Neuroendocrine Cancer Clinical Trial – Lutetium-177 OPS-201 (Satoreotide)

ops 201

What is Lutetium-177 OPS-201?

This is a ‘next generation’ Peptide receptor radionuclide therapy (PRRT) or more specifically the radiopharmaceutical that binds to both activated and unactivated somatostatin receptors which are upregulated on these tumours. There is far higher binding via this mechanism than standard octreotate. The technical name of the radiopharmaceutical is Satoreotide tetraxetan lutetium-177 (author’s note, I’m guessing but it could be a variant of Lanreotide).  It was once named JR11.

What’s the difference to the current approved therapy? 

Conventional PRRT (e.g. Lutathera, Lu177 Dotatate) is based on a somatostatin receptor ‘agonist’ approach, whereas 177Lu Ops 201 Satoreotide is a receptor ‘Antagonist’.  The differences are quite technical but in the most layman terms , the antagonist has the capability of attaching (binding) to more receptors, including those in a ‘resting’ or ‘inactive’ state, spends more time on the tumor than agonist based therapies. The result is a higher number of receptor binding sites and greater tumor uptake.  In addition it is said to show an improved tumor-to-kidney dose ratio compared to 177Lu-DOTA-TATE.

This would also be reflected in the theranostic use of the drug in Ga68 imaging (i.e. Ga68 Satoreotide).

Useful reading:

This presentation from Theranostics Australia

The Clinical Trial

The clinical trial is named “Study to Evaluate the Safety and Preliminary Efficacy of 177Lu-OPSC001 in NETs”.  The protocol involves 3 cycles 8 weeks apart of intravenous Lu-177 OPS-201. All patients will have baseline Ga-68 octreotate imaging performed.

The treatment is available for all NET patients with a histologically confirmed diagnosis of:

  • unresectable GEP NET (Grade I and Grade II according to WHO classification (2010, Annex 01), functioning and non-functioning).
  • unresectable “typical lung NET” or “atypical lung NET” are acceptable (with the exception of Large Cell Bronchial Neuroendocrine Neoplasms and Small Cell Lung Cancers).
  • malignant, unresectable pheochromocytoma or paraganglioma

Patients who have previously had Lu-177 octreotate (e.g. Lutathera) are not eligible. Patients may have had any other treatment including chemotherapy, radiotherapy or Somatostatin Analogues (e.g. octreotide, landreotide).

There are other inclusion and exclusion criteria to be found within the clinical trial document.  The trial is due to compete in May 2022.

Where is the Trial based?  

At the time of writing and according to the Clinical Trial document, Australia (Melbourne and Perth),  Austria (Vienna), Denmark (Aarhus), Switzerland (Basel), UK (Royal Free London).  Two sites are also listed in France (Nantes and Toulouse) but trial document currently marked as not yet recruiting.

What about USA?

I also found an additional trial based in Memorial Sloan Kettering New York designed to take a theranostic approach by using  Satoreotide (JR11) for the pre-treatment imaging, e.g. Ga68 satoreotide (JR11) and the 177Lu version for treatment. The clinical trial document indicates this trial is active but NOT RECRUITING and is entitled “Theranostics of Radiolabeled Somatostatin Antagonists 68Ga-DOTA-JR11 and 177Lu-DOTA-JR11 in Patients With Neuroendocrine Tumors”

Thanks for reading

You may also find these PRRT related articles useful:

PRRT Overview plus locations 

Phase 1 trial of Targeted Alpha-emitter Therapy (TAT) –  212 Pb-AR-RMX

COMPETE trial 177Lu Edotreotide-Solucin

PRRT and Chemo Trial

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!

patients included

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RonnyAllan.NET – Community Newsletter Covering November 2018

Newsletter Nov 18
Summary for November 2018

NET News

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

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

Every day is NET Cancer Day

 

45805256_1992143267537828_1584897212020686848_n
Join my twitter army for a new paradigm in NETs awareness

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

45610294_1983128528439302_5378612202188046336_n

3. Personal NET News

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

fibrosis an unsolved mystery

Looking for Advice?

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

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

Blog Site Activity in November

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

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

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

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

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

Other Activity

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

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

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


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

Ronny Allan’s Private Facebook Group

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

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

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

New Audiences for NET Cancer

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

Engagements and Invites

  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • I’m working on a video shoot next week for a Pharma company who are looking at how cancer patients live from day to day.  More info later when I am at liberty to tell you.
  • I’m working on an association with a Pharma company to help with patient portals.  Early days.
  • I’m working on an association with a healthcare company to help with their marketing.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice.
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 244 times on my personal account which led to over 117,000 views of my tweets. I was mentioned 203 times by other tweeters, 2331 people looked at my profile (where it mentions NETs) and I gained 64 new followers. My weekly ‘reach’ is consistently between 400,000 and 800,000, heading for 1 million soon. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
  • proud to be

WANT TO JOIN MY TWITTER ARMY?  Just ask. 

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

Social Media and Stats

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

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

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

Summary

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

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

Thanks for reading

Please Share this post

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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


Neuroendocrine Cancer – is normally slow growing BUT …..



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


BUT

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

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

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

No thanks for making a right mess inside my body!

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

No thanks for generating fibrosis throughout my mesentery and retroperitoneum!

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

fibrosis an unsolved mystery

No thanks for screwing up some of my hormones

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


No thanks for the ongoing symptoms and side effects

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

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

Surveillance and treatment for life SUCKS!

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

No thanks for the weight loss

As if I needed it

No thanks for the hypothyroidism

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

No thanks for increasing my diabetes risk

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

No thanks for making me retire early

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

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

Neuroendocrine Cancer is a very expensive disease to treat.

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

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


Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Sign up for my twitter newsletter

Check out my Podcast Interview (click and press play)

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


wego-blog-2018-winner


patients included

PLEASE SHARE THIS POST

Pancreatic Cancer vs Neuroendocrine Tumors of the Pancreas

pancreatic vs neuroendocrine

I campaign hard for Neuroendocrine Cancer awareness including continually pointing out that a Neuroendocrine Cancer with a pancreatic primary is NOT Pancreatic Cancer as is often quoted in the press.  The two main reasons I take up these campaigns are as follows:

1.  They are totally different cancers despite an anatomical relationship.  Although they share some similar presentation, they have different signs, different treatments and vastly different prognostic outcomes.  What that means is that anyone who is looking for useful information on either needs to be very careful on interpretation, they could end up with very bad advice and in some situations, become more concerned than they should be (particularly with the prognostics).  See more below. 

2.  These two different cancer types have different awareness organisations, patient support groups and patient leaders/advocates. In most cases, vastly different awareness messages. Both of these organisations and advocates need all the help they can get, they need all the resources and funding they can get. 

Both Pancreatic Cancer and Neuroendocrine Cancer are diseases that need maximum publicity, both disease types have their own unique situations, thus why the awareness messages can be so vastly different.  It’s really important, therefore, that publicity surrounding famous patients be attributed to the correct cancer type in order that the advocate organisations and supporters can gain maximum benefit to forward their causes.  Unfortunately, thanks to doctors and media, this very often doesn’t work out in favour of Neuroendocrine Cancer due to the Human Anatomy of Neuroendocrine Cancer (this problem actually goes beyond the pancreas).

Where the press and doctors regularly get it wrong

Two famous people in particular, one in 2011 and the other this year, are regularly reported in the press as having died of Pancreatic Cancer.

Steve Jobs.  One of the most famous technical innovators of his time and creator of the most valuable company in the world. He had a Neuroendocrine Cancer with a pancreatic primary.  Read his story here.

steve-jobs-55-to-2011

Aretha Franklin. One of the most famous soul singers of her time.  She had a Neuroendocrine Cancer with a pancreatic primary. Read her story here.

rip-Aretha-Franklin-1

To summarise, Neuroendocrine Cancer is not a “type” of another cancer.

What are the differences? 

For me, one of the two main differences are the cell type. When people talk about Pancreatic Cancer, they really mean something known as “Pancreatic Adenocarcinoma”.  It starts in the exocrine cells, which produce enzymes to support digestion.  Neuroendocrine Tumors start in the endocrine cells which produce hormones.

For me, the other big difference is prognostics.  Unfortunately, it is statistically proven that most people with Pancreatic Adenocarcinoma will die, whereas most people with Neuroendocrine Tumors with a pancreatic primary will live.

For a more detailed comparison, see this excellent article from NET Research Foundation.

iStock-536892277-768x891

 

Pancreatic Cancer – Why I support their campaigns

Personally speaking, as a healthcare advocate online, I do support many cancer awareness campaigns, I think this is important to get similar help coming the other way (this frequently works for me).  However, I very much suspect, other than Neuroendocrine Cancer, my biggest support area online is for Pancreatic Cancer.  I’m drawn by their excellent campaigns where they focus on key messages of prognostics for what is essentially a silent disease (in many ways the same issue with Neuroendocrine Cancer) and they make these more compelling by focusing on people rather than gimmicks. The prognostics can be upsetting reading as they are quite shocking figures which have not changed much in the past 40 years, a key sign that more must be done for this awful disease.   I frequently share this symptom graphic below because it might save a life and I ask that you do too.

pan can symptoms

 

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Sign up for my twitter newsletter

Check out my Podcast Interview (click and press play)

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

wego-blog-2018-winner


patients included

 PLEASE SHARE THIS POST

 

RonnyAllan.NET – Community Newsletter Covering October 2018


Summary for October 2018

NET News

Several headlines covering the past month:

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

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

the best kind of story – a 2 legged one

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

Personal NET News

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

Looking for Advice?

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

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

Blog Site Activity in September

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

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

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

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

Other Activity

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

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

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


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

Ronny Allan’s Private Facebook Group

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

New Audiences for NET Cancer

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

Engagements and Invites

  • I spoke at the Eye for Pharma event in London alongside an important Pharma NET contact. See above.
  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice.
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 190 times on my personal account which led to over 117,000 views of my tweets. I was mentioned 134 times by other tweeters, 1524 people looked at my profile (where it mentions NETs) and I gained 50 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.

WANT TO JOIN MY TWITTER ARMY?  Just ask. 

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

Social Media and Stats

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

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

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

Summary

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

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

Thanks for reading

Please Share this post

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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


Neuroendocrine Cancer Syndromes: A Witch’s Brew

witches brew

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

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

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

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

serotonin

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

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

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

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

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

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

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

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

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

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

 

 

 

How to Talk to a Cancer Patient Without Being a Complete Twit

I enjoyed reading “8 rules on how to talk to a cancer patient” because I think much of it is written with ‘tongue in cheek’.  Great title!

In UK we might even spell the word ‘twit’ slightly differently (UK people will get it!). Some of the rules are directed at doctors and I’m sure some doctors will laugh (if you’re a doctor and you didn’t laugh, sorry). I think one or two are a bit harsh and could potentially backfire and at least one I partly disagree with.  Personally I try to balance my reactions to not come over as a ‘pity party’ and something which is genuinely offensive or upsetting to me as a cancer patient.  I appreciate understanding and empathy, perhaps sympathy, but I certainly don’t want pity.

I’ve added rule number 9 which is a true story I picked up in my own community which I found absolutely unacceptable and I certainly did not laugh.  Thanks to ‘Patient A’ for the quote.

Read the 8 rules here:

https://www.mcsweeneys.net/articles/how-to-talk-to-a-cancer-patient-without-being-a-complete-twit

You may also enjoy this article which contains 16 ‘red flags’ that might mean it’s time to find a new doctor.  Easier in some countries than others and I suspect we have all encountered at least one of them.  I don’t think we should be changing doctors too often and we shouldn’t be changing just because of one of these ‘red flags’ (although the example above is pretty offensive).

16 ‘Red Flags’ That Might Mean It’s Time to Find a New Doctor

Another good one is an actor based video which discusses about the things people sometimes say (often clumsily) to patients that often don’t hit the right chord – check out my article “Things not to say to a someone with cancer“.

And of course we all look so well as Neuroendocrine Cancer patients – but you should see our insides.
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!

Living with Cancer – Worrier or Warrior?


WORRIER OR WARRIOR (2)

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

Warriors

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

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

poker face
Poker Face or Cancer Card

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

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

Worriers

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

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

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

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

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

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

Summary

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

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

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

Take care all

 

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

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

Please Share this post

 

 

Neuroendocrine Cancer – on your bike!

20181007_160547.jpg

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

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

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

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

I’m working with my doctors on the issue.

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

Exercise – it’s a free prescription.

Thanks for reading

Ronny

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!

Please Share this post

 

 

 

RonnyAllan.NET – Community Newsletter Covering September 2018

Newsletter Sep 18

Summary for September 2018

NET News

Several headlines covering the past month:

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

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

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

Personal NET News

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

Looking for Advice?

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

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

Blog Site Activity in September

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

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

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

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

Other Activity

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

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

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

Ronny Allan’s Private Facebook Group

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

New Audiences for NET Cancer

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

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details but I can tell you now I will be speaking at the Eye for Pharma event in London alongside an important Pharma NET contact.
  • I just received an invite to help build an educational tool for NETs. More to follow when I am at liberty to tell you.
  • In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation. That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support and it meets with my association criteria.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Cure Magazine. I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now. Cure Magazine has a readership of 1 million. Click here to read more. In October, I was featured in Cure Magazine twice. I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 220 times on my personal account which led to over 140,000 views of my tweets. I was mentioned 145 times by other tweeters, 1648 people looked at my profile and I gained 74 new followers. My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter. Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email to join over 600 other subscribers.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here. In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader. WEGO is a fantastic organisation! They recently listed me as one of the top 5 bloggers to watch in 2018. This is great awareness and good feedback for my own efforts. Read more here. I have made the finals in the last 3 years and I was their winner in the 2018 Best in Show: Blog announced on 26 Sep 2018. Check out my WEGO Health profile here.
wego blog 2018 winner
Click the picture to watch the video of the live announcements

Social Media and Stats

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

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

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

Summary

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

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

Thanks for reading

Please Share this post

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

 

Don’t worry, it’s benign!


One of the most controversial aspects of 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). This post will not cover Neuroendocrine Carcinoma which by definition is malignant.

Any definition of the word ‘tumour’ will confirm it can either be benign or malignant. However, and while I’m sure there are benign NETs, the key statement to explain any slow growing or indolent NET is that they all have malignant potential – thus why surveillance and follow up is really important. This is the key factor in the changes found in the 2010 Digestive System World Health Organisation (WHO) classification system from the previous ‘flaky’ version. This reinforcement of the malignant potential of all NETs was duplicated in the recent 2017 Endocrine System equivalent, which is now proposed as a classification scheme for all NETs (see below).

Of course we are not helped by the continued use of the term Carcinoid which decodes to ‘Cancer Like’ – that is potentially regressing the work of those specialists who are trying to undo the last 100 years of complacency in the medical world (and not really the type of awareness we need). The word is gradually being erased from NET nomenclature and the recent 2018 proposal by the International Agency for Research on Cancer (IARC) and WHO NET expert consensus panel to ditch it from the remaining versions of out of date WHO classifications (e.g. Pulmonary/Lung, Pituitary, Head & Neck, Genito-urinary, Adrenal and Paraganglia, Skin), is the final nail in the coffin for Carcinoid. RIP Carcinoid. This also supports our awareness issues with the media reporting the wrong cancer types based on anatomy of the primary tumour. Dear Doctors, Patient Advocates and Patients ….. please stop using the word!

I have lost count of the stories from Neuroendocrine Cancer patients who have been told their tumour was benign but then returned with incurable and metastatic cancer sometime downstream. Clearly there are doctors who do not understand NETs and/or are not aware of the changes in WHO classification schemes since 2010. Sure, some will prove to be ‘benign’ in nature and may not cause many issues but any Ki-67 below 3% is a formal grade of Neuroendocrine Neoplasm. I accept that it’s currently difficult to work out which cases will turn more aggressive and when, thus why surveillance and follow up are really important and also why patients should be seeing doctors who understand NETs. Worth also noting that many slow growing and indolent tumors can still often produce troublesome NET syndromes.

I’ve even heard one patient story where it was claimed a doctor called a metastatic NET case benign! Any definition of ‘benign’ will include the statement that they do not spread to other parts of the body. The NET Patient world is full of slow growing Grade 1 Stage 4 patients – by definition, they’re all malignant.

Read up on more detail in my article ‘benign vs malignant’. Also read my ‘Carcinoid vs Neuroendocrine’ discussion as this is inextricably linked.

If a Doctor says you have NETs and not to worry because it’s benign, ask questions.

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!

Diagnosing the Undiagnosed


Neuroendocrine Cancer is one of a number of “difficult to diagnose” conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In some cases, many people don’t feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It’s a very sneaky type of cancer and if left too long it can be life threatening – CLICK HERE to find out why.

The road to a diagnosis of Neuroendocrine Cancer is often not straight or easy to navigate. It’s not only a sneaky type of cancer but it’s also very complex. It’s a heterogeneous group of malignancies with a varied and confusing histology and nomenclature to match. As I said above, many people are asymptomatic for years whilst the tumor grows and some might say that it’s somewhat ‘lucky’ to have symptoms to help aid a diagnosis. Many find that a lack of knowledge of Neuroendocrine Cancer in primary care, doesn’t always produce results. Common misdiagnoses include (but not limited to), Irritable Bowel Syndrome (IBS) and other common digestive diseases, menopause, appendicitis, hypertension, gastritis, asthma. Neuroendocrine Cancer is much more likely to be diagnosed at secondary care if a referral for ‘something’ can be achieved.

……..cue internet searches (Dr Google)

I think the rise and the power of the internet and rise of social media applications is very much helping generate awareness and knowledge of Neuroendocrine Cancer and those looking for a diagnosis may find help in this way. I suspect this instant access to information has played its part in the diagnostic improvements I mentioned above. Take my own efforts for example, I’m a wee Scottish guy with a computer and I’m already accelerating towards a million blog views – there’s clearly a market for what I produce. In terms of those looking for a diagnosis, if only one gets an earlier diagnosis due to my site, I’ll be happy.

Unfortunately, the internet can often be a minefield and in many cases, can lead to quite unnecessary worry for those looking for a solution.

Incoming Questions

I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, tumour markers, hormone markers. And I always warn them that statistically, they are more likely to have a common condition than the less common Neuroendocrine Cancer.

Many have already had multiple doctor’s appointments and tests. If they have not yet had a scan, I encourage them to try to get one ‘by hook or by crook’. Despite what you read on patient forums and surveys, the vast majority of Neuroendocrine diagnoses will be triggered by a conventional imaging such as CT and/or MRI. If you can see it, you can detect it.

When I first chat with the ‘undiagnosed’, I find many of them are fairly knowledgeable about Neuroendocrine Cancer and other health conditions, again confirming the power of the internet and the savvy ‘internet patient’. This is fine if you look in the right places of course – for certain things there are more wrong places on the internet than right ones.

If I have time, I’m happy to chat with these people, some are very frustrated – in fact some are so frustrated that they just want a diagnosis of something even if that something is really bad. However, what do you say to someone who is utterly convinced they have Neuroendocrine Cancer but CT/MRI/Octreoscan/Ga68 PET are all clear, Chromogranin A and 5HIAA are in range but they still say they have diarrhea with its potential for literally thousands of differential diagnoses. It’s a tough gig.

Example:

My scan came back normal. That should be good news. But, if there is no tumor, how can I be suffering from all the symptoms of carcinoid syndrome? Is that diagnosis wrong? Are the urine and blood test results wrong? I’m awaiting a MRI scan to take another look to see if the doctor can find anything. I don’t know what they’ll find. I don’t want them to find anything. But I’m afraid of what will happen if they don’t.

Anon

Patient Forums

I always let the undiagnosed know that Neuroendocrine Cancer patients are some of the most friendliest and helpful people you can meet, they will treat you as one of their own. There will be a number of diagnosed people online who have gone through what the undiagnosed are going through, so they will both sympathise and emphasise. But … this can often have the adverse effect of pushing them into believing they must have Neuroendocrine Cancer. This makes for interesting discussions given the number of people who automatically assume that ‘flushing’ or ‘diarrhea’ (as described by the undiagnosed) must be Neuroendocrine Cancer without any reference to the many differential diagnoses and the context of what that actually means in Neuroendocrine Cancer terms.

10 Questions to ask your doctor/specialist for those Diagnosed with Neuroendocrine Cancer (and where to find a specialist)

I once wrote an article for DIAGNOSED NET Patients suggesting 10 Questions to ask their doctor. So I wanted to take a step back in context, using the knowledge I now have, and put myself in the shoes of someone who thinks they may have Neuroendocrine Cancer but is not yet diagnosed.

Key questions to ask your doctor/specialist for those trying to confirm or discount Neuroendocrine Cancer

Dear undiagnosed people. I totally understand your fear. There’s nothing worse than being ill and not knowing what illness you have. I’ve therefore compiled a list of 3 key questions for you to ask – think of it as a tick list of things to ask your doctor to do or check . I have linked several background articles for you to prepare your case. However, I cannot promise your doctor will agree or take any action, in fact some might be annoyed about the lack of trust. However, doing your homework really helps, including diaries and other evidence.

I also wouldn’t say that a negative to all the questions will mean you definitely do not have Neuroendocrine Cancer but at least these questions might provide your doctor and yourself with some food for thought, perhaps leading to the diagnosis of ‘something’. The questions below assume that routine blood tests have been done, including Full Blood Count, Liver, Renal, Bone, Glucose.

Questions for the UNDIAGNOSED to ask their treating physician

“I think I might have a type of cancer known as Neuroendocrine Cancer or Neuroendocrine Tumours (NET) because <<< insert your own story>>>. Would you please consider the following tests and checks:”

1. Chromogranin A (CgA) is a marker which is quite sensitive for Neuroendocrine Tumours, essentially measuring tumour bulk potentially indicating the presence of Neuroendocrine Tumours. There can be other reasons for an elevated CgA figure, including the patient’s use of proton pump inhibitors (PPI) (see the article for an alterative test where this is the case). Read more here – Neuroendocrine Cancer – Tumour and Hormone Marker tests.

2. 5HIAA is a hormone marker for the most common type of NET, particularly if the patient is presenting with flushing and diarrhea. Many NETs have associated syndromes and hormone markers can be a guide to help with diagnostics. Read more about 5HIAA and other hormone markers for different types of NET and different syndromes here Neuroendocrine Cancer – Tumour and Hormone Marker tests.

3. Scans. Most NETs can be seen on a CT scan although liver metastasis can often show more clearly on an MRI. There are also nuclear scan options to confirm conventional imaging findings. Some NETs may be accessible via endoscopy and ultrasounds can also give hints for further investigation. In some cases, nuclear scans will find things that conventional imaging cannot because radionuclides can normally pick up oversecreting tumours. Read more in my article “If you can see it, you can detect it”.

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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

patients included

RonnyAllan.NET – Community Newsletter Covering August 2018

RIP Aretha Franklin – Neuroendocrine Cancer

Summary for August 2018

NET News

Several headlines covering the past month:

1. The death of Aretha Franklin was a shock to her many fans around the world, including myself. I had no idea she was a Neuroendocrine Cancer patient. However, it would appear her death is being assigned as ‘Pancreatic Cancer’ mainly due to a rather clumsy statement from her physician. Despite the fact that her death certificate specifically confirms Neuroendocrine Cancer, we will be fighting a hard battle for years to come. The same thing happened with Steve Jobs, although I suspect we have now won that battle despite frequently news articles saying Pancreatic Cancer. Read about Aretha Franklin here and check out the link to her death certificate – I believe this is the most concrete evidence of her type of cancer. Click here for Aretha.

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

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

Personal News

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

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

Blog Site Activity in August

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

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

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

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

Other Activity

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

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

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

Ronny Allan’s Group

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

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

New Audiences for NET Cancer

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

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details but I can tell you now I will be speaking at the Eye for Pharma event in London alongside an important Pharma NET contact.
  • In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation. That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Some of you will remember the invite to Berlin for a ‘Patients included’ event, This was not a NET Cancer event but I was invited due to my wider healthcare advocate work. That was a tough gig but great experience. There’s a summary file here and I have been invited back next year and my involvement is still being worked out.

Article features

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

Social Media and Stats

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

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

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

Summary

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

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

Thanks for reading

Please Share this post

Ronny

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

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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

64Cu-DOTATATE – a potential expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer?

Curium and RadioMedix Inc. announce an exclusive agreement to develop and commercialize 64Cu-Dotatate, an investigational positron emission tomography (PET) diagnostic agent for patients with Neuroendocrine Tumors (NETs). RadioMedix is currently engaged in Phase III clinical trials of the agent and expects to file a New Drug Application with the Food and Drug Administration in 2019. This partnership builds on the initial development work conducted by RadioMedix and will benefit from Curium’s regulatory, manufacturing, distribution, and commercial expertise. The radionuclide is not new, it’s been in use for some time, mainly in Denmark.

64Cu is a PET isotope that can be produced at a central location in quantities to meet the commercial needs of hospitals and imaging centers without the supply limitations of nuclear generator-based PET isotopes,” said Ebrahim Delpassand, MD, CEO of RadioMedix. “Once approved, 64Cu-Dotatate will be available to patients in medical centers with PET capability across the country. This will address the shortage or lack of availability of somatostatin analogue PET agents that we are currently experiencing in many parts of the U.S.”

Ga68 PET Shortages explained

This statement is in relation to the current shortage of Ga68 PET radionuclide. For those not aware, the Society of Nuclear Medicine and Molecular Imaging (SNMMI) has written a letter to the FDA about ongoing shortages of generators that produce gallium-68 (Ga-68), a radioisotope used regularly in medical imaging. The letter—available here.

The letter explains that Ga-68 is currently used to produce NETSPOT from Advanced Accelerator Applications (a Novartis company), which was approved in June 2016 to help treat neuroendocrine tumors (NETs) in adult and pediatric patients using PET. NETSPOT, however, is only approved using specific generators. And those generators are only approved for either 400 uses or one year, whichever comes first. This has led to shortages throughout the United States.

SNMMI notes some possible remedies for this shortage. For instance, “a temporary exemption to the 400-elution limit would have a major impact on NETSPOT capacity for patients,” according to the letter. In addition, using a wider variety of generators to produce NETSPOT or using cyclotron-produced gallium chloride are two other methods that could improve production in a relatively short amount of time. “Further discussion with the manufacturers is necessary,” the authors added.

Read more about Ga68 PET and its use in Neuroendocrine Cancer – click here. Worth also noting that RadioMedix is also involved in a number of NET related initiatives including:

1. Trials for a new type of PRRT called ‘Targeted Alpha-emitter Therapy (TAT) – I’ve written about this previously. Read my article here.
2. An exclusive distributor for the TM Isotopen Technologien München AG (ITM) PRRT product currently in trial. I wrote about this here.

How does 64Cu-Dotatate compare with Ga68 PET and Octreotide Scans?

To learn more about previous studies on 64Cu-Dotatate, here’s 2 articles published in the Journal of Nuclear Medicine which are a head to head comparison of 64Cu-Dotatate with Ga68 Dotatoc and with 111 Indium Octreotide (Octreoscan).

Head-to-Head Comparison of 64Cu-DOTATATE and 68Ga-DOTATOC PET/CT: A Prospective Study of 59 Patients with Neuroendocrine Tumors – http://jnm.snmjournals.org/content/58/3/451.full

PET/CT (left) and PET (right) scans of patient with intestinal NET and multiple metastases. More lesions are seen in intestinal region with 64Cu-DOTATATE than with 68Ga-DOTATOC.

Conclusion: 64Cu-DOTATATE has advantages over 68Ga-DOTATOC in the detection of lesions in NET patients. Although patient-based sensitivity was the same for 64Cu-DOTATATE and 68Ga-DOTATOC in this cohort, significantly more lesions were detected by 64Cu-DOTATATE. Furthermore, the shelf life of more than 24 h and the scanning window of at least 3 h make 64Cu-DOTATATE favorable and easy to use in the clinical setting.

64Cu-DOTATATE PET for Neuroendocrine Tumors: A Prospective Head-to-Head Comparison with 111In-DTPA-Octreotide in 112 Patients –http://jnm.snmjournals.org/content/56/6/847.full

Multiple small liver metastases (>10), peritoneal solitary tumor mass, and 3 lymph node metastases shown on 64Cu-DOTATATE PET/CT in patient with pancreatic NET. No foci were detected by 111In-DTPA-OC SPECT (Precedence scanner). All findings on PET were confirmed to be true-positive. (A) 111In-DTPA-OC planar images. (B) 64Cu-DOTATATE maximum-intensity-projection image with arrows pointing at liver and lymph node metastases. Insert is fused PET/CT of peritoneal solitary tumor mass. (C) Axial CT and SPECT of liver. (D) Axial CT and PET of liver revealing several small liver metastases.

Conclusion: With these results, we demonstrate that 64Cu-DOTATATE is far superior to 111In-DTPA-OC in diagnostic performance in NET patients. Therefore, we do not hesitate to recommend implementation of 64Cu-DOTATATE as a replacement for 111In-DTPA-OC.

Summary

The shortage of Ga68 PET radionuclide caused by limitations of the generators in use is unfortunate. Reading the SNMMI letter, I think progress can be made downstream. However, the introduction of a new scanning agent could be useful as long as the trials prove its safety and efficiently and is comparable to current tools. There is no news of any plans to extend this potential new radionuclide outside the US but I suspect that would change following an FDA approval.

If you can see it, you can detect it!

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

Please Share this post

I wish I had another cancer

I wish I had breast cancer

I’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, my friend Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that).

Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’.  Ironically, although some cancers are almost certainly worse than others (for example in prognostic terms), it seems like a race to the bottom as patients fight for the ‘top’ spot.  It works both ways as some people perceive they have had or are having a better cancer experience than others, and that can often lead to a sense of guilt, i.e. ‘your cancer is much worse than mine, I shouldn’t really complain too much’.

It can be normal to experience these emotions, and with such wide and varying cancer experiences, different personal circumstances, even (say) the worst stages and grades cannot always be used to justify the ‘gold medal’ position in this ironic version of cancer Olympics. Take my Neuroendocrine Cancer for example, I have the highest stage but an intermediate grade, so my sub type is not particularly aggressive in comparison with other cancers or even other sub-types of my own cancer. However,in many ways it’s a deceiving and silent disease and very often people are not diagnosed until a late stage where the disease becomes incurable. Prognostics for many sub-types are good but living with the disease has many consequences.  This sounds like a bad deal and for some it can be. But don’t tell me I have a ‘good’ cancer.  Neuroendocrine Cancer does have aggressive types with significantly different prognostic outcomes than the more common and less aggressive variants.

So let’s turn my personal cancer Olympics analogy round the other way.  Let’s say you have a very aggressive cancer with terrible and frightening prognostic statistics.  I would certainly not criticise anyone or accuse them of deliberately playing a cancer Olympics ‘game’ for suggesting they wished they had another cancer in this scenario.

I want to focus an example on Pancreatic Cancer, an awful cancer with awful prognostic outcomes. Using UK statistics, less than 7% of patients survive 5 years, it has the worst survival rate of all 22 common cancers. The headline and key awareness and campaigning message is that these prognostics have not changed much in 40 years.  There are similar statistics in many countries. Pancreatic Cancer organisations worldwide are therefore campaigning robustly for more resources and funding to tackle and improve these statistics through more research and clinical trials.  They are also doing what they can with their own prevention and early diagnosis campaigns with limited funding.  With this particular disease, given the survival statistics, awareness is vital and it can save lives, one of the reasons I regularly publish Pancreatic Cancer symptoms.

One of the most compelling, bold and disruptive (in the context of shaking things up) campaigns I’ve seen, is the ‘I wish I had another cancer’ campaign from a UK-based Pancreatic Cancer organisation. It certainly caused a storm, making it to billboards in many towns, London underground adverts, several national newspapers and  appearances on national TV.  One broadcaster named it the ‘Envy’ campaign.

i wish i had testicular cancer
RIP Andy Luck

Many supporters of the ‘other’ named cancers reacted as you would expect, with criticism and it came from many parts of the world. In UK, there were many complaints made but the UK Advertising Standards Authority rejected these and refused to ban the adverts.  Read some of the fallout by clicking here.  The UK-based Pancreatic Cancer organisation later issued a statement saying ‘no cancer advert that saves a single life can be accused of going too far‘. Two of the three patients in the controversial adverts have since died, in fact these tragic and heartbreaking events both came not long after the advertising campaign was launched.

I wish I had cervical cancer
Penny Lown

Kerry Harvey was always the face of this campaign although the other two messages are equally powerful. Kerry would have been 29 on 14th August 2018. RIP Kerry.  Read her diagnosis and treatment story by clicking here and here. Neuroendocrine Cancer. 

I wish I had breast cancerRIP Kerry Harvey

Clearly I would rather not be diagnosed with any cancer. But if I was to be brutally honest, I’m glad I wasn’t diagnosed with a more aggressive disease, otherwise I might not be here now enjoying life with my family.

You may also be interested in this article – Pancreatic Cancer vs Neuroendocrine Cancer with a pancreatic primary.  Click here to read.

Thanks for listening

Ronny

I’m also active on Facebook.  Like my page for even more news. Please also support my other site – 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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RonnyAllan.NET – Community Newsletter JULY 2018

Newsletter July 18

Summary for July

Personal News 

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

NET News

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

Blog Site Activity in July

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

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

G68 PET Scans – a game changer? 

My latest article following the results of my first Ga68 PET scan. I’m no longer a ‘boring’ stable patient.

  Neuroendocrine Cancer – Mesenteric and Retroperitoneal Fibrosis – an unsolved mystery?

a long-awaited article about something which has plagued me since diagnosis but has now had an impact on my potential treatment strategy.

  “What are you doing this afternoon”

Words which triggered my diagnosis.  I got a scan.

PRRT Update – patients please read and advise on new locations.  Contains the patient provided update on new locations for insurance funded PRRT in USA.

Lanreotide – 100 shots!

My 100th Lanreotide birthday!

Will you vote for Ronny Allan?

I need your votes to progress into the finals of the WEGO Health Awards.  Please see how you can help inside this article.

Neuroendocrine Cancer – tumour markers and hormone levels – did I miss any?
   177Lu-DOTA-EB-TATE – Long-lasting radionuclide therapy for advanced neuroendocrine tumors proves effective

news of a new PRRT trial

RonnyAllan.NET – Community Newsletter June 2018 – in case you missed it.

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

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

Other Activity

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

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

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

Ronny Allan’s Group


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

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

New Audiences for NET Cancer

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

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details.
  • In July, I continued a dialogue in a patient app development coordinated by NET Patient Foundation.  That said, I missed the meeting due to illness. I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here.
  • Some of you will remember the invite to Berlin for a ‘Patients included’ event,  This was not a NET Cancer event but I was invited due to my wider healthcare advocate work.  That was a tough gig but great experience.  There’s a summary file here and I have been invited back next year and my involvement is still being worked out.

Article features

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

Social Media and Stats

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

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

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

Summary

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

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

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

 

Neuroendocrine Cancer: Ga68 PET Scan – a game changer?

wp-image-991783422jpg.jpg
This slide from a recent NET Research Foundation conference confirms the power of more detailed scanning – it does look like 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!

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. It’s brought more light onto my thyroid issue and continues to indicate some issues above the diaphragm including what looks like a new issue around my left pectoral and lights up an existing issue in the clavicle lymph nodes (first pointed out via Octreotide scan in 2010).

It also formed part of an investigation into progression of my retroperitoneal fibrosis (initially diagnosed 2010 but potential growth spotted on recent surveillance CT). I may now need surgery to prevent kidney/bladder issues and/or radiation therapy to tackle the root cause (the latter is ruled out for now – Nov 2018)

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

The Ga68 PET Scan confirmed:

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

Confirmation and better understanding of the following:

  1. Thyroid lesion lighting up “intense uptake“. 2014 Biopsy inconclusive but NETs now highly suspected. I’m already diagnosed hypothyroidism, probably connected.
  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. 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 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.
  3. Report also highlights left subpectoral lymph nodes which is new.  It’s actually very close the SCF and axillary nodes mentioned above.  I’m hoping to get an ultrasound of these in January at my annual thyroid clinic.
  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 in the last week that I now fully understand why I had to have radical surgery 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).

I didn’t expect this particular problem – it was a bit of a shock. This is not a straightforward surgery.  My hormone markers have been normal for 7 years 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. There are actually recommended usages for the Ga68 PET scan here.  For example, it is not recommended for routine surveillance in place of CI.

In fact, the retroperitoneal fibrosis has appeared on every CT scan since diagnosis but the changes were highlighted on my most recent standalone CT and it triggered the Ga68 PET (although my new Oncologist did say I was due a revised nuclear scan).  It’s not a ‘functional’ issue (although it is caused by functional tumours). In fact the fibrosis is not mentioned on the Ga68 PET because it is not lighting up – but the lymph nodes surrounding it are mentioned and they are under suspicious as being active.

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

Next Steps

I’ve since has meetings with my Oncologist and Surgeon and a treatment plan is underway. My surgeon explained it all in his wonderfully articulate and brilliant surgical mind. Fortunately it’s not really urgent but pre-emptive treatment will be required at some point as the consequences of kidney/bladder function are quite severe. It’s also possible that PRRT will be considered as a way to treat the tumours responsible for new and renewed growth of the fibrosis.  I will keep my blog updated as things progress.

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.