individual malignant cells, while minimizing the toxicity to surrounding healthy tissue. Extracted from EU Science Hub

According to the clinical trials document, this drug addresses an unmet need in the field of peptide receptor radionuclide therapy (PRRT) for NETs. Substitution of an alpha emitter (²¹²Pb) for the beta emitters currently being used (i.e., 177Lu or 90Y) will provide significantly higher Linear Energy Transfer (LET) and a shorter path length. Higher LET particles should cause more tumor cell death. Shorter path length should result in less collateral damage of the normal tissue and therefore less side effects for subjects receiving the drug.

What is the difference between PRRT and TAT?  From the scant ‘patient understandable‘ information currently available, it would appear that TAT has the potential to be more targeted and less toxic than PRRT – to me that seems like it would be able to target smaller tumors.  I also noted that TAT is sometimes described as a ‘radioimmuotherapy’ or ‘alpha immunotherpy’, indicating the mechanism of action is significantly different to that of conventional PRRT. It was also described as a ‘Trojan Horse’ which would seem to hint at its immunotherapy credentials.

I noted that TAT is also being studied for use in Prostate Cancer and Leukaemia.

Related articles:

Announcement of Phase 1 Clinical Trial – click here – results to follow.

Funding grant from NIH for Phase 2 – click here

Phase 1 Clinical Trial Document Phase 1 Study of AlphaMedix™ in Adult Subjects With SSTR (+) NET – click here – Phase 2 document to follow.

Areva Med Website – click here

RadioMedix Inc Website – click here

You may also enjoy my articles:

Lutetium Lu 177 dotatate (Lutathera®) – PRRT” – click here.
Expanding PRRT – Trial of 177Lu-Edotreotide (Solucin®) – COMPETE Trial” – click here.
Theranostics – a find and destroy mission” – click here
Ga68 PET Scans – into the unknown” – 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

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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!

patients included

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NET Cancer Blog – Top 6 posts of 2017

Top 6 posts

These are my top performing posts for 2017 – comprising one eighth of my entire hits for the year.  My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015.  A chunk of these figures can be attributed to most of these articles.  Please share to maintain the momentum.

Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017
The Human Anatomy of Neuroendocrine Cancer Making the point that Neuroendocrine Cancer is not confined to a particular part of the body 9,906
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis All about syndromes 7,546
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) The very latest information (particularly about grading) 7,027
Neuroendocrine Cancer – no treats, just tricks A very powerful awareness message.  It was only published 2 months ago and is already the 10th most read post in over 220 since this site was set up. 6,083
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had Love him or hate him, he generates external hits on my site – you could say he is now helping with Neuroendocrine Cancer awareness.  It also debunks the Pancreatic Cancer myth 6,046
Ignore this post about Neuroendocrine Cancer Another very powerful awareness message – it is also the most tweeted post about NETs on twitter 4,812

Thanks for reading

You may also enjoy my article “10 Questions to ask your Doctor” – click here.

Most Viewed Posts – click here

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’

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

patients included


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Neuroendocrine Cancer – normally slow but always sneaky?

 

cancer cells attack

There’s a lot of scary diseases in this world but some of them are particularly spooky.  One such spooky disease is the lesser known type of cancer that infiltrated my body – Neuroendocrine Cancer (aka Neuroendocrine Tumors or NET for short).  Not only is it scary and spooky, but it’s also cunning, devious, misleading, double-crossing, and it likes nothing better than to play tricks on you.

It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum and a host of other places. It can be fiendishly small to avoid being seen.  Once it’s established in the primary location (….or locations), it will try to break out via your blood and lymphatic systems.  It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones and any other place it can get to.

It can often be uncannily quiet, not showing any symptoms. However, sometimes it wants to have fun by over-secreting certain hormones to add or introduce symptoms which mimic many other conditions such as IBS, asthma, abdominal upset, diarrhea, flushing. These are just more tricks up its sleeve.  You will go to your doctor, perhaps many times, to report what looks like routine/regular symptoms. Unfortunately, it’s also really good at tricking your doctors. After several visits and despite your concerns, your doctors could become so frustrated that nothing serious is obvious, they might even start to think it’s all in your head. This is exactly what Neuroendocrine Cancer wants, it’s just getting started.

One particular type of NET has a wicked trick up its sleeve.  This one will over-secrete a hormone called Serotonin which can often cause fibrosis in your abdominal area, potentially causing obstructions and damage to major organs and blood vessels.  It’s not finished though, it will also try to introduce fibrosis to the right side of your heart causing more life threatening issues. In addition to common symptoms of flushing, this type and others will also make you feel weak, fatigued, pain, agitated, anxious, dizzy, nauseous, jaundiced, acid reflux, skin irritation, anemic, lose weight and give you heart palpitations.  It’s a real Witch’s Brew of symptoms and living with it is often not easy.  Its main trick is to prevent you from being correctly diagnosed and it’s pretty good at it.

However, it has a ‘finale’ trick.  Neuroendocrine Cancer actually wants to kill you, and if it’s left to plough its relentless path throughout your body, that’s exactly what it will do, slowly but surely. 

It’s not just slow and scary, it can also be deadly. Spread the word and help save a life.

If you are suspicious you have Neuroendocrine Cancer but not yet formally diagnosed, you may appreciate this article.

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

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

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This is a Patients Included Site

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Genetics and Neuroendocrine Tumors


In my article ‘Ever wonder what caused your NET’, I concluded that currently, the only known scientifically explained causes for NETs were hereditary/genetic in nature.  This is mostly associated with those who have MEN syndromes (yes, they are a syndrome not a type of tumour) and a few other less common types of NET including Pheochomocytoma/Paraganglioma (Pheo/Para) and Medullary Thyroid Carcinoma (MTC) (the familial version of MTC is often referred to as FMTC). However, please note this does not mean that all those diagnosed with pancreatic, parathyroid, pituarity, Pheo/Para and MTC tumours, will have any hereditary or genetic conditions, many will simply be sporadic tumors.

In recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing.

Apparently, 5-10% of Gastroenteropancreatic NETs (GEP NETs) are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumors (perhaps along with an associated functional hormone syndrome) and so the genetic condition if there is one, may not be known at this point.

genetics locations
Overview of genes with recurrent mutations in NETs and their distribution accordingly to anatomical location. Please note the percentages on the above diagram may differ depending on where you look).  
Citation: European Journal of Endocrinology 174, 6; 10.1530/EJE-15-0972

How will I know if I am affected? 

Some people do worry about this, often because of what they find on the internet including inside patient forums.  I suspect some people already know via family connections and as an example (there are many), I guess if you have 2 tumors found in (say) parathyroid and pancreas, it should at least raise a suspicion for MEN1 and be investigated.

Many people say how do I know, how do I check and this is obviously a delicate subject.  Of course, your first port of call should be your NET specialist if you suspect or know of any connection.

Thus why I was interested in a paper published in Springer Link – titled “When should genetic testing be performed in patients with neuroendocrine tumours.”  When reading, you’ll find it’s actually much more than that! Check it out here:

Crossref DOI link: https://doi.org/10.1007/s11154-017-9430-3

In this review, the authors examined the features which may lead a clinician to suspect that a patient may have an inherited cause of a NET and they outlined which underlying conditions should be suspected. They also discussed what type of screening may be appropriate in a variety of situations. If there is a way to identify which patients are likely to have a germline mutation, this would enable clinicians to counsel patients adequately about their future disease risk, and allows for earlier detection of at-risk patients through family screening. There’s a couple of minor errors in the text but I’ve contacted the authors who also agreed they should have included the pituitary.

The authors focused on presentations of NETs of the gastrointestinal system, chromaffin cell tumours (Pheochromocytoma and Paraganglioma) and Medullary Thyroid Carcinoma. Pituitary tumors (normally associated with MEN1), were not considered in scope for the review.  Interesting thought, the review includes news of a move by endocrinologists to reclassify ‘Pituitary Adenomas’ as Pituitary NETs (PitNETs). Read the abstract here.  This would appear to be in line with a gradual shift from the benign nomenclature associated with certain NETs to the ‘malignant’ potential of these type of tumors.  The abbreviation is also in line with others, e.g. pNET, SiNET, etc.  A useful reminder that we must stop using the term ‘Carcinoid‘ as this is regressing this extremely useful initiative to highlight the malignant potential of all NETs.

There also appears to be some linkage to the study looking at the possibility of familial Small Intestine NETs (SiNETs).  You can read more about a US registered trial here (with apologies for use of the now defunct term ‘Carcinoid‘).

This is a complex subject and the text above is very basic. If you wish to dig further, the quoted reference is a good read.  Just to emphasise, it’s aim is to provide advice about when to recommend genetic testing for NETs, and in doing so provides some useful reference information.  Please also note they are finding new genetic links all the time so there could be some omissions of recently discovered genes but the article remains good enough as a primer on the subject.  It’s broken down into 4 distinct tumor groupings:

1.  Gastroenteropancreatic (GEP NETs)

2.  Bronchial/Thymic NETs

3.  Pheochromocytoma/Paraganglioma  The familial connection with Pheo/Para is complex. Up to 13 genes have been identified including NF1, RET, VHL, SDHA, SDHB, SDHC, SDHD, SDHAF2(SDH5), TMEM127, MAXm EPAS1, FH, MDH2.  Read more here (recent update)The NIH also have a useful section – click here.

4.  Medullary Thyroid Carcinoma

You may also find this article from the National Cancer Institute very useful.  It has a wider scope but a different aim. Genetics of Endocrine and Neuroendocrine Neoplasias (PDQ®)–Health Professional Version”

I also noted the UKINETS Guidelines for NETs has a section on genetics and includes something called Carney Complex.

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

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

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Ever wonder what caused your NET?

DNA strand and Cancer Cell

OPINION.  When you’re diagnosed, you go through a whole host of emotions. It’s not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words “you have cancer”, it’s other stuff such as anger and denial.  With the latter, the denial normally wears off as you finally accept the predicament.

In hindsight, the anger is interesting because there can be a mixture of thoughts including “why me“, “what could I have done to head this off“; and would you believe I was even angry that my diagnosis was going to affect my performance at work and even my personal credibility.  We all react differently but in general terms our experiences can be categorised into 3 main areas: initial reaction, distress and then adjustment.

Initially, I was frustrated I didn’t know what had caused my cancer, perhaps my thinking was that I could warn others.  Those feelings soon wore off as I discovered that no-one really knows why people succumb to certain cancers.

If you don’t know what caused your NET, you’re not alone.  According to several studies in the past 10 years, around 40% of cancers are preventable indicating that up to 60% might just be plain bad luck. Clearly this figure varies between cancer types with the biggest culprits being Lung and Skin cancer with too much exposure to tobacco and ultraviolet light respectively. However, the reports also pointed out that people can and will still get these cancers without significant exposure to the commonly preventable causes. The latest study is interesting because it raises the issue that some cancers may be totally unavoidable as they are caused by random errors associated with DNA replication.  This study remains controversial because it undermines government prevention strategies. There’s a balanced article from Cancer Research UK which is a useful read (interesting quote … “Even if, as this study suggests, most individual cancer mutations are due to random chance, the researchers admit that the cancers they cause may still be preventable”).

I carried out some research and discovered the only currently known causes of NETs are heredity/genetic in nature and this only affects a small proportion of all NETs.  As for the remainder, will we ever know?  Perhaps one day but in my opinion, not anytime soon.  One interesting find is a study funded by NET Research Foundation which is designed to discover the molecular causes of a Small Intestine NET (SiNET).  In addition, they will investigate potential environmental causes, including epigenomic and infectious causes.

I often think about what actually caused my NET but I no longer worry about what the answer might be.  I’m the first to admit I could have led a healthier life (like many others) but that may not have had any impact or involvement in my cancer diagnosis.  There doesn’t seem to be any point worrying because the clock cannot be turned back …..even if I knew, I would still have metastatic NETs. However, if the cause of my cancer was connected to a heredity condition, clearly this would be important to know. That’s only my own opinion though.

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’

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


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NETwork with Ronny © – Newsletter March 2017

 

Hi NETworkers!

Welcome to my fifth ‘community’ newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!).

The highlight of the month was my attendance at the first ever Joint Patient-Physician symposium at ENETS Barcelona.  I remain thankful to INCA for the honour of attending and for the experience that came with it. It was also great to finally meet other NET advocates face to face for the first time.  Some of them have been great supporters since the inception of my blog and community.

with Grace Goldstein from Carcinoid Cancer Foundation

March was a slower month in blogging terms due to a number of external projects and a continuing flow of private messages. I don’t have an issue with private contact but please note my disclaimer. My winter cold extended into March including during the ENETS/INCA symposium and although I had no voice, I still managed a question to the panel.

Despite a low number of blogs, I still managed to accumulate the second biggest monthly blog views ever. Thank you all so much 

New Blogs Published

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline.  So, ICYMI …….here’s a summary with links:

Other News in Mar 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness). 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. Click this link and sign up if you think this is something you’d be interested in receiving.  I almost doubled the amount of subscribers in March! Currently 168.
  • I’m making new friends in the interventional radiologist community and am waiting on a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do! I’m also seeing an increase from the Pathology community.
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.

Patients Included.  A new campaign for 2017. I was excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March. I have really good information which will feed into my blogs, either as updates or new blogs. This new blog is a result of attending this symposium but it’s from an existing campaign run along the ‘Consequences’ campaign run by Macmillan Cancer Support for all cancers. In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

the first question to the first ever joint patient-physician symposium. Hardly any voice due to a winter cold

Blog Milestone.  In March, I tipped over the quarter of a million views! Thank you all so much Keep sharing!

Facebook Milestone.  I’m aiming for 5000 by year-end and this is on track. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.  The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.

capture-invite-friends

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 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!  You can follow me here:  Click here to go to my Instagram page

Figures

Where did March Blog views come from? – Top 11 countries:  Denmark is a new entry.

 

 

For interest. the 10 Ten Facebook followers by Country – Spain overtakes France 🙂

Thanks for your great support in March.

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

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community_titled_transparent_2013-10-22

NETwork with Ronny © – Newsletter February 2017

network-with-ronny

Hi NETworkers!

Welcome to my fourth ‘community’ newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!).

February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don’t have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat).  Thank you all so much 

January’s success also led to increased Facebook followers and I broke through the 4000 milestone with a plan to reach 5000 by the end of the year or before.  If I grew at January’s rate, it could easily be 6000 but that’s probably wishful thinking!

The month ended with a bang!  The long-awaited FDA approval of ‘XERMELO’ (Telotristat Ethyl) was announced yesterday. Check out my blog which has all the links you need in one area.  Click here to read

New Blogs Published

Due to the vagaries of Facebook inner workings, some of these may not have even shown on your Facebook timeline.  So, ICYMI …….here’s a summary with links:

Other News in Feb 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there.  I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness).   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.  Click this link and sign up if you think this is something you’d be interested in receiving.  I reached 100 email subscribers today!
  • I’m making new friends in the interventional radiologist community having been invited to join their twitter chat.  That turned out to be profitable as I won $40 of Starbucks e-gifts for being a quick tweeter!  I now have some new friends who are producing a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do!
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum.  I’ll be reporting more on this in the coming weeks.

Patients Included.  A new campaign for 2017.  I’m very excited to have been invited to the first ever joint Patient-Physician symposium at the annual ENETS conference in Barcelona 8 – 11 March.  I’m being sponsored by the International Neuroendocrine Cancer Alliance (INCA). I’ll be tweeting and posting stuff live from the conference, look out for this.

Blog Milestone.  Accelerated viewing figures should put me into a quarter of a million blog views by the end of this month! Thank you all so much Keep sharing!

Facebook Milestone.  My Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.  The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.

capture-invite-friends

Instagram

I’m expanding into Instagram to see how that goes.  Initially I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!   You can follow me here:  Click here to go to my Instagram page

Figures

Where did February Blog views come from? – Top 10 countries:

capture-10-ten-country-feb-17

For interest the 10 Ten Facebook followers by Country:

capture

Thanks for your great support in February.

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

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community_titled_transparent_2013-10-22

NETwork with Ronny © – Newsletter January 2017

network-with-ronny

Hi NETworkers!

Welcome to my third ‘community’ newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!).

January was a month for breaking records.  I recorded the biggest ever amount of views in any one day, any one week and now any one month and it will probably be a long time before they’re broken again! This was mainly due to the fantastic support you showed for one particular blog post The Anatomy Of Neuroendocrine Cancer.  Thank you all so much 

January was also a month for making new friends after being invited to speak to an audience of 30 pharma managers at Ipsen’s Germany HQ near Karlsruhe.  I was made very welcome by the Ipsen staff and I think it’s great they want to hear the patient voice.  Bad weather was coming in fast and I only just escaped in time from Frankfurt Airport, suffering a 2 hour delay while the plane was ‘de-iced’.  Nonetheless, I really enjoyed a flying visit to a country where I had lived for 12 years in the 70s/80s.  See my Facebook post about this visit: https://goo.gl/hyJ0Si

New Blogs Published

A busy month for new blogs. Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links:

Other News in Jan 2017

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.  Two new openings in Dec to report:

  • Ipsen isn’t really a new audience but the individual employees at their German HQ are now more aware of life with Neuroendocrine Cancer.  See my Facebook post about this visit: https://goo.gl/hyJ0Si
  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there.  I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness).   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.  You can sign up for this newsletter here as I won’t be posting it every day.  Click this link and sign up if you think this is something you’d be interested in receiving.
  • I’m making new friends in the interventional radiologist community having been invited to join their twitter chat.  Many of us will know an Interventional Radiologist (some are known as Interventional Oncologists) following treatment (e.g. a liver embolization). I’m hoping to soon have access to some great videos about their work with NETs.
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum.  I’ll be reporting on this in the coming weeks.

Patients Included.  A new campaign for 2017 and I’ll shortly be bringing you news of an opportunity in Mar 2017.  We want to be included right?

Blog Milestone.  My blog tipped over 220,000 views in Jan and I’m half way from the 1 Jan position to reaching a quarter of a million.  Thanks – keep sharing!

Facebook Milestone.  My Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.  The picture of the invite button shown here is an example from a windows computer, it may differ on other platforms.

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Figures

Where did January Blog views come from – Top 10 countries:

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For interest the 10 Ten Facebook followers by City:

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Thanks for your great support in January – a great start to 2017.

 

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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Neuroendocrine Tumor Drug Clinical Trial – Cabozantinib (includes news on Pheochromoctyoma and Paraganglioma)

What is Cabozantinib?

Cabozantinib is an oral drug which works by blocking the growth of new blood vessels that feed a tumour. In addition to blocking the formation of new blood cells in tumours, Cabozantinib also blocks pathways that may be responsible for allowing cancers cells to become resistant to other “anti-angiogenic” drugs. It is a type of drug called a growth blocker.  Cabozantinib has been studied or is already in research studies as a possible treatment for various types of cancer, including prostate cancer, ovarian cancer, brain cancer, thyroid cancer, lung cancer, and kidney cancer. During my research, I found that it has a connection to Medullary Thyroid Cancer (MTC) which is a type of Neuroendocrine Cancer, frequently associated with Multiple Endocrine Neoplasia (MEN).  Cabozantinib, under the brand name of ‘Cometriq’ was approved by the FDA in 2012 for use in MTC.  Read more about Cometriq here.  It’s also been approved by the FDA for advanced renal cell carcinoma (RCC) (branded as Cabometyx). I also discovered that there is an exclusive licensing Agreement with the manufacturers (Elelixis) and Ipsen (of Lanreotide fame) to commercialize and develop Cabozantinib in regions outside the United States, Canada and Japan

Growth blockers are a type of biological therapy and include tyrosine kinase inhibitors, proteasome inhibitors, mTOR inhibitors, PI3K inhibitors, histone deacetylase inhibitors and hedgehog pathway blockers.  Cabozantinib is a tyrosine kinase inhibitor (TKI).  They block chemical messengers (enzymes) called tyrosine kinases.  Tyrosine kinases help to send growth signals in cells so blocking them stop the cell growing and dividing.  Some TKIs can block more than one tyrosine kinase and these are known as multi-TKIs.

cabozantinib-picture
Example action of Cabozantinib

So Capozantinib is a tyrosine kinase inhibitor and is therefore a biological therapy and growth blocker just like Everolimus (Afinitor) and Sunitinib (Sutent) – some texts describe thelattero two as chemotherapy but this is just not accurate.

Very technical process but in the simplest of terms, Cabozantinib is designed to disrupt the actions of VEGF (a growth factor) and MET (a growth factor receptor) which promote spread of cancerous cells through the growth of new blood vessels.  Whilst we are on this subject, please note Everolimus (Afinitor) is an mTOR inhibitor and Sunitinib (Sutent) is a tyrosine kinase inhibitor. Many people think these drugs are a type of chemo – that is incorrect, these are targeted biological therapies.  See more on this by clicking here.

What is the current trial status of Capozantinib?

A Phase III trial is now recruiting entitled Cabozantinib S-malate in Treating Patients With Neuroendocrine Tumors Previously Treated With Everolimus That Are Locally Advanced, Metastatic, or Cannot Be Removed by Surgery”. 

The trial has 172 locations across the US (see link below). The primary study (final data) is scheduled Jan 1st 2021.

You can read the trial documentation by clicking here.

Progress report

  1. Poster submission for 2017 Gastrointestinal Cancer Symposium
  2. Onc Live output from the 2017 Gastrointestinal Cancer Symposium
  3. Output from NANETS 2017
  4. A funded piece of research by the NET Research Foundation – check it out herelooks like they are trying to figure out what patients might benefit from Cabozantinib using biomarker data to predict response.
  5. Dr Jennifer Chan speaking in 2018 about the drug potential.  (Apologies for the use of the out of date term ‘Carcinoid‘).
  6. Phase 3 Clinical Trial Document – click here

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UPDATED 2018 – There’s also another trial looking at unresectable metastatic Pheochromocytomas and Paragangliomas

A Phase 2 Study to Evaluate the Effects of Cabozantinib in Patients with Unresectable Metastatic Pheochromocytomas and Paragangliomas 

This part is from an article collaboration between MedPage Today® and the American Association of Clinical Endocrinologists

BOSTON — Cabozantinib (Cabometyx) may benefit patients with malignant pheochromocytomas and paragangliomas, according to results of a phase II trial presented here.

Patients receiving cabozantinib (Cometriq) treatment experienced notable tumor shrinkage in the lymph nodes, liver, and lung metastases, according to Camilo Jimenez, MD, of the MD Anderson Cancer Center in Houston, and colleagues.

Additionally, progression-free survival significantly increased after treated to 12.1 months (range 0.9-28) compared with just 3.2 months prior to treatment, they reported at the American Association of Clinical Endocrinologists (AACE) annual meeting.

Cabozantinib treatment was also tied to an improvement in blood pressure and performance status, as well as remission of diabetes among these patients.

“Malignant pheochromocytomas and paragangliomas are frequently characterized by an excessive secretion of catecholamines. [Patients] have a large tumor burden and they have a decreased overall survival,” explained Jimenez. “Tumors are frequently very vascular and frequently associated with bone metastases. In fact, up to 20% of patients who have malignancy of pheochromocytomas and paragangliomas may have predominant bone metastases.”

He added that “an interesting aspect of this tumor is that C-MET receptor mutation have been found in occasional patients with malignant pheochromocytomas and paragangliomas.”

Cabozantinib is an anti-angiogenic tyrosine kinase inhibitor, which also targets RET, MET, and AXL. It is approved for metastatic medullary thyroid cancer, and was more recently approved for first-line treatment of advanced renal cell carcinoma.

“MET pathway is also involved in the development of bone metastases. In fact, cabozantinib is a very effective medications for patients who have bone metastases in the context of cancer of different origins,” Jimenez said.

In order to be eligible for the trial, patients with confirmed pheochromocytoma or paraganglioma had to be ineligible for curative surgery, have ≥3 months life expectancy, no risk for perforation or fistula, and adequate organ functioning. Prior to cabozantinib initiation, patients could not receive chemotherapy or biologic agents within 6 weeks, radiation within 4 weeks, or MIBG within 6 months.

Following histological confirmation of disease progression >1 year according to RECIST 1.1, the trial included 14 patients with measurable disease and eight patients with predominant/exclusive bone metastases. Fifteen patients subsequently enrolled into the trial, six of whom had germline mutations of the SDHB gene.

All participants were all started at an initial daily dose of 60 mg of cabozantinib, which was subsequently reduced down to between 40 to 20 mg due to toxicity in 13 patients based on tolerance.

The majority of these patients with measurable disease experienced some level of disease response. Six patients reported a partial response, defined as over a 30% reduction, while three patients achieved moderate response, marked by a 15%-30% reduction. Five of the patients with predominant bone metastases reported disease stabilization, according to results of an FDG-PET scan. One patient experienced disease progression while on treatment.

Overall, cabozantinib was generally well-tolerated without any grade 4 or 5 treatment-related adverse events reported. Some of the most common adverse events reported included grade mild dysgeusia, hand and foot syndrome, mucositis, fatigue, weight loss, and hypertension, according to the authors.

  • Primary Source – American Association of Clinical Endocrinologists meeting – AACE 2018; Abstract 142. attended my Medscape writers

You can see the Pheo/Para clinical trial document by clicking here.

————————————–

Summary

I generated this blog article to add value rather than just post the outputs for your own perusal.  I hope you find it useful.

Please note that taking part in a clinical trial is a big decision and must be considered carefully in conjunction with your specialists if necessary.  This article is not suggesting this trial is right for you.  Please check the inclusion and exclusion criteria in the trials document carefully. (Pheo/Para patients see other clinical trial link above)

NETwork with Ronny © – Newsletter December 2016

 

Hi NETworkers!

Welcome to my second ‘community’ newsletter, the monthly summary of NET news in Dec 2016, views and ICYMI (in case you missed it!).

December was a particularly special month.  For the previous 3 months, I had been busily working behind the scenes and on my various social media presences to put on a good show for the 2016 WEGO Health Activist Awards.  This paid off and I won the Best in Show ‘Community’ category in addition to being shortlisted as one of 5 finalists in the blog category.  The community award was special because it means we all won the award as a part of this ‘Community’.  I’ve picked up a whole new bunch of friends outside the NET world bringing much-needed exposure to NET Cancer. I had a quiet week resting before I resumed normal activity and then a sprint finish at the end of the month took me over the magic 10,000 blog hits figure (and even more on Facebook).  Stick with me because I really need your help and support and anyone else you know who can assist.  The WEGO awards brought a significant increase in twitter followers.

Blogging

A quiet month in terms of numbers of blogs. Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links:

  • My Nov Newsletter!
  • A blog all about Carcinoid Crisis – potentially one of the most important pieces of information you need to know.  Read here.
  • My award announcement!
  • First in a series of ‘spotlight on ……’ posts – this one on Pheochromocytomas and Paragangliomas.  Read here.
  • I shared an inspiration message with you – one that I received from an old friend. Read ‘Keep your light burning’ which had a great response.
  • Confused about the difference between Lanreotide and Octreotide?  This blog will help – it got a really good response and you can read it here.  I also received lots of questions about the individual drugs which was great and shows the importance of this subject to patients out there.

Other News in Dec

New Audiences for NET Cancer.  From Day 1, I said it was my aim to find new audiences for NETS rather than just share stuff within our own community.  Two new openings in Dec to report:

  • The exposure during the build up to the 2016 WEGO Health Activist Awards where I made the final in two categories continued into Dec culminating in the award win (you can listen to the announcement live here).  I also featured in a radio show just before the announcement and you can listen to it here (start at 40.30).
  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there.  I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness).   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.  You can sign up for this newsletter here as I wont be posting it every day.  Click this link and sign up if you think this is something  you’d be interested in receiving.

Blog Milestone.  My blog tipped over 200,000 views in Dec and it’s already accelerating toward a quarter of a million.  Thanks – keep sharing!

Facebook Milestone.  My Facebook page was 2 years old in Dec 🙂  Please recommend this page to anyone you think would be interested.

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Invite or recommend my page please – let’s grow awareness!

Figures

Where did December Blog views come from – Top 10 countries (Dominican Republic seems to be a new source of interest):

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For interest the 10 Ten Facebook followers by Country.

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Thanks for your great support in December.  Looking forward to serving you in 2017!

Ronny

Hey Guys, I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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Neuroendocrine Neoplasms (NEN) – benign vs malignant

Kunz His belief these tumors did not metastisize

OPINION:

One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the ‘benign vs malignant’ question.  It’s been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (….or not been told). I don’t believe it’s an exact science and can be challenging for a NET specialist let alone a doctor who is not familiar with the disease.

NANETS Guidance talks about the ‘…heterogeneous clinical presentations and varying degrees of aggressiveness‘ and ‘…there are many aspects to the treatment of neuroendocrine tumours that remain unclear and controversial‘.  I’m sure the ‘benign vs malignant’ issue plays a part in these statements.

In another example, ENETS Guidance discusses (e.g.) Small Intestine Tumours (Si-NETs) stating that they ‘derive from serotonin-producing enterochromaffin cells. The biology of these tumors is different from other NENs of the digestive tract, characterized by a low proliferation rate [the vast majority are grade 1 (G1) and G2], they are often indolent’.  However, they then go on to say that ‘Si-NETs are often discovered at an advanced disease stage – regional disease (36%) and distant metastasis (48%) are present‘.  It follows that the term ‘indolent‘ does not mean they are not dangerous and can be ignored and written off as ‘benign’. This presents a huge challenge to physicians when deciding whether to cut or not to cut.

Definitions

To fully understand this issue, I studied some basic (but very widely accepted) definitions of cancer.  I also need to bring the ‘C’ word into the equation (Carcinoid), because the history of these tumours is frequently where a lot of the confusion lies.  The use of the out of date term by both patients, patient advocates and doctors exacerbates the issue given that it decodes to ‘carcinoma like‘ which infers it is not a proper cancer.  See more below.

Let’s look at these definitions provided by the National Cancer Institute.  Please note I could have selected a number of organisations but in general, they all tend to agree with these definitions give or take a few words. These definitions help with understanding as there can be an associated ‘tumour’ vs ‘cancer’ debate too.

Cancer – Cancer is the name given to a collection of related diseases. In all types of cancer, some of the body’s cells begin to divide without stopping and spread into surrounding tissues. There are more than 100 types of cancer which are usually named for the organs or tissues where the cancers form.  However, they also may be described by the type of cell that formed them.

Author’s note: The last sentence is important for Neuroendocrine Tumour awareness (i.e. Neuroendocrine Tumour of the Pancreas rather than Pancreatic Cancer).

Carcinoma – Carcinomas are the most common grouping of cancer types. They are formed by epithelial cells, which are the cells that cover the inside and outside surfaces of the body. There are many types of epithelial cells, which often have a column-like shape when viewed under a microscope.

Author’s note: By definition, Carcinomas are malignant, i.e. they are without question malignant cancers. Poorly differentiated Neuroendocrine Neoplasms are deemed to be a ‘Neuroendocrine Carcinoma’ according to the most recent World Health Organisation (WHO) classification of Neuroendocrine Tumours (2017) and ENETS 2016 Guidance. You will have heard of some of the types of Carcinoma such as ‘Adenocarcinoma’ (incidentally, the term ‘Adeno’ simply means ‘gland’). It follows that Grade 3 Neuroendocrine Carcinomas (NEC) are beyond the scope of this discussion.

Malignant – Cancerous. Malignant cells can invade and destroy nearby tissue and spread to other parts of the body.

Benign – Not cancerous. Benign tumors may grow larger but do not spread to other parts of the body.

Author’s Note: This is a key definition because there are people out there who think that low grade NETs are not cancer. 

Tumour (Tumor) – An abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumors may be benign (not cancerous), or malignant (cancerous). Also called Neoplasm.

Author’s Note: Neoplasm is an interesting term as this is what is frequently used by ENETS and NANETS in their technical documentation, sometimes to cover all Neuroendocrine types of cancer (Tumor and Carcinoma). It follows that a malignant tumour is Cancer. The term “Malignant Neuroendocrine Tumour” is the same as saying “Neuroendocrine Cancer”

Neuroendocrine Tumours – Benign or Malignant?

Definitions out of the way, I have studied the ENETSUKINETS and NANETS guidance both of which are based on internationally recognised classification schemes (i.e. the World Health Organisation (WHO)).

In older versions of the WHO classification schemes (1980 and 2000), the words ‘benign’ and ‘uncertain behaviour’ were used for Grades 1 and 2. However, the 2010 edition, the classification is fundamentally different (as is the recent 2017 publication).  Firstly, it separated out grade and stage for the first time (stage would now be covered by internationally accepted staging systems such as TNM – Tumour, (Lymph) Nodes, Metastasis). Additionally, and this is key to the benign vs malignant discussion, the WHO 2010 classification is based on the concept that all NETs have malignant potential.  Here’s a quote from the UKINETS 2011 Guidelines (Ramage, Caplin, Meyer, Grossman, et al).

Tumours should be classified according to the WHO 2010 classification (Bosman FT, Carneiro F, Hruban RH, et al. WHO Classification of Tumours of the Digestive System. Lyon: IARC, 2010). This classification is fundamentally different from the WHO 2000 classification scheme, as it no longer combines stage related information with the two-tiered system of well and poorly differentiated NETs. The WHO 2010 classification is based on the concept that all NETs have malignant potential, and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential.

The guidance in 2017 WHO reinforces this statement to include endocrine organs, including the pancreas and adrenal glands.

The C Word (Carcinoid) – part of the problem?

History lesson – Carcinoid tumours were first identified as a specific, distinct type of growth in the mid-1800’s, and the name “karzinoide” was first applied in 1907 by German pathlogist Siegfried Oberndorfer in Europe in an attempt to designate these tumors as midway between carcinomas (cancers) and adenomas (benign tumors).

The word ‘Carcinoid’ originates from the term ‘Carcinoma-like’.  ‘CARCIN’ is a truncation of Carcinoma. ‘OID’ is a suffix used in medical parlance meaning ‘resembling’ or ‘like’.  This is why many people think that Carcinoid is not a proper cancer.

The situation is made even more confusing by those who use the term “Carcinoid and Neuroendocrine Tumors” inferring that it is a separate disease from the widely accepted and correct term ‘Neuroendocrine Tumor’ or Neuroendocrine Neoplasm.  A separate discussion on this subject can be found in this post here. I encourage you to stop using the term ‘Carcinoid’ which is just perpetuating the problem. 

Kunz His belief these tumors did not metastisize

How are NENs Classified?

If you read any NET support website it will normally begin by stating that Neuroendocrine Tumours constitute a heterogeneous group of tumours. This means they are a wide-ranging group of different types of tumours.  However, the latest WHO classification scheme uses the terms ‘Neuroendocrine Tumour’ for well differentiated Grade 1 (low-grade), Grade 2 (Intermediate Grade) and Grade 3 (High Grade) NET; and ‘Neuroendocrine Carcinoma’ (NEC) for  poorly differentiated tumours which are by default grade 3 or high grade. They also use the term ‘Neoplasm’ to encompass all types of NET and NEC. So Grade 1 is a low-grade malignancy and so on (i.e any grade of NET is a malignant tumour).  You may benefit from reading my blog article on Staging and Grading of NETs as this is also a poorly understood area.

Can some NETs be Benign?

By any accepted definition of cancer terms, a tumour can be non-cancerous (benign) or cancerous (malignant).  This is correct for any cancer type. For example, the word is used in the 2016 version of Inter Science Institute publication on Neuroendocrine Tumors, a document I frequently reference in my blog.  For example, I’ve seen statements such as “These tumors are most commonly benign (90%)” in relation to Insulinoma (a type of Pancreatic NET or pNET). Ditto for Pheochromocytoma (an adrenal gland NET).  Adrenal and Pituitary ‘adenomas’ are by definition benign (adenoma is the benign version of Adenocarcinoma).  And I note that there is a ‘benign’ code option for every single NET listed in the WHO International Classification of Diseases (ICD) system.

The ‘BUT‘ is this – all WHO classification systems are based on the concept that NETs always have malignant potential.  The WHO 2017 classification update confirmed this thinking by adding endocrine organs including the pancreas and adrenal glands.

don't worry it's benign widescreen

Can Tumours be Malignant or become Malignant?

Using the definition above, if a tumour invades and destroy nearby tissue and spread to other parts of the body, then it’s malignant (i.e  Cancer). However, there’s a reason why the WHO declared in 2010 that all NETs have malignant potential (as amplified in WHO 2017). It may not happen or it may happen slowly over time but as Dr Richard Warner says, “they don’t all fulfill their malignant potential, but they all have that possible outcome”.  Thus why ongoing surveillance is important after any diagnosis of Neuroendocrine Tumour of any grade or at any stage.  Dr Lowell Anthony, a NET Specialist from the University of Kentucky explains this much better than I can – CLICK HERE to hear his two-minute video clip.  This issue even caused confusion with doctors, some of whom still think a Stage 4 NET is still benign. Not only is this very insensitive to the patient concerned but it also goes against all the definitions of ‘benign’ and ‘malignant’ that exist in authoritative texts.

Summary

This was a difficult piece of research. I do believe there are scenarios where NETs will be benign and probably never cause the person any real harm (e.g. many are found on autopsies). I  suspect this is the same for many cancers. However, based on the above text and the stories of people who have presented for a second time but with metastatic disease, use of the word ‘benign’ is probably best used with great care.

I would certainly (at least) raise an eyebrow if someone said to anyone with any NET tumour, “you don’t need any treatment or surveillance for a NET”; or “it has been cured and no further treatment or surveillance is required”.  Particularly if they are not a NET specialist or a recognised NET Centre.

Remember, I’m not a medical professional, so if you are in any doubt as to the status of your NET, you should discuss this directly with your specialist.  A good place to start is evidence of your Grade, Differentiation, Primary Site Location and Stage.

You may be interested in reading these associated posts:

Carcinoid vs Neuroendocrine

Neuroendocrine Neoplasms – Grading and Staging (WHO 2017)

Incurable vs Terminal

10 Questions for your doctor

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.


patients included
Please Share this post for Neuroendocrine Cancer awareness and to help another patient

 

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

chemo

If there’s a word which is synonymous with cancer, it’s chemotherapy.  It’s what most people have in their mind when they are talking to a cancer patient…… ‘have you had chemotherapy‘ or ‘when do you start chemotherapy‘.

I was nonchalantly asked by a friend some time ago ‘how did you get on with chemotherapy’ – he was surprised to hear I hadn’t had it despite my widespread disease.  Cue – lengthy explanation!  I wasn’t annoyed by the question, I just think people automatically assume every cancer patient has to undergo some form of systemic chemotherapy.  If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair.

Sure, chemotherapy is not the nicest treatment to receive and it does have pretty awful side effects for most. I watched my daughter-in-law go through 3 or 4 months of this treatment where she was literally confined to a combination of her bedroom and her bathroom.  And it did shock me to see her without hair.  I would never want anyone to go through that and it really brings it home when it happens to a close member of your family.

Despite its bad press in regards toxicity and it’s awful side effects, chemotherapy is widely used in many cancers.  Statistics show that it does work for many patients (….. my daughter-in-law is still here looking after two of my four grandsons and my son still has a wife ♥).  However, I suspect it has a limited future as more efficient and less toxic drugs and delivery systems come online downstream.  Immunotherapy is often touted as a replacement for chemotherapy but this may be a while yet.  So for now, millions of cancer patients worldwide will continue to be prescribed chemotherapy as part of their treatment regime.

However, for some cancers, chemotherapy is not particularly effective. Neuroendocrine Cancer (NETs) is one such cancer. In general, NETs do not show a high degree of sensitivity to chemotherapy. For example, it’s often inadequate for the treatment of well-differentiated tumours with a low proliferation index but can be more effective in particular anatomical locations. The one exception is for high grade tumours (known as Neuroendocrine Carcinoma if poorly differentiated) where chemotherapy is much more likely to feature.  I’m not saying that the lower grades will never receive chemotherapy – that door is always left open for those with progressive cancer who perhaps have run out of treatment options.  Putting Grade 3 to one side, I’ve heard people say that NETs is the ‘good cancer or the ‘good looking’ cancer often citing the chemotherapy thing as some justification. That is of course a stupid thing to say.  I accept that not everyone will lose their hair and not every chemo will cause hair loss.

Here’s the rub.  Many other treatments come with pretty challenging side effects. Moreover, the side effects and the consequences of these other treatments can last for some time, and for many, a lifetime. For example with NETs:

Surgery can be pretty extensive, in some cases radical and life changing.  Many cancer patients receive surgery for NETs which is still the only real ‘curative’ treatment, although for most, it’s cytoreductive or palliative in nature.  If you lose bits of your small intestine, large intestine, liver, spleen, cecum and appendix, gallbladder, stomach, rectum, lungs, pancreas, thyroid, parathyroids, pituitary gland, adrenal gland, thymus gland, ovaries, oesophagus (…….I could go on), this comes with various side effects which can present some quality of life issues.  There can be huge consequences of having this treatment.

Other ‘consequences’ of cancer surgery include (but are not limited to), pulmonary emboli (blood clots), lymphedema, short bowel syndrome, gastrointestinal malabsorption, diabetes.

Somatostatin Analogues do a great job but they do add to some of the effects of surgery (mainly malabsorption).

Even the so-called ‘silver bullet’ treatment Peptide Receptor Radio Nuclide Therapy (PRRT) can have pretty severe side effects and presents some risk to kidneys and bone marrow as a long term consequence.

I’ve not had chemotherapy and I would rather avoid it if I can. However, as I’ve hinted above, there are other harsh (….perhaps harsher?) treatments out there. Moreover, whilst hair normally grows back, your small intestines, lungs and pancreas won’t.  Many people will have to live for the rest of their life with the consequences of their cancer and its treatment.

It sometimes appears that every other cancer article involves someone undergoing chemotherapy.  I just wish someone would write an article about my lack of terminal ileum and ascending colon, the malabsorption issues as a consequence of that, my missing mesenteric lymph nodes, my retroperitoneal fibrosis, not forgetting to mention my diseased liver, my left axillary lymph nodes (and the mild lymphedema I now have after their removal), my left supraclavicular lymph nodes, my suspect thyroid lesion and my hypothyroidism which may be due to that, my small lung nodule and my pulmonary emboli which after nearly 6 years of daily injections means my abdomen looks and feels like I’ve done 12 rounds with Mike Tyson.  However, it just wouldn’t be a good picture nor would it be as powerful as one of a person with no hair.  Just saying!

I look well, I still have all my hair – but you should see my insides!

insides
(you may also like this blog – click above)

I’m not playing ‘Cancer Olympics’ with this post as I wish all cancer patients, regardless of type, regardless of treatment regimes, the very best outcomes.

Thanks for reading

You may also enjoy these similar and related articles:

Things not to say to a cancer patient – click here

Shame on you! – click here

I look well but you should see my insides – click here

Things are not always how they seem – click here

Not every illness is visible – click here

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – 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

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!

 

Neuroendocrine Cancer – Exciting Times Ahead!  

exciting-times-ahead_edited

In the last 12-24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Scans, radionuclide therapies, combination therapies, somatostatin analogues, biological therapies, etc.  Some of the announcements are just expansions of existing therapies having been approved in new (but significant) regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly.  However, the pressure needs to stay on, all patients need access to the best diagnostics and treatments for them; and at the requisite time.  There’s even more in the pipeline and I’m hoping to continue to bring you news of new stuff as I have been doing for the last year.

Some of these new diagnostics and treatments will benefit eligible patients who are in diagnosis/newly diagnosed and also those living with the disease. As we’re now in our awareness month, let’s recap:

Scans

Many NET Patients will undergo a nuclear scan to confirm CT results and/or to detect further neuroendocrine activity.  Basically, a nuclear substance is mixed with a somatostatin analogue, injected into the patient who is then scanned using a 360-degree gamma camera.  As gamma cameras are designed to show up radioactive activity; and as Neuroendocrine Tumour cells will bind to the somatostatin analogue, it follows that the pictures provided will show where Neuroendocrine tumours are located.  Many people will have had an ‘Octreotide’ Scan (or more formally – Somatostatin Receptor Scintigraphy) which is still the gold standard in many areas. The latest generation of nuclear scans is based on the platform of the Gallium (Ga) 68 PET Scan. The principles of how the scan works is essentially as described above except that the more efficient radioactive/peptide mix and better scan definition, means a much better picture providing more detail (see example below). It’s important to note that positive somatostatin receptors are necessary for both scans to be effective. Europe and a few other areas have been using the Ga-68 PET scans for some time (although they are still limited in availability by sparse deployment). The latest excitement surrounding this new scan is because they are currently being rolled out in USA.  Read about the US FDA approval here.  You may hear this scan being labelled as ‘NETSPOT’ in USA but this is technically the name for the preparation radiopharmaceutical kit for the scan which includes a single-dose injection of the organic peptide and the radionuclide material. Take a look at a comparison of both scans here:

octreo-vs-g68
Octreoscan output vs Gallium 68 PET output

This slide from a recent NET Research Foundation conference confirms the power of more detailed scanning.

Peptide Receptor Radionuclide Therapy (PRRT)

Similar to above, this treatment has been in use in Europe and other places for some time but is also to be formally deployed in USA if, as is expected, the US FDA approval is positive at the end of this year (Read here).  In the most basic terms, this is a treatment whereby a peptide is mixed with a radionuclide and is drip fed over a number of treatments (normally up to 4 spaced out over a year). The concept of delivery of the ‘payload’ to the tumours is actually very similar to the preparation for a radionuclide scan as described above, the key difference is the dosage and length of exposure whilst the tumours are attacked. Once again, receptors are important. The NETTER series of trials showed good results and this is an excellent addition to the portfolio for those patients who are eligible for this treatment. Fingers crossed for the US FDA announcement due by the end of this year.  Also fingers crossed that PRRT returns to the NHS England & Wales portfolio of available treatments next year.  The Carcinoid Cancer Foundation has an excellent summary of PRRT here.

PRRT and Chemo Combo

Whilst on this subject, I also want to highlight the innovative use of combo therapies in Australia where they are combining PRRT and Chemo (PRCRT).  I blogged about this here:

PRRT CAPTEM

Somatostatin Analogues and their Delivery Systems

Somatostatin analogues are a mainstay treatment for many NET Patients.  These drugs target NET cell receptors which has the effect of inhibiting release of certain hormones which are responsible for some of the ‘syndromic’ effects of the disease.  Again, receptors are important for the efficacy of this treatment.  You can read the ‘geeky’ stuff on how they work here.  These drugs mainly comprise Octreotide (provided by Novartis) and Lanreotide (provided by Ipsen). The latter has been around in Europe for 10 years and was introduced to North America earlier this year.  Octreotide has been around for much longer, almost 17 years.  When you consider these peptides have also been used to support nuclear scans that can detect the presence of tumours; and that studies have shown they also have an anti-tumour effect, they really are an important treatment for many NET Patients.  I’ve blogged about new somatostatin analogues in the pipeline and you can read this here.  This blog also contains information about new delivery systems including the use of oral capsules and nasal sprays (…….. very early days though).

Treatment for Carcinoid Syndrome

telotristat-etiprate-clinical-trial-serotonin-as-a-key-driver-of-carcinoid-syndrome

For maintenance and quality of life, the release of a Telotristat Ethyl for Carcinoid Syndrome is an exciting development as is the first new treatment for Carcinoid Syndrome in 17 years.  This is a drug which is taken orally and inhibits the secretion of serotonin which causes some of the symptoms of the syndrome including diarrhea.  It must be emphasised it’s only for treating diarrhea caused by syndrome and might not be effective for diarrhea caused by other factors including surgery.  Read about how it works and its target patient group in my blog here.

Oncolytic Virus

oncolytic

The announcement of a clinical trial for the Oncolytic Virus (an Immunotherapy treatment) specifically for Neuroendocrine Tumours is also very exciting and offers a lot of hope. Click the photo for the last progress update.  

Everolimus (Afinitor)

013490_PNETUS_iPad_pg2v2

Earlier this year, AFINITOR became the first treatment approved for progressive, non-functional NETs of lung origin, and one of very few options available for progressive, non-functional GI NET, representing a shift in the treatment paradigm for these cancers.  It’s been around for some time in trials (the RADIANT series) and is also used to treat breast and kidney cancer.  It’s manufactured by Novartis (of Octreotide fame).  It has some varying side effects but these appear to be tolerable for most and as with any cancer drug, they need to weighed against the benefits they bring.

In technical terms, AFINITOR is a type of drug known as an ‘mTOR’ inhibitor (it’s not a chemo as frequently stated on NET patient forums).  Taken in tablet form, it works by blocking the mTOR protein. In doing so, AFINITOR helps to slow blood vessels from feeding oxygen and nutrients to the tumour.

Check out Novartis Afinitor website for more detailed information.  There’s an excellent update about AFINITOR rom NET expert Dr James Yao here.  The US FDA approval can be found here.

Summary

………. and relax!   Wow, I’ve surprised myself by collating and revising the last 12-24 months.  Dr James Yao also agrees – check out his upbeat message in the attached 2 page summary.  You may also like another upbeat message from Dr Jonathan Strosberg by clicking here.

Neuroendocrine Cancer – who’d have thought it?  ….. a bit of a dark horse.

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!

community_titled_transparent_2013-10-22

 

Living with NETs – a patients included award winning site

livingwithnets ronny story

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

eye for pharma

I’m also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018.

eyeforpharma ronny and isabelle

I’m quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site but because I sincerely believe it has the potential to be a fantastic facility for anyone interested in NETs, whether they be a patient, a carer, a health worker or anyone who wants to find out more.  And it’s not just learning about NETs, it’s so much more than that.  It’s also international and they are rolling out language by language over time (as at 13 Mar 2018, it’s available in English, German and Portuguese).

living with nets home

me and paul allen
Working with Kanga and Ipsen to design the site

Those who know me best will know that I fervently believe that patient experience and patient stories are the best tools we have for awareness and this site is strong in this element. Check out my series of Living with NETs videos available on the site – click here

Doctors might be the experts in your condition

Do you know what?  I’m sensing a change in thinking, I’m sensing that more and more people and their organisations are starting to come to the conclusion that patients have a part to play in all sorts of medical areas.  On the subject of Doctors, I’m of the solid opinion that we should be working more in partnership with our Doctors whether they know about NETs or not.  There doesn’t seem to be any point in beating them up because they don’t know enough about NETs.  Let’s help educate them instead!

living with nets patient stories

 patient is the most underused person in healthcare

Check out the site 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

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!

patients included

 

Let’s talk about living with NETs

being_there_front
Graphic courtesy of Ellie McDowell

There’s a frequently asked question on certain forums along the lines of how will I die of my Neuroendocrine Cancer?. Personally, I find it slightly unsettling, although I can understand why certain people might ask. I accept it as a question but I believe there are times and places for it and that a public forum is not the place to have it. The vast majority of people do not go to a forum to find out how they might die.  I can see a list of search terms for hits on my blog site (I don’t know who searched just what was searched). Would you believe this also appears from time to time?  I just hope they found this post!

I don’t tend to dabble in death – it’s just quite difficult to talk about it in a blog which is part designed to be positive and offer hope. So why am I talking about death inside this positive blog? Well, apart from thinking the thread mentioned above might scare readers who are already frightened by their diagnosis, perhaps quite recent, and do not want the answer to this question, I also think it might be perceived as a bit ‘glass half empty’. Both of these things are not good, thus why I believe the question should be between the person wanting to know and a specialist.

I also believe the “how will I die of Neuroendocrine Cancer” question is a really big assumption about the cause of death. Why? There’s an increasing chance a person with cancer today will die of something else. For example, in UK today, more than one in three (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%). This means the number of people who get cancer but die from another cause has doubled over the past 20 years. The cancer story is changing and a quick bit of research confirms it’s changing on a worldwide basis.

On a similar subject, for those looking online for NETs prognostic data, I offer the following advice:

  1. Be careful surfing the internet, some sites have NETs prognostic data from the ark.
  2. Even if you find the very latest data, interpretation is difficult due to the heterogeneity of NETs, different stages and grades, comorbidities, age and no doubt many other factors. Please also note the ‘very latest’ data is probably a few years old.
  3. It’s a difficult question even for a specialist.
  4. I’ve lost count of the number of people who have told their story about being told a period of time from their specialist (including use of the word ‘terminal’) and they are still here a significant period after, in some cases 10 x what their specialist said.
  5. AND DEFINITELY Check out the comments on this Facebook post – here (over 400 people like this post so far – so press that button!)
  6. Learn how to conquer your fear – click here

Here’s a much better question people should be asking ……How do I live with NETs?”

Fear won’t stop you dying but it might just stop you living

Thanks for reading

Ronny – diagnosed 2010 and still a newbie

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

Carcinoid – What’s in a name?


The Other C word

A quick primer on the word ‘CARCINOID‘.  It originates from the term ‘Carcinoma-like’.  ‘CARCIN’ is a truncation of Carcinoma (by definition cancerous or malignant tumour). ‘OID’ is a suffix meaning ‘resembling’ or ‘like’.  This infers that Carcinoid cannot be a truly malignant tumour – thus the confusion (….. and anger!). The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour.  That is dangerous thinking which could end up killing people.

There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed out by the World Health Organisation (WHO) in 2010 subsequently updated by WHO 2017.  The correct term for all types is actually Neuroendocrine Neoplasm (NEN) which is an umbralla term for all well differentiated tumours (NETs) and poorly differentiated carcinomas (NEC).  I’ll use NET going forward as that is where the confusion lies.

However, ‘Carcinoid’ seems to prevail in many parts of social media, advocate organisations, patients, even doctors are out of date. As a blogger and social media geek, I still use it as it’s a popular search phrase (although I’m always careful with context and in the correct ‘scenario’).  However and unfortunately, some still use it as a synonym for all NETs which is clearly incorrect. So called Carcinoid was ever only one type of NET albeit covering more than one location. I’m therefore baffled by the continued and frequent use of phrases such as “Carcinoid and Neuroendocrine Tumours” which misleadingly infers they are different cancers. Not helpful.

To prevent confusion, the use of the term NETs frequently needs to be expanded to distinguish between the different types. However, there does not appear to be any agreement on the naming conventions and I suspect this is probably one of the reasons why many people (including NET Specialists and advocate organisations) continue to use the term Carcinoid. I’ve seen sporadic use of the term SINET (small intestinal NET) and SB NET (small bowel NET) and we already have pNET (notice the syntax difference …..) and more recently I’ve seen ‘PanNET’.  I believe use of the anatomy has potential as a way forward but we need consistency.  Check out my article below entitled Carcinoid vs Neuroendocrine for advice on the correct terminology to use.

The primary NET is really important for context and understanding, thus why many patient advocate organsiation and cancer sites will still classify and list ‘Carcinoid’ as a single NET type rather than the long list of anatomical locations which can no longer be grouped under the heading of the Carcinoid type.  There are also many other factors involved and no solution seems to be perfect up to this point.  As for syndromes, there are several. So patients confused by the ‘instruction’ on the use of ‘Carcinoid’ will just say “I have the syndrome”. Just which one are they talking about? We also need to consider Carcinoid Heart Disease and Carcinoid Crisis and I have excellent suggestions for renaming both.

Another term I regularly see is ‘Noid’ – a truncation of Carcinoid.  Whilst I suspect that might have been popular and convenient 20 years ago, clearly it is not helpful when you consider the issues above.  Personally speaking, I find myself annoyed by being described as a Noid! Particularly when the ‘oid‘ part is what is causing the angst described above.  And while we’re at it, I’m also annoyed by being described as a zebra, that is another thing holding up our 21st century awareness campaigns.  Let’s move out of the 1980s please!

Some might say all of the above is just semantics and it’s nothing to get too excited about.  However, I believe we need more coordinated awareness and more coordinated clout for Neuroendocrine disease.  We should at least be consistent with the nomenclature messages (amongst other things).

You’ll find updated thinking in my other post “Carcinoid vs Neuroendocrine”

Fortunately the big NET specialist organisations are slowly getting rid of the word ‘Carcinoid’ and this is long overdue.  It will take a while and patients can set the example for the doctors and medical writers.

carcinoid falling out of favor