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

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

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Neuroendocrine Cancer – 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!

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RonnyAllan.NET – Community Newsletter Covering September 2018

Newsletter Sep 18

Summary for September 2018

NET News

Several headlines covering the past month:

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

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

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

Personal NET News

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

Looking for Advice?

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

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

Blog Site Activity in September

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

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

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

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

Other Activity

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

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

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

Ronny Allan’s Private Facebook Group

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

New Audiences for NET Cancer

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

Engagements and Invites

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

Social Media and Stats

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

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

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

Summary

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

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

Thanks for reading

Please Share this post

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

 

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

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!

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

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

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

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

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 today – 14th August 2018. RIP Kerry.  Read her diagnosis and treatment story by clicking here and here.

I wish I had breast cancer
RIP 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.

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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My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

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 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

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My Diagnosis and Treatment History

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

 

Neuroendocrine Cancer: 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

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 and my 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). I then 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” – 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

So why was I excited? 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 rubber stamp the stability I’ve enjoyed for the past 5 years.

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 around my left pectoral (a new issue on this scan) and clavicle lymph nodes (octreotide scan 2010).  And, it has also formed part of an investigation into progression of my retroperitoneal fibrosis (initially diagnosed but issues spotted on recent surveillance CT). I now need surgery to prevent kidney/bladder issues and/or radiation therapy to tackle the root cause.

I am no longer a boring stable patient. 

The Ga68 PET Scan confirmed:

Bone Metastases. Report indicates “intense focal uptake“. A little bit of me is happy that 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 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“. Report also highlights left subpectoral lymph nodes which is new. 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. 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.
  4. 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.

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).  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.

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.

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!

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

Neuroendocrine Cancer - Mesenteric and Retroperitoneal Fibrosis -

Background

It has long been observed that certain Neuroendocrine Tumours (NETs) are often associated with the development of fibrosis, both local and distant. Fibrotic complications, such as Hedinger Syndrome (so-called Carcinoid Heart Disease), mesenteric and retroperitoneal fibrosis, may lead to considerable morbidity. We talk a lot about CHD but mesenteric fibrosis is actually more common. According to a paper (abstract linked below) by Professor Martyn Caplin (et al), “it often has a characteristic appearance of a mesenteric mass with linear soft tissue opacities radiating outward in a “wheel spoke” pattern associated with distortion of the surrounding tissues” (see graphic below). Another area that can be affected by fibrosis is the retroperitoneal region, actually very close to the mesentery.  The medical phenomena appears to be associated with small intestine NET (SI NET) patients.  Often labelled ‘Desmoplasia’, it is easily spotted on CT scans and is one of the unusual features of NETs vs other types of cancer.  Two examples are below:

Desmoplastic-reaction-The-characteristic-desmoplastic-reaction-comprises-a-mesenteric
Desmoplastic reaction. The characteristic desmoplastic reaction comprises a mesenteric mass (black asterisks) with linear soft tissue opacities radiating outwards in a ‘spoke-wheel’ or stellate pattern (black arrows) and associated indrawing of the surrounding tissues . Distortion and retraction of the adjacent soft tissues results in kinking of the small bowel and can cause partial or complete bowel obstruction. The mesenteric mass is often associated with coarse calcification (black arrowhead).  

 

Metastatic-carcinoid-tumor-to-the-root-of-the-mesentery-arrow-causing-typical
Metastatic Neuroendocrine Tumor to the root of the mesentery (arrow) causing typical circumferential desmoplastic

The mesentery and retroperitoneum areas

The mesentery and retroperitoneum are complex to describe but think of the mesentery as something holding the small intestine together with all its folds and the retroperitoneum describes the part of the abdomen that is generally closer to your backbone than to your belly button, i.e. behind the intestines.

What causes it, what problems does it cause and how can it be treated?

As with Hedinger Syndrome, which mostly causes right-sided fibrosis in the heart, mesenteric and peritoneal fibrosis is thought to be caused by the excess secretion of serotonin from NETs. I say ‘thought’ but no-one really knows for sure.  There’s a few quite recent studies on the subject which I’ll provide abstracts here.

Uppsala Hospital Sweden. In one study entitled “Clinical signs of fibrosis in small intestinal neuroendocrine tumours” first published in November 2016 by Uppsala Hospital Sweden, it said that it was caused by serotonin and other cytokines released from tumour cells and which may induce fibrosis, leading to carcinoid heart disease and abdominal fibrotic reactions. A cohort study of patients with SI NETs diagnosed between 1985 and 2015 was carried out – a total of 824 patients. Clinically significant abdominal signs and symptoms of fibrosis occurred in 36 patients. Of these, 20 had critically symptomatic central mesenteric fibrosis causing obstruction of mesenteric vessels, and 16 had retroperitoneal fibrosis causing obstructive uropathy with hydronephrosis (the swelling of a kidney due to a build-up of urine).  Extensive fibrosis causing mesenteric vessel obstruction and/or obstructive uropathy was more often associated with symptomatic and advanced disease encompassing lymph node metastases in the mesenteric root, para‐aortic lymph node metastases, as well as liver metastases and peritoneal carcinomatosis. Palliative intervention in terms of superior mesenteric vein stenting or resection of central mesenteric metastases and/or percutaneous nephrostomy and J stent treatment was beneficial in the majority of the patients. They concluded by saying that extensive abdominal fibrosis associated with clinically significant symptoms of intestinal ischaemia and/or obstructive uropathy was linked to advanced disease in patients with SI NETs. Prompt recognition and minimally invasive intervention was effective in disease palliation.

Royal Free Hospital. In another fairly recent paper entitled “Neuroendocrine tumors and fibrosis: An unsolved mystery?”, published by Professor Martyn Caplin of the Royal Free (and others), where this issue is discussed alongside the role of serotonin, growth factors, and other peptides in the development of NET related fibrotic reactions.  They also suggested serotonin as the culprit in both CHD fibrosis and in mesenteric/retroperitoneum and expressed many of the factors above.  This study suggested that up to 50% of SI NET patients may be involved but looking at both reports together indicates that the first study above only isolated clinically significant cases whereas Royal Free looked for signs in all cases.

Another recent paper (also a paid subscription) from Royal Free (Caplin et al) indicated that the severity of mesenteric desmoplasia did not seem to demonstrate a statistically significant effect on overall survival or long-term outcome (taken from a study of 147 patients at Royal Free London). Sounds like good news but there are clearly consequences that could arise from the issue.

I do not have access to all the texts above, only the abstracts which I’ve linked (all only available from paid subscriptions).

What happened to me?

Since I was diagnosed in 2010, I’ve always known I’ve had a fibrosis issue in the retroperitoneal area, as it was actually identified on my very first CT Scan, which triggered my diagnosis.  Here’s how the radiologist described it – “There is a rind of abnormal tissue surrounding the aorta extending distally from below the renal vessels. This measures up to 15mm in thickness”.  He went on to describe that “almost certainly malignant”.  The second and third scans would go on to describe as “retroperitoneal fibrosis” and “a plaque like substance”.  Interestingly the fibrosis itself does not appear to ‘light up’ on nuclear scans indicating it was not cancerous (see below).

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.

Summary

These issues need to be identified early on in diagnostics, preventative treatment considered and then monitored going forward.  Potential complications may include (but not be limited to) bowel and blood vessel obstructions.  Retroperitoneal fibrosis also needs to be monitored as potential complications may include (but not be limited to) obstructive uropathy.

For those worried about this issue, please note that when you look at the statistics from Uppsala, only 4.5% of cases are classed as clinically significant and with the retroperitoneal area, the figure reduces to 2%.

Recent Ga68 PET confirms active lymph nodes in the retroperitoneal area that might be contributing to continued or new fibrosis growth. Read more by clicking here.

Thanks for reading

Ronny

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

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


“What are you doing this afternoon”

video

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

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

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

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

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

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

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

You can hear me talk about my diagnosis by clicking here

Thanks for reading

Ronny

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

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My Diagnosis and Treatment History

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


177Lu-DOTA-EB-TATE – Long-lasting radionuclide therapy for advanced neuroendocrine tumors proves effective

For your information only. In the News.

Since PRRT was formally approved last year in USA and Europe (and other places), it’s triggered a whole mini-industry in PRRT variants or enhancements. An interesting study from China, a country starting to become very active in the NET world. I guess they have been active for some time given that I’ve seen their NET experts presenting at the last 2 years of ENETS in Barcelona.  In this particular study, there is linkages to the Laboratory of Molecular Imaging and Nanomedicine, NIBIB/NIH, Bethesda, Maryland in USA.

This is news of a first-in-human study presented at the 2018 Annual Meeting of the Society of Nuclear Medicine and Molecular Imaging (SNMMI) which demonstrated the benefits and safety of a new, long-lasting type of radionuclide therapy (PRRT) for patients with advanced, metastatic neuroendocrine tumors (NETs) – 177Lu-DOTA-EB-TATE. 

How is this different from the current PRRT standard – Lutathera?

“Lu-DOTA-EB-TATE is a “three-in-one” therapeutic compound, with an octreotate peptide to find the tumor, an ‘Evans blue motif’, which uses endogenous albumin as a reversible carrier to effectively extend the half-life in the blood and substantially increase targeted accumulation and retention within the tumor, and a therapeutic radionuclide to kill the tumor cells, to finally provide effective treatment of NETs,”  …….. explains Shawn(Xiaoyuan) Chen, PhD, senior investigator, of National Institute of Biomedical Imaging and Bioengineering at the National Institutes of Health , Bethesda, Maryland.

Lutathera-177 (177Lu)-DOTATATE (trade name Lutathera), a peptide receptor radionuclide tharapy (PRRT) with radiolabeled somatostatin analogues (peptides), was recently approved by the USA FDA and the EMA for the treatment of somatostatin receptor positive NETs. It is the therapeutic part of a nuclear medicine theranostic pairing. Gallium-68 (68Ga)-DOTATATE is the diagnostic agent used in  PET/CT scans that first locates and marks the lesions for follow-up with targeted PRRT delivery directly to the tumor cells which express high levels of somatostatin receptors (SSTRs). Because the PRRT binds to receptors expressed by the tumor cells, healthy cells are unharmed. However, the peptide quickly clears from the blood through the kidneys limiting the accumulation of radioactivity within tumors and making additional treatment cycles necessary to provide the therapeutic dose.

177Lu-DOTA-EB-TATE.  This first-in-human, first-in-class, Phase I trial (ID: NCT03308682) investigated the safety and dosimetry of a novel long-lasting radiolabeled somatostatin analogue that adds an albumin-binding Evans blue (EB, an azo dye) derivative to 177Lu-DOTATATE. Albumin, the most abundant plasma protein in human blood, is a natural transport protein and has a long circulatory half-life.  This is an open-label, non-controlled, non-randomized study.

For the study, conducted in collaboration with researchers at the U.S. National Institute of Biomedical Imaging and Bioengineering, 8 patients (6 men and 2 women ranging in age from 27 to 61 years old) with advanced metastatic neuroendocrine tumors were recruited from Peking Union Medical College Hospital and the Chinese Academy of Medical Sciences in Beijing, China.

Each patient underwent whole-body 68Ga-DOTATATE PET/CT. Five of the patients then accepted intravenous injection with a single dose of 0.35-0.70 GBq of 177Lu-DOTA-EB-TATE within one week, and were monitored at 2, 24, 72, 120 and 168 hours after 177Lu-DOTA-EB-TATE administration with serial whole-body planar and single photon emission computed tomography (SPECT)/CT images acquired. The other 3 patients accepted a dose of 0.28-0.41 GBq of 177Lu-DOTATATE and were monitored at 1, 3, 4, 24 and 72 hours with the same imaging procedures. Complete physical examinations, including vital signs, blood count, biochemistry, and immunology analyses were performed immediately before and 1, 3, and 7 days, as well as 3 months, after treatment.

Administration of 177Lu-DOTA-EB-TATE was well tolerated, with no adverse symptoms reported throughout the procedure and follow-up. The total effective dose equivalent and effective dose were 0.2048 ± 0.1605 and 0.0804 ± 0.0500 mSv/MBq for 177Lu-DOTA-EB-TATE and 0.1735 ± 0.0722 and 0.0693 ± 0.0317 mSv/MBq for 177Lu-DOTATATE. The liver, kidneys, bone marrow and total body received slightly higher doses (mGy/MBq) with 177Lu-DOTA-EB-TATE than with 177Lu-DOTATATE, while the spleen received lower doses with 177Lu-DOTA-EB-TATE. Blood clearance of 177Lu-DOTA-EB-TATE was also slower. Most importantly, 177Lu-DOTA-EB-TATE lasted in the tumors more than 4 times longer than 177Lu-DOTATATE.

Jingjing Zhang and Zhaohui Zhu of Peking Union Medical College Hospital point out, “By introducing an albumin binding moiety, this long-lasting radiolabeled somatostatin analogue has remarkably enhanced uptake and retention in SSTR-positive tumors, which is important to increase the therapeutic efficacy in patients. With proper selection of patients with advanced metastatic neuroendocrine tumors, 177Lu-DOTA-EB-TATE has great potential to be a highly effective treatment, while providing a safe dose with less frequency of administration than is possible with 177Lu-DOTATATE.”

FIGURE: SPECT/CT of a 45-year-old male patient with advanced NETs and multiple liver metastases – persistently retained in the tumors after 168 hours

Scans were done at 2, 24, 72, 120 and 168 hours after the administration of 177Lu-DOTA-EB-TATE. The radiopharmaceutical cleared from the blood pool over time and persistently retained in the tumors (arrows). Credit: J Zhang et al., Peking Union Medical College Hospital, Beijing, China; X Chen et al., Laboratory of Molecular Imaging and Nanomedicine, NIBIB/NIH, Bethesda, MD

Sources:

Abstract 118: “Safety, Pharmacokinetics and Dosimetry of a Long-lasting Radiolabeled Somatostatin Analogue 177Lu-DOTA-EB-TATE in Patients with Advanced Metastatic Neuroendocrine Tumors: A Phase 1 First-in-human Study,” Jingjing Zhang, MD,PhD, Yuejuan Cheng, MD,Hao Wang, MD, Jie Zang, PhD, Fang Li, MD, Chunmei Bai, MD, and Zhaohui Zhu, MD, Peking Union Medical College Hospital; Gang Niu, MD, Orit Jacobson, PhD4, and Xiaoyuan Chen, PhD, U.S. National Institutes of Health, Bethesda, MD. SNMMI’s 65th Annual Meeting, June 23-26, Philadelphia.  Link to SNMMI Abstract

Other articles in this series:

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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My Diagnosis and Treatment History

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

RonnyAllan.NET – Community Newsletter JUNE 2018

Summary for June

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

Better News

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

Blog Site Activity in June

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

 PET-CT-Scanner

Gallium PET Scans – Into the Unknown

My latest article ready for my appointment on 11 July 2018

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

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

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

Other Activity

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

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

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

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

New Audiences for NET Cancer

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

Engagements and Invites

  • I’m working on an invite to attend a pharma event in October at the guest of a major pharma company. I will update you when I’m allowed to release details.
  • In July, I will continue a dialogue in a patient app development coordinated by NET Patient Foundation.  I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here

Article features

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

Social Media and Stats

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

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

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

Summary

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

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

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

RonnyAllan.NET – Community Newsletter May 2018

 

Newsletter May 18

Summary for May

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

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

Better News

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

Blog Site Activity in May

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

 PET-CT-Scanner

Gallium PET Scans – Into the Unknown

My latest article following an appointment schedule for 5 June 2018

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

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

Neuroendocrine Cancer – normally slow but always sneaky More stats 1,672
Lutetium Lu 177 dotatate (Lutathera®) – PRRT More stats 1,179
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,136
Living with Neuroendocrine Cancer – Home Page More stats 1,114
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor More stats 1,024
Gallium PET Scans – Into the Unknown More stats 960
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 823
Don’t believe the hype – Neuroendocrine Cancer Myths debunked More stats 814
Background to my Diagnosis and Treatment More stats 727
Neuroendocrine Tumours – benign vs malignant More stats 696

Other Activity

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

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

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

    Join the chat group by clicking here (please answer the simple questions so I can process quicker). As at 31 May 2018, there were almost 1100 people in the group.

New Audiences for NET Cancer

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

Engagements and Invites

  • I attended a medical conference in Berlin as a patient advocate and speaker.  This was not a NET conference so is very exciting for me both as a patient activist and speaker.  I contributed to 3 separate activities:
    • Patient Doctor Communications – read more here
    • The Changing Face of Palliative Care – read more here.
    • My uninvited guest: perspective on chronic disease in young and old – read more here
    • I made a lot of new friends who are all now aware of our type of cancer. I’m hoping for further involvement in future events.
  • I presented a patient experience story in May to a newly established NET Dietitians group in UK – coordinated by the wonderful Tara Whyand.  A wonderful initiative to tackle an unmet need for patients in UK.  There’s a lot more to come from this initiative.
  • In May, I continued a dialogue in a patient app development coordinated by NET Patient Foundation.  I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • I’ve accepted an appointment to the Strategic Advisory Board on MultiMed Inc the owner of Cancer Knowledge Network based in Canada who have featured my articles in the past (https://cancerkn.com/) – They also publishes a magazine called Current Oncology which is Medline listed. This is not a NET site but my inclusion will no doubt raise the profile for us. Read more here

Article features

  • NET Research Foundation featured an article I wrote about the importance of clinical research, in particular how patients find out about clinical trials that might be of interest to them.  Read more here:
  • Facebook has been in the news regarding the security of user’s data.  I am pretty well up to date with security although determined hackers are always a risk.  I take this threat seriously and my personal account is as protected as it can be.  Any signs of suspicious activity on my blog, Facebook pages and group, or indeed any of my social media sites, is dealt with robustly in order to protect you and me.  I managed to get a quote in the WEGO Health article about the issue.  Check it out here.  Please be careful sharing personal data including in Facebook closed groups.
  • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice.  I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 73 times on my personal account which led to over 62,000 views.  I was mentioned 91 times by other tweeters, 2046 people looked at my profile and I gained 60 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel).  There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!  They recently listed me as one of the top 5 bloggers to watch in 2018.  This is great awareness and good feedback for my own efforts.  Read more here.  Also note the 2018 awards are now open.  If you would like to nominate me for an award, ask me how.

Social Media and Stats

Blog Milestone.  At the end of May, I accelerated past 590,000 blog views! Thank you all so much Keep sharing!  On track for one million by the end of 2019.

Facebook Milestone.  Surpassed 6200 followers by the end of May but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

Summary

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

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

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

Gallium 68 PET Scans – Into the Unknown

OPINION

Cancer is a growth industry …literally! More people are being diagnosed than ever before. Fortunately, more people are surviving than ever before. This is against a backdrop of better awareness, better screening in the big population cancers, and to a certain extent better diagnostic tools, all of which is leading to earlier diagnosis.

So how does this affect Neuroendocrine Cancer?

According to the latest SEER database figures for Neuroendocrine Cancer, one reason for the 7 fold increase in incidence rates since the 1970s is all of those things above including better diagnostics. This has led to a revised set of epidemiological information in many countries that have made the effort to accurately update their cancer registries and there are consistent reports of incidence rates way beyond the recognised rare thresholds. Another piece of good news is that the increase in NET incidence is also due to earlier diagnosis. To sum that up – NETs is also a growth industry.

Better diagnostics

Combined with more awareness and education (including the important pathologists), more NETs than ever are being found, and many found earlier. However, it’s not party time yet because there remains far too many misdiagnoses due to the low population of the disease and the difficulty in diagnosing it. I want to focus on scanning (thus the title of the article). Whilst there are really important factors involved in a diagnosis, such as tumor and hormone markers, and biopsies (tissue is the issue), a scan is very frequently what triggers many deeper investigations to unearth a NET, i.e. if you can see it, you can normally detect it (whatever the ‘it’ is). And I include the widespread availability and increasing advances in endoscopy/ultrasounds/cameras which have also been instrumental in picking up many Gastrointestinal NETs.

The Gallium 68 PET Scan

There’s a lot of excitement about the Gallium 68 PET Scan since it was approved by the US FDA. It’s not new though and has been in use in several countries for some time. It’s a ‘nuclear scan’ and can often form part of what is known as a ‘Theranostic Pair’ (i.e. in conjunction with a therapy – read more here).

What does it do?

It comprises two main components – a PET scanning machine, and the use of a diagnostic imaging agent which is injected into the person undergoing the scan. Most machines have an inbuilt CT which forms part of the scan. The agent is a somatostatin analogue labeled radionuclide (Gallium 68) and basically the PET will then be used to see where the peptide/radionuclide mix ‘loiters’ (i.e. where there are concentrations of somatostatin receptors (SSTR) normally indicating ‘focal intense abnormality‘ of the type that is regularly found with NETs.

Imaging Agents. There are different agent variants, namely, DOTATATE, DOTATOC and DOTANOC. In USA, you may sometimes see this referred as NETSPOT which is more of a commercial label for the agent (NETSPOT is a DOTATATE). Ga68 PET or SSTR PET are common descriptors for the entire process regardless of the compound. Clearly the scan works best for those with ‘somatostatin receptor positive’ tumours.

These newer agents have several benefits over the elderly In111-pentetreotide (Octreotide scan), including improved detection sensitivity, improved patient convenience due to the 2-3 hour length of the study (compared to 2 or 3 days with Octreoscan), decreased radiation dose, decreased biliary excretion due to earlier imaging after radiotracer administration, and the ability to quantify uptake. The quantification of the uptake can help decide whether a patient is suitable for radionuclide therapy such as PRRT. Eventually, all Octreotide scans should be replaced with SSTR PET but it will take some time (and money).

Octreoscan vs Ga68 PET

To confirm the advantages of SSTR PET over Octreotide scans, a study comprising 1,561 patients reported a change in tumour management occurred in over a third of patients after SSTR PET/CT even when performed after an Octreotide scan. Worth pointing out that SSTR PET is replacing the ageing Octreotide scan and not conventional imaging (CI). You can see the recommended scenarios for use of SSTR PET in this article published by the Journal of Nuclear Medicine. The slide below is interesting, although it was a small study. However, you can see the treatment changes as a result of a Ga68 PET are quite striking.

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

Any pitfalls with Ga68 PET Scan?

When you look at the study data above, it looks like an excellent addition to the diagnostic and surveillance toolkit for NETs. However, one of the challenges with modern scanning equipment and techniques is the ability to correctly interpret the results – in my opinion, this is almost as important as the efficiency of the machines and radionuclides. This requirement has been acknowledged in many articles and I particularly like this technical paper from a very experienced nuclear medicine physician Professor Michael Hofman from the Centre for Cancer Imaging at the Peter MacCallum Cancer in Melbourne. I had a chat with Professor Hofman who added that this is a very sensitive scan, so often picks up “new” disease, which isn’t really new, just never identifiable on standard imaging. However, there’s an excellent section on pitfalls in interpretation and I’m quoting an abstract below.

“Although GaTate PET/CT is a highly sensitive and specific technique for NETs, the attending physician or radiologist must be aware of various physiologic and other pathologic processes in which cellular expression of SSTR can result in interpretative error. Most of these processes demonstrate low-intensity and/or nonfocal uptake, in contrast with the focal intense abnormality encountered in NETs. Causes of interpretative pitfalls include prominent pancreatic uncinate process activity, inflammation, osteoblastic activity (degenerative bone disease, fracture, vertebral hemangioma), splenunculi or splenosis, and benign meningioma.”

It follows that failure to interpret nuclear scans alongside the patient’s clinical history can sometimes result in two big issues for patients:

1. Unnecessary worry when ‘something’ shows up which is actually a false positive.

2. Something which leads to irreversible treatment when it is was not required.

Just imagine something which is 40 times better than current PET scan technology? That’s what the scientists are working on now. Here’s an example called “EXPLORER“. You can update yourself here. The issue of interpretation will be even more difficult when the new generation of scans appear. There’s an excellent article from Cancer Research UK talking about the modern phenomenon called ‘overdiagnosis’ – read here

Lanreotide and Octreotide and timing the scan?

From the same technical document referred above, here’s an extract (updated to include Lanreotide). Uptake at physiologic and pathologic sites may change in patients who undergo concomitant short- or long-acting somatostatin analog therapy, which competes with the radiotracer for bioavailability. We generally discontinue short-acting octreotide for 12–24 hours and perform imaging in the week before the next dose of long-acting Octreotide/Lanreotide, which is typically administered monthly.

Having my first Ga68 PET Scan after 8 years of  living with NETs? 

When I was offered my very first Ga68 PET/CT at my recent 6 monthly surveillance meeting, I was both excited and apprehensive. I was diagnosed in 2010 and my staging was confirmed via an Octreotide Scan pointing out two further deposits (one of which has since been dealt with). I’ve had two further Octreotide Scans in 2011 and 2013 following 3 surgeries. The third scan in 2013 highlighted my thyroid lesion – still under a watch and wait regime. So far, my 6 monthly CT scans seemed to be adequate surveillance cover and my markers remain normal.

I’m apprehensive because of the ‘unknown’ factor with cancer – what is there lurking in my body that no-one knows about and which might never harm me.

I’m excited because it might just confirm that there is nothing new to worry about.

However, I’m both excited (morbidly) and apprehensive because the scan might find something potentially dangerous. As we know, NETs are mostly slow growing but always sneaky. That said, at least I will know and my medical team will know and be able to assess the risk and decide on a course of action.

Doing the Scan

On 5th June 2018, I attended a very experienced Ga68 PET establishment called Guys Cancer Centre in London.  I arrived and was immediately taken under the wing of the nuclear medicine guys who asked me fairly in depth questions about my clinical background.  They then inserted a cannula ready for the injection of the radiolabelled tracer.  I was then installed in the ‘hot room’ where I had to remain for 1 hour to let the tracer circulate.  After 1 hour, I was taken to the PET scanner and it took around 30-35 minutes. Following that I was allowed to leave for home.  It was an extremely easy experience and a significant improvement on doing the 3 day Octreotide scan.

20180605_141229

Door to the ‘hot room’

 

The Results of the Ga68 PET Scan – CLICK HERE

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

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

RonnyAllan.NET – Community Newsletter April 2018

Headlines

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

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

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

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

I caught this news in my social media NET

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

Blog Site Activity  

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

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

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

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

Other Activity

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

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

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff.  I have so many other sites you can contact me on – all inside the newsletter.
  • The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
  • As the number of people contacting me has increased so much, it’s becoming very difficult to answer all questions myself. I’ve therefore set up a chat room here (I’m not the only one who can answer questions!).  This is not like many forums, it’s a place to make people feel safe and to discuss without many of the other distractions that can be found on forums and is moderated accordingly.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues.  The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc)  Join the chat group by clicking here (please answer the simple questions so I can process quicker). As at 30 Apr 2018, there were 791 people in the group.

New Audiences for NET Cancer

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

Engagements and Invites

  • I have been invited to join a medical conference in Berlin as a patient advocate.  This is not a NET conference so is very exciting for me as a patient activist and speaker.  I’ve been asked to contribute to 3 separate activities:
    • Patient Doctor Communications – read more here
    • The Changing Face of Palliative Care – read more here.
    • My uninvited guest: perspective on chronic disease in young and old – read more here
  • I’m getting ready to present a patient experience story in May to a newly established NET Dietitians group in UK – coordinated by the wonderful Tara Whyand.  Very excited about this, a wonderful initiative to tackle an unmet need for patients.
  • In April, I attended a meeting coordinated by NET Patient Foundation about a patient app.  Apparently I’m on the project team and happy to help if I can. I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • Facebook has been in the news regarding the security of user’s data.  I am pretty well up to date with security although determined hackers are always a risk.  I take this threat seriously and my personal account is as protected as it can be.  Any signs of suspicious activity on my blog, Facebook pages and group, or indeed any of my social media sites, is dealt with robustly in order to protect you and me.  I managed to get a quote in the WEGO Health article about the issue.  Check it out here.  Please be careful sharing personal data including in Facebook closed groups.
  • In Feb, my blog site was recommended to health professionals by Dr Jane Maher who is the Chief Medical Officer for Macmillan Cancer Support, one of the biggest Cancer Support organisations in the world.  This was out of the blue but gratefully accepted!  Dr Maher continues to cite this site in April for contributing to general cancer awareness and I’m thankful for that.
  • Article features.
    • NET Research Foundation featured an article I wrote about the importance of clinical research, in particular how patients find out about clinical trials that might be of interest to them.  Read more here:
    • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice.  I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 113 times on my personal account which led to over 94,000 views.  I was mentioned 91 times by other tweeters, 2208 people looked at my profile and I gained 35 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel).  There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!

Social Media and Stats

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

Facebook Milestone.  Surpassed 6000 followers by the end of April but my projected numbers are down so far in 2018 (despite a 20% increase in blog hits). The Facebook page is now my biggest outlet for awareness and education so please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

Summary

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

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

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

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


Researchers are testing the drug Sapanisertib to see if it can halt the progression of pancreatic NETs (pNETs) which cannot be surgically removed, have not responded to other treatment, and have spread to other parts of the body.

What is Sapanisertib?

Sapanisertib is one of a group of targeted therapy drugs that interferes with tumor progression by inhibiting an enzyme known as mTOR which a tumor cell needs for growth.  In fact this is the same technique used in Afinitor (Everolimus), already approved for NETs.

It is also being tested in a number of different advanced cancers, including bladder, kidney, breast, liver, and certain types of lung cancers, among others.

The Clinical Trial

The primary goal of the phase II study is to evaluate how well pNET tumors respond to Sapanisertib. To qualify for this trial patients must have advanced pNET that cannot be surgically removed, and which have not responded to previous treatment with similar drugs. All participants will receive Sapanisertib, and will be checked periodically to see if their tumors are responding to the drug.

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided at this link which provides more details about the Sapanisertib pNET trial – click here and check the inclusion and exclusion criteria; and other data.  There are 354 study locations across the USA.

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!

RonnyAllan.NET – Community Newsletter March 2018

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

Dr James Yao
Dr Jonathan Strosberg

I caught this news in my social media NET

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

Blog Site Activity  

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

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

 

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

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

Other Activity

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

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

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff.  I have so many other sites you can contact me on – all inside the newsletter.
  • The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
  • As the number of people contacting me has increased so much, I’ve set up a chat room here (I’m not the only one who can answer questions!).  This is not a forum, it’s a place to make people feel safe and to discuss.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues.  The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc)  Join the chat group by clicking here (please answer the simple questions so I can process quicker). As at 1 Apr 2018, there were 608 people in the group.

New Audiences for NET Cancer

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

  • Facebook has been in the news regarding the security of user’s data.  I am pretty well up to date with security although determined hackers are always a risk.  I take this threat seriously and my personal account is as protected as it can be.  Any signs of suspicious activity on my blog, Facebook pages and group, or indeed any of my social media sites, is dealt with robustly in order to protect you and me.  I managed to get a quote in the WEGO Health article about the issue.  Check it out here.
  • For example. my story was once again featured on World Cancer Day – click here.  Please join my World Cancer Day calendar event to be reminded each year – click here and select ‘Going’.
  • In Feb, my blog site was recommended to health professionals by Dr Jane Maher who is the Chief Medical Officer for Macmillan Cancer Support, one of the biggest Cancer Support organisations in the world.  This was out of the blue but gratefully accepted!  
  • Article features.
    • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice.  I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  There are people regularly retweeting my stuff who do not have a personal interest in NETs and I am now regularly copied in on many tweets by those wishing to use my account as a vehicle for dissemination. In the last month, I tweeted 134 times on my personal account which led to over 111,000 views.  I was mentioned 113 times by other tweeters, 3154 people looked at my profile and I gained 35 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel).  There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  In March, I managed to get into a very well contested short list for an article about the use of Facebook for health communities in light of the recent bad press for the service. The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!

WEGO Awards

Engagements and Invites

  • Attended a meeting coordinated by NET Patient Foundation about a patient app.  Apparently I’m on the project team and happy to help if I can.  I always react positively to requests for help from INCA’s national NET affiliates, providing I have the bandwidth available to support.
  • I have been invited to join a medical conference in Berlin as a patient advocate.  This is not a NET conference so is very exciting.  I’ve been asked to contribute to doctor-patient communications and the fear factor of living with cancer (in addition to a patient story of course).
  • I’m getting ready to present a patient experience story in May to a newly established NET Dietitians group in UK – coordinated by the wonderful Tara Whyand.  Very excited about this, a wonderful initiative to tackle an unmet need for patients.

Social Media and Stats

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

Facebook Milestone.  I have my eyes set on 6000 followers by the end of April, could be sooner with your direct involvement!  The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

Summary

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

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

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

Namaste Irrfan Khan

irrfan
Instagram by Irrfan Khan on 19th March 2018 from “The Dorchester”

Irrfan Khan, Indian actor and producer, well-known for movies, Slumdog Millionaire, Life of Pi, Jurassic World, The Amazing Spider-Man, has been diagnosed with a Neuroendocrine Cancer.

What type of NET?

Irrfan released information on 19 June 2018 indicating it was a high grade Neuroendocrine Cancer – although there is no detail of the ‘differentiation‘ that would indicate a ‘Neuroendocrine Tumour’ (NET) or a ‘Neuroendocrine Carcinoma’ (NEC). There have been no confirmed reports about the primary location. Read his “Note from London” here

I’m sure we all wish the best for him.

Where is he being treated?

Irrfan initially said he would be travelling “overseas” for treatment.  Fox News (USA) said that “he hasn’t elaborated on his treatment plan, though he did say he would be treated somewhere outside the U.S.”  This has been contradicted by other online sources in India claiming he will be treated in USA.  However, there are now firm reports he is in London for treatment by a London based NET Specialist.  He has posted on Instagram from “The Dorchester” (lead picture), and his announcement on 19 June 2018 was entitled “A note from London”.

Is this generating awareness of NETs?

Yes and we in the community should be thankful to Irrfan for going public. However, initially, the news resulted in a flurry of items about Neuroendocrine Tumours (NET), some accurate, some not so accurate.  Many commentators made assumptions of a brain tumour based on the ‘Neuro’ part of the word Neuroendocrine, this was dismissed by Irrfan in his initial tweet statement.

I noted a 3000% increase in blog hits from India since the news hit.  I’ve had many google alerts since the announcement was made and they all mainly contain simple facts.  Some commentators have done their own research and are interpreting and then printing many strange things which are wrong about NETs.  It follows that some of the awareness being generated is not the highest quality we should expect.  However, this article gives a good insight into how NETs are managed on India.

What happens next?

This article will be kept live as I hear more news of his diagnosis and treatment.

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 Neuroendocrine Cancer – HALF A MILLION views

I am totally astonished to have been able to accumulate 500,000 (half a million) views of my blog. When I first set it up in Apr 2014, it was just to help spread awareness whilst I was walking the 84 miles of Hadrian’s Wall with my wife Chris. I never for thought for one minute I would still be doing it today and accumulate over 11,000 followers across all my social media sites, from all over the world.

Can’t stop, won’t stop. Onwards to 1 million views for Neuroendocrine Cancer awareness.

My key aims are international level awareness, advocacy, campaigning, and support for NET patients via all my social media accounts. I realise I’m not your regular NET advocate and I do things differently. However, I’m fairly certain that has played a part in getting to this stage.

My main sites are here:

Blog – ronnyallan.NET – 500,000 blog views as at 7 March 2018. Click here.

Twitter – @ronnyallan1 and @netcancerblog

Facebook – I have numerous accounts:

NET Cancer Blog (my main site with around 6000 as at March 2018) – click here and ‘Like’
Ronny Allan – additional output – click here and ‘Like’

Newsletter – extending the reach into wider areas via a daily newsletter from twitter and other sources. click here to subscribe.

Instagram – click here to follow

Many of you who read this will already be on these sites so please ‘Follow’ or ‘Like’ as appropriate – be careful you don’t ‘Unfollow’ or ‘Unlike’.

There are so many other sources of routes into my blog and I’m grateful to the many patient advocate organisations, patient advocates, the healthcare community in general and many, many, more. If you’re reading this, thank you so much.

Please note:
All information provided on this Facebook page or any of my social media accounts does not constitute professional medical advice. See my disclaimer here: DISCLAIMER

Message me here: http://m.me/NETCancerBlog

I also have a private Facebook group, let me know if you’re interested.

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 February 2018

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

I’m so busy with personal contacts, I decided to set up a chat room so that other people can help me answer some really difficult questions!  This ‘chat rom’ is not designed to run like a traditional Facebook forum, it’s a place to make people feel safe and to discuss without the usual distractions and dramas that people often encounter. And …. it’s about learning.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people (I already have a few of the latter). It’s also a place where I will bring in expertise to chat about various issues.  The first online chat was held on 28 Feb hosted by a world-renowned NET specialist dietitian – subject was the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc).

Join the chat group by clicking here or just search for this group in Facebook – “Neuroendocrine Cancer – Ronny Allan’s Group“. I’m not intending it to be a large group so I’ll be capping it around 1000 to take a few months ‘breather’ before deciding what to do. Please answer the simple questions so I can process quicker.

I caught this news in my social media NET

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

Blog Site Activity  

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

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

 

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

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

 

Other Activity

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

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

  • I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer
  • Please also note that due to sheer numbers of requests, I cannot accept telephone or video calls on a one to one basis. Please just message me and I will respond – see “Send Message” button when you CLICK HERE. (also please ‘Like’ this page if you have not already done so). On a personal note, please do not send me friend requests on my personal Facebook page, I get so many and want to keep this little area of ‘sanity’ free of NET stuff.  I have so many other sites you can contact me on – all inside the newsletter.
  • The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
  • As the number of people contacting me has increased so much, I’ve set up a chat room here (I’m not the only one who can answer questions!).  This is not a forum, it’s a place to make people feel safe and to discuss.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues.  The first online chat was held on 28 Feb about the problems NET patients can have with being unable to produce sufficient digestive enzymes and the treatment to correct this issue PERT (Creon etc)  Join the chat group by clicking here (please answer the simple questions so I can process quicker)

New Audiences for NET Cancer

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

  • For example. my story was once again featured on World Cancer Day – click here.  Please join my World Cancer Day calendar event to be reminded each year – click here and select ‘Going’.
  • In Feb, my blog site was recommended to health professionals by Dr Jane Maher who is the Chief Medical Officer for Macmillan Cancer Support, one of the biggest Cancer Support organisations in the world.  This was out of the blue but gratefully accepted!  
  • Article features.
    • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice.  I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  There are people regularly retweeting my stuff who do not have a personal interest in NETs. In the last month, I tweeted 148 times on my personal account which led to over 113,000 views.  I was mentioned 74 times by other tweeters, 2500 people looked at my profile and I gained 32 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel).  There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. This has been a huge success from my point of view resulting in an increase in blog hits and to a wider population than just NETs. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!

WEGO Awards

Engagements and Invites

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

Social Media and Stats

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

Facebook Milestone.  I have my eyes set on 6000 followers by the end of March, could be sooner with your direct involvement!  The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

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

Other Activity

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

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

Thanks for reading

Ronny

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

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!

Things to do today

When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt.

I’ve been living with my condition for almost 8 years and I’m a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term!

Of course, sometimes you have little choice if you’re ill from your condition or something routine.

So now and then, I just breathe in and breathe out (then repeat). It’s very enjoyable!

Take a break if you need one.

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

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

 

wego blog 2018 winner

Don’t be underactive with your Thyroid surveillance

From other posts, you’ll be aware of the thyroid lesion (now 17x19mm) which I’ve been tracking since 2013. The surveillance has included routine thyroid blood tests, mainly TSH, T3 and 4. Due to trends in TSH and T4, it’s been suggested I’m borderline hypothyroidism. I’m out of range in TSH (elevated) but the T4 is currently at the lower end of the normal range.  On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism. Levothyroxine is essentially a thyroid hormone (thyroxine) replacement.  One month after taking these drugs, my thyroid blood levels are now normal for the first time in 4 years (since there are records of test results – it might be longer).

The NET Connection?

To put things into context, hypothyroidism is an extremely common condition and the main treatment is administration of thyroid hormone  replacement therapy (i.e. Lewvothyroxine).  This is in the top 5 of the most commonly prescribed medication in USA and UK.

However, there are connections with NETs.  Firstly there is one type of cancer known as Medullary Thyroid Cancer (MTC) and it also has a familial version known as Familial MTC or FMTC.

There are also connections between regular Neuroendocrine Tumours (NETs) and the  thyroid.  I can often be a site for metastasis, something I have not yet written off given it lights up on nuclear scanning – although my biopsy was inconclusive.   You can see a summary of the connections and my own thyroid issue in more detail in my article “Troublesome Thyroids”. Please note the parathyroid glands are beyond the scope of this article.

Thyroid Function – the Lanreotide/Octreotide connection

Before I continue talking about hypothyroidism, here’s something not very well-known: Somatostatin analogues might cause a “slight decrease in Thyroid function” (a quote from the Lanreotide patient leaflet). The Octreotide patient leaflet also states “Underactive thyroid gland (hypothyroidism)” as a side effect. Many sources indicate that thyroid function should be monitored when on long-term use of somatostatin analogues. It’s also possible and totally feasible that many NET patients will have thyroid issues totally unrelated to their NETs. Remember, NET patients can get regular illnesses too!

What is Hypothyroidism?

Hypothyroidism is a condition in which your thyroid gland doesn’t produce enough of thyroxine. This leads to an underactive thyroid. It seldom causes symptoms in the early stages, but over time, untreated hypothyroidism can cause a number of health problems, such as obesity, joint pain, infertility and heart disease. Both men and women can have an underactive thyroid, although it’s more common in women. In the UK, it affects 15 in every 1,000 women and 1 in 1,000 men. Children can also develop an underactive thyroid.

What causes Hypothyroidism?

  • Autoimmune thyroid disease sometimes called Hashimoto’s thyroiditis
  • Radioactive iodine or surgery to correct hyperthyroidism or cancer
  • Over-treatment of hyperthyroidism with anti-thyroid drugs
  • Some medicines
  • A malfunction of the pituitary gland

What are the symptoms of Hypothyroidism?

The signs and symptoms of hypothyroidism vary, depending on the severity of the hormone deficiency. But in general, any problems you have tend to develop slowly, often over a number of years. At first, you may barely notice the symptoms of hypothyroidism, such as fatigue and weight gain, or you may simply attribute them to getting older. But as your metabolism continues to slow, you may develop more-obvious signs and symptoms. Hypothyroidism signs. Below are major symptoms associated with hypothyroidism:

    • Fatigue
    • Weakness
    • Weight gain or difficulty losing weight (despite reduced food intake)
    • Coarse, dry hair and dry skin
    • Hair loss
    • Sensitivity to cold
    • Muscle cramps and aches
    • Constipation
    • Depression
    • Irritability
    • Memory loss
    • Abnormal menstrual cycles
    • Decreased libido
    • Slowed speech (severe cases)
    • Jaundice (severe cases)
    • Increase in tongue size (severe cases)

Check out this excellent short video from WebMD – click here or the picture below.  It’s based on USA but most of it is relevant globally.

thyroid video webmd

You don’t have to encounter every one of these symptoms to be diagnosed with hypothyroidism. Every patient’s experience with the disorder is different. While you may notice that your skin and hair have become dry and rough, another patient may be plagued more by fatigue and depression.

When hypothyroidism isn’t treated, signs and symptoms can gradually become more severe. Constant stimulation of your thyroid gland to release more hormones may lead to an enlarged thyroid (goiter). In addition, you may become more forgetful, your thought processes may slow, or you may feel depressed.

Now ….. some of these symptoms look very familiar to me and they also look very familiar to some of the comments I see on patient forums related to somatostatin analogues and some of the NET syndromes – that jigsaw thing again. I guess it’s possible that people are borderline hypothyroidism prior to taking somatostatin analogues and the drug pushes them out of range (similar to what it’s known to do with blood glucose levels and diabetes). I’m not suggesting a direct clinical link in all cases but what I am suggesting is that perhaps some of the answers might be found in checking Thyroid hormone levels.

What are the Thyroid Hormone tests for Hypothyroidism?

A high thyroid stimulating hormone (TSH) level with a low thyroxine (T4) level indicates hypothyroidism. Rarely, hypothyroidism can occur when both the TSH and T4 are low. A slightly raised TSH with a normal T4 is called subclinical, mild, or borderline hypothyroidism. Subclinical hypothyroidism can develop into clinical or overt hypothyroidism

Routine ‘Thyroid blood tests’ from your doctor will confirm whether or not you have a thyroid disorder. I now test for TSH (thyroid-stimulating hormone), T4 every 6 months. Mostly in range but recently TSH is spiking out of range and T4 is consistently at the lower end of normal range.

Can hypothyroidism be treated?

Yes. A synthetic version of thyroxine taken daily as prescribed. e.g. Levothyroxine tablets

OK that’s Hypothyroidism – what is Hyperthyroidism?

Hyperthyroidism is a condition where the thyroid gland produces too much thyroid hormone for the body’s needs. It is also known as an overactive thyroid or thyrotoxicosis. An overactive thyroid can affect anyone, but it’s about 10 times more common in women than men and it typically starts between 20 and 40 years of age.

      • Hyper – means “over -“
      • Hypo – means “under -“
      • The terms “hyperthyroid” and “thyrotoxic” are interchangeable

Causes

      • Graves’ disease – the most common cause
      • A toxic nodular goitre (a goitre is an enlarged thyroid gland)
      • A solitary toxic thyroid adenoma (an adenoma is a clump of cells)
      • Thyroiditis (infection or inflammation of the thyroid gland) which is temporary

Common Symptoms

A speeding up of mental and physical processes of the whole body, such as

      • weight loss, despite an increased appetite
      • palpitations / rapid pulse
      • sweating and heat intolerance
      • tiredness and weak muscles
      • nervousness, irritability and shakiness
      • mood swings or aggressive behaviour
      • looseness of the bowels
      • warm, moist hands
      • thirst
      • passing larger than usual amounts of urine
      • itchiness
      • an enlarged thyroid gland

If the cause is Graves’ disease, you may also have ‘thyroid eye disease’. Smokers are up to eight times more likely to develop thyroid eye disease than non-smokers.

Diagnosis

      • By a physical examination and blood tests
      • A low thyroid stimulating hormone (TSH) level with a high thyroxine (T4) level indicate hyperthyroidism

Treatment Options

      • Antithyroid drugs
      • Surgery to remove all or part of the thyroid gland
      • Radioactive iodine to destroy most of the thyroid tissue

Research sources used to compile this post:

1. Lanreotide Patient Leaflet.

2. Octreotide Patient Leaflet.

3. British Thyroid Foundation. (particularly how to interpret Thyroid results – click here) – always check the unit of measure when comparing blood result ranges)

4. The UK NHS – Hypothyroidism (under active) and Hyperthyroidism (over active)

 

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!

RonnyAllan.NET – Community Newsletter January 2018

A great start to the year in both NETs in the news and my social media activity.  Of course the headline is the US FDA approval of Lutathera (Lu-177) – i.e. PRRT

I caught this news in my social media NET

  1. FDA finally approves PRRT in USA. Long awaited and has caused much excitement on all forms of social media. I’m very pleased for my USA friends but we mustn’t forget it’s also required in so many other places.  Help me populate locations in my live article on  PRRT click here.
  2. NET Epidemiology continues to be discussed and (yet) another well known NET expert confirms my 2 year old article saying that the  disease can no longer be considered rare. I suspect more dominoes will follow. Click here for the evidence.
  3. MIDATECH Pharma announced intention to carry out human trials of Q-Octreotide – check out my article covering this potential new drug.  Click here

Blog Site Activity  

Due to the vagaries of Facebook inner workings, some of these articles created or majorly updated in Jan 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 now take food with my medicine!  A light-hearted discussion about taking pills/capsules as a NET patient
  Shame on you! An invisible illness article based on a true story.  Some people can be cruel.
  PERT (Creon etc).  Who needs it and why.
PRRT – The Sequel? – Targeted Alpha-emitter Therapy (TAT)  The future of PRRT type treatment?
  My December 2017 Newsletter in case you missed it.

January 2018 was a record breaking month since blog inception.  Here are the top 10 most read articles which contributed to Jan’s figures:

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

Other Activity

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).
  • The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.
  • As the number of people contacting me has increased so much, I’ve set up a chat room here (I’m not the only one who can answer questions!).  This is not a forum, it’s a place to make people feel safe and to discuss.  I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people. It’s also a place where I will bring in expertise to chat about various issues.  The first online chat will be about PERT (Creon etc) – date to be confirmed by probably around end of Feb).  Join by clicking here (please answer the 3 simple questions)

New Audiences for NET Cancer

From Day 1, I said it was my aim to find new audiences for NETs rather than just share stuff within our own community. I’m doing this although it may not always be apparent.  For example. my story is featured on World Cancer Day – click here.  Please join my World Cancer Day calendar event to be reminded each year – click here and select ‘Going’.

  • Article features.
    • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  Cure Magazine has a readership of 1 million.  Click here to read more. In October, I was featured in Cure Magazine twice.  I have been so busy in 2017 but I have plans to increase my presence there in 2018:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of research stuff there, in addition to new audiences. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  There are people regularly retweeting my stuff who do not have a personal interest in NETs. In Jan, I tweeted 187 times on my personal account which led to over 145,000 views.  I was mentioned 101 times by other tweeters, 3003 people looked at my profile and I gained 67 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 and I’ve had a growth spurt in January. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.

  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences in addition to enriching my experience as a Patient Leader.  WEGO is a fantastic organisation!

WEGO Awards

Speaking Engagements

I’ve been invited to speak to a local (ish) NET patient support group, just tying up the details (watch this space).

Social Media and Stats

Blog Milestone.  At the end of January, I accelerated past 470,000 blog views! Thank you all so much Keep sharing!  On track for half a million by end of February.

Facebook Milestone.  I have my eyes set on 6000 followers by the end of March, could be sooner with your direct involvement!  The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested. There are buttons to share the page and invite others to ‘Like’ it.

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

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 January.  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!

I now take food with my medicine!


If you want to strike up a friendly conversion with a Brit, ask him or her about the weather – we’re really famous for our weather conversations and they normally focus on rain or clouds!  However, despite the famous British ‘reserve’ and ‘stiff upper lip’, they also frequently talk about being ‘under the weather’, a phrase meaning slightly unwell or in low spirits.

I find myself smiling at some of the conversations I hear in medical establishment waiting rooms, particularly the potentially long wait for blood tests.  Here, conversations bypass the weather and focus on being under the weather! I thought I was a regular when I started to recognise people in the queue (line!) and their pill conversations.  Statements such as “Yes, I just started a ‘blue chap’ ” (medical names are sometimes hard to pronounce).  Normally followed by “I’m on that one too and I take it along with my yellow and white chaps“.  Some people seem to be taking a veritable rainbow of ‘chaps’.  Strangely, some people appear to be quite proud of how many ‘chaps’ they take. I tend to maintain the traditional British reserve and a stiff upper lip in waiting rooms, so I keep quiet (actually I’m just happy to be inside away from the weather!).

I might join in one day and I wonder if they would be impressed with my tally of chaps? I have a funny feeling my tally of drugs is nothing compared to some of you guys and hope you will comment to prove me right! I don’t think I’m proud to give you my list but here’s my ‘chaps’, some prescription, some over the counter:

  • Apixaban (Eliquis).  To prevent a reoccurrence of pulmonary emboli (PE). Unfortunately, I had PE after my big surgery in 2010. 2 per day.
  • Pancreatic Enzyme Replacement Therapy (Creon).  Recently added, anything from 6 upwards per day.  Check out this article on PERT.  Check out this article on Malabsorption with references to NET dietitians.
  • Multi-Vitamin (50+ age).  I’ve actually been taking these since a few years before diagnosis in 2010.  NET patients can be at risk of vitamin and mineral deficiencies.  Check out this article on the issues and with references to NET dietitians.
  • Vitamin B Complex. This was added in 2013 to mainly tackle low B12 (despite my multi-vit containing 400% RDA) and it seemed to help with fatigue.
  • Vitamin D3. This was also added in 2013 to tackle low Vit D levels (again, despite my multi-vit containing 200% RDA). 10µg (400iu).  D3 is normally the recommended form of Vitamin D to take, easiest to absorb and more natural.  Vitamin D3 is also known as cholecalciferol.
  • Probiotic.  This was also added in 2013 to try to offset some of the abdominal issues that many NET patients seem to have.  I take a 5 billion dose and it seems to help.  Check out this article with references to NET dietitians.
  • Omega 3.  This is also something I had been taking since before my diagnosis.  I think I took it for a couple of reasons, my diet did not really include foodstuffs containing Omega 3 and I was experiencing some joint pain in my hands.  I just never stopped taking it.  Dose size 1000mg.
  • Lanreotide (Somatuline Autogel).  An injection rather than a pill/capsule.  Quite a big chap!  You can read all about my relationship with Lanreotide by clicking here.
  • Levothyroxine. One 50mcg tablet each morning.  My blood tests are indicating hypothyroidism – check out my whole thyroid story by clicking here.  All NET patients need to keep an eye on thyroid levels.  Read why here.
  • Seretide and Ventolin.  These are asthma drugs, a preventer and a reliever respectively.  I hardly ever take the latter nowadays.  I had mild asthma as a child, it went at 16 and came back at 35.  I take 2 puffs of Seretide night and day.  Seems to help.  Ventolin seems to be only required if I have a cold or flu thing going on.

Of course, most people have lots of other stuff in the ‘medicine box’ ready for ad hoc issues as they arise (pain killers, imodium, cough mixture, anti-histamines, indigestion, etc etc).   I could go on forever.

Please always consult your specialists or dietitian about the requirements for drugs and supplements.  You may not actually need them.  I only take my supplements after very careful consideration, in reaction to low blood vitamin/mineral tests and listening to what ‘NET aware’ dietitians say (you’ll find references in some of the articles above).

Warning:  You should always think carefully about over the counter stuff (including online) as there’s a lot of ‘scammers’ out there selling counterfeit supplements.  Always buy from a reputable source.  With supplements, remember in most countries they are not regulated in the same way as medicines so it’s worthwhile checking they are compliant with regional food supplements directives.  The supplements provider I use is actually approved by the Medicines and Healthcare Products Regulatory Agency (MHRA) covering UK.  I’m sure there will be similar approval organisations where you live.  Also be careful of some claims about the miracle cure of certain food supplements.  There are plenty sites with fake health news online (check out my article on this – click here).

Finally, don’t forget to take your chaps, they should help you keep well!

Shame on you!

I don’t look ill.  I didn’t even look ill when I was diagnosed with metastatic and incurable Neuroendocrine Cancer.  People have even told me I look better than many people my age who do not have an incurable disease!  There’s a bit of me which is very happy with that predicament, although I’d rather look less good and not have cancer.

Many cancer patients have illnesses that cannot be seen, they are invisible. I know quite a lot of cancer patients who don’t look ill but I know they have a life threatening disease and things could change quickly.  For example, some cancer patients who look really well can need quick access to facilities such as toilets as side effects can sometimes not only be instant but also painful.  Some just need a place to administer medicine when they need it, often this occurs in the most inconvenient places.  There are many other ‘invisible’ problems that might strike at any moment.

Some patients actually avoid going on long journeys (or even short journeys), some avoid social activities and simply remain at home because their illness is unpredictable – they become very risk averse.  And they look really well!  And it’s terrible they feel they need to do this.

I know some patients who are classed as ‘disabled’ because of their condition (I’ll use the word ‘disabled’ as a generic term because the terminology differs from country to country).  I guess some of them don’t look disabled (in terms of people’s perceptions) and on the outside look pretty well.  Many people assume that ‘disabled’ means you have some physical deformity which is wrong when you look at various health criteria worldwide.  Within these systems, there is also the possibility of a ‘disabled car parking permit’ (again a generic term as it might be called something different where you live).

On the subject of car parking, there are huge campaigns in UK about car parking charges for cancer patients.  Many hospital car parks are on ‘private land’ and fees are levied. I’m not classed as disabled, I wouldn’t meet the criteria.  However, I’m a frequent visitor to hospitals for tests/treatments and appointments.  I’ve spent a considerable amount of money on hospital car parking in the last 7 years.  The hospital I attend only provides free parking for cancer patients who are undergoing treatment (something I didn’t know for the first 4 years of my treatment).  So if I’m attending for blood tests, scans or appointments, there is no entitlement for free parking.  A couple of years ago, I met with my local hospital about car parking for cancer patients and was delighted to obtain a free pass when I explained the sheer number of visits I was making adding that it was probably for the rest of my life.  I’m due to meet them soon to enquire about further plans to extend the current ‘treatment only’ benefit for cancer patients.  If you google this issue, you will see plenty of comment!  I guess these issues are pretty common worldwide with some countries faring better than others.  That’s to be expected.

However, what is totally unexpected is this story which I will now lay outIt’s a reminder that you have no idea what’s going on in people’s lives.

Lexi Baskin is a cancer patient and was attending her hospital to have radiotherapy, and has a ‘tag’ for parking as she is prone to side effects as a result of her cancer.  She was legally parked in a disabled parking slot and returning to her car in Oct 2017, she found it covered in stickers – see here:

I guess that made her very upset.  It makes me upset just looking at these pictures from afar.  Lexi posted her story on social media and on twitter, her tweet went viral and so far, has been liked over 100,000 times and she is heading for 50,000 retweets (shares). Great awareness for invisible illness and the issues of car parking and perceptions. It even made the press – see below:

So, to whoever committed this cruel act – SHAME ON YOU! – you are a selfish and terrible person.

You may also enjoy these similarly related articles:

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

Not every illness is visible – click here

You must be doing OK, you’ve not had Chemotherapy – click here

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – click here

Thanks for reading

Ronny

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

Disclaimer

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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!

 

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

 

PERT

After 7 years of avoiding pancreatic enzyme replacement therapy (PERT), I finally asked for some on a trial basis.  To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs).  I’ve always known I’ve had some digestive issues related to malabsorption. However, I’m not losing weight – this has been stable for some years.  Plus my key vitamin levels (B12 and D) are in range.  However, I’ve been struggling with a lot of bloating issues in the last couple of months, thus the trial.  You know me, I like to research and analyse such things! I’ve actually written about a lot of these issues in my Nutrition series ….. so this is now ‘Article Number 5’.

Crash Course. We eat food, but our digestive system doesn’t absorb food, it absorbs nutrients. Food has to be broken down from things like steak and broccoli into its nutrient pieces: amino acids (from proteins), fatty acids and cholesterol (from fats), and simple sugars (from carbohydrates), as well as vitamins, minerals, and a variety of other plant and animal compounds. Digestive enzymes, primarily produced in the pancreas and small intestine, break down our food into nutrients so that our bodies can absorb them.

Background

Some of the common symptoms of NETs are gas, bloating, cramping and abdominal pain and the root cause of these issues can sometimes be as a result of insufficient ‘digestive’ enzymes.  They are primarily produced in the pancreas (an exocrine function) and the small intestine but also in the saliva glands and the stomach.  This post will focus on pancreas and to a certain extent, the small intestine.  There are actually some key tell-tale signs of a pancreatic enzyme deficiency, such as steatorrhoea which is described as an excess of fat in faeces, the stool may float due to trapped air, the stool can be pale in colour, may be foul-smelling, and you may also notice droplets of oil or a ‘slick’ in the toilet pan.  Steatorrhoea is mainly (but not always) due to malabsorption of fat from the diet and this can actually be caused or made worse by somatostatin analogues which are known to inhibit the supply of pancreatic enzymes. Of course if fat is not being absorbed, then the key nutrients your body needs to function properly might not be either.  The signs from that might not be so noticeable but can be even more problematic over time. Please see Article 1.

Those who have had surgery, in particular, in GI tract/digestive system, are at risk of malabsorption; as are those prescribed somatostatin analogues (Lanreotide/Octreotide) as these drugs can inhibit digestive enzymes, causing or adding to the malabsorption effect.  For those who need to read more, see Article 2.

One way to combat these issues when they are caused by pancreatic insufficiency is with Pancreatic Enzyme Replacement Therapy (PERT) which can mimic the normal digestive process. However, this is not the whole story as there could be numerous reasons for these issues, perhaps even some which are unrelated to NETs. If you are in doubt about whether you suffer from malabsorption and/or any form of digestive enzyme insufficiency, you should consult your doctors.

Pancreatic Enzyme Replacement Therapy

Many NET patients succumb to malabsorption due to pancreatic insufficiency and are prescribed Pancreatic Enzyme Replacement Therapy, or PERT for short.  There are various brands available (e.g. Creon®, Nutrizym®, Pancrease HL® or Pancrex®). Most are in capsule form in various doses.

How does PERT work? Most people experiencing the issues above are going to benefit from a multiple-enzyme replacement which tend to include the key ones such as:

  • protease which breakdown proteins (e.g meat, fish, seafood, dairy, nuts, etc)
  • lipase which break down fats (e.g from many different foods)
  • amylase which breaks down starchy carbohydrates (e.g. potatoes, bread, rice, pasta, cereals, fruits, fibre, etc).

The dose sizes tend to be based on the amount of lipase, i.e. a 25,000 strength would mean 25,000 units of lipase and (normally) a lesser amount of amylase and protease (it is with Creon).  The entire mix of enzymes may be given a name, in my case it’s ‘Pancreatin’. You will be given a number of capsules to be used from your prescribing doctor.

The pancreatic enzyme capsule is swallowed along with food and digests food as they pass through the gut. If your capsules contain an enteric coat or enteric coated granules (delayed release), they should not be affected by stomach acid. The replacement enzymes will help to break down food allowing the nutrients to be absorbed beyond the stomach (i.e. in the small intestine). Do not be alarmed at the dose sizes, a healthy pancreas will release about 720,000 lipase units during every meal!

Frequently Asked Questions (FAQ)

When I first started taking the supplements, I thought of numerous questions, many of which I could not find definitive answers to! Different sites say different (and contradictory) things.  Clearly, you should always consult your prescribing doctor and the medicine patient information leaflet. That said, I found the patient information leaflet which came with the capsules is just not detailed enough for an inquisitive patient such as myself!

I always like to refer to best practice which is why I’ve consulted one of the top NET Dietitians, Tara Whyand of Royal Free London. She agreed to an online Q&A session on 28 Feb 2018.  This took place on my private Facebook group click here or search Facebook for this group “Neuroendocrine Cancer – Ronny Allan’s Group“.  Join, answer some simple questions and then your application will be processed.

The output from the online with with Tara Whyand is below:

Thanks for attending the online event. Here is a tidy summary of the many comments. I hope this is also useful for those who were unable to attend.

  1. Why would I need PERT and are there any tests that can be done to validate this?

“Somatostatin analogues, pancreatic surgery, pancreatitis and cystic fibrosis can cause exocrine pancreatic insufficiency (EPI). This means that the pancreas does not produce enough enzymes to break down food. It results in fatty loose stools called steatorrhoea.

Patients who have exocrine pancreatic insufficiency (EPI) require PERT (pancreatic enzyme replacement therapy) to break down food (fat, protein and carbohydrate). There are many brands of pancreatic enzymes, the most commonly used are Creon and Nutrizyme. Both have different dose levels to choose from.

The fecal elastase test was traditionally used to test the function of the pancreas, although it may not be that useful in NETs. This is because a NET team in Wales found that some NET patients who reported steatorrhoea had a false negative result.

Steatorrhoea may also be a result of bile acid malabsorption and small intestinal bacterial overgrowth which can co-exist and are common especially after surgery. They can both be tested for at a hospital.”

Supplementary Questions:

1a. Would the treatment be different for both EPI and bile acid malabsorption? If not how different?

“Yes BAM requires bile acid sequestrants rather than PERT”.

1b. would this be something you would take in general to help overall digestion and absorption of nutrients?

“No only if you have reasons for EPI to occur”.

  1. PERT dosage. Is there a set dosage for all patients or does it depend on type of NET or surgery? And can I overdose on PERT?

“It depends on what you eat. PERT dose is normally tailored on fat content (the more fat you have, the more enzymes you need), but patients who have had a total pancreatectomy will have to have PERT for all food and drink (apart from water) as carbohydrate and protein needs to be broken down too.”

Supplementary Questions

2a. “What about when taking medication such as Cholesteramine or pills in the morning and evening. Do I need to take it to absorb these?”

“see question 5”.

2b. I had a total pancreatectomy and was told I do not need PERT for fruit and veg?

“there’s carbs in all fruit and veg and often fat and protein too, so no different really.”

  1. Some sources say to take the capsules at the beginning of a meal, some say it’s also at the end of a meal is also OK. How critical is this?

“You must always take the capsules at the beginning of the meal and if the meal goes on longer than ~30 minutes, or there are several courses, you will need to have another capsule/tablet/scoop of enzymes. If you don’t, food will pass by the pancreas undigested and ‘malabsorption occurs. This leads to fatty stools (steatorrhoea), fat soluble vitamin deficiency and weight loss. Unbroken down food can also feed bacteria and you can develop small intestinal bacterial overgrowth as a result.”

Supplementary Questions

3a. so if my oncologist says to take four capsules per meal, then I should take all four at the same time?

“see question 11”

3b. if you have had a total gastrectomy (total removal of the stomach), is there a different procedure for taking PERT? I am on Creon and have heard that perhaps I need to open up the capsules as I can not break down the gelatin casing. Not sure if this is true or not.

“See question 11”

  1. What is a meal? Is it multiple courses, or is there a strategy for each individual course? What about snacks? (i.e. a single biscuit with a cup of tea)

“The standard starting dose for snacks: 22-25,000 units lipase, titrating up when symptoms have not resolved. Most people end up taking 44,000-50,000 for snacks.

For main meals start on 44,000/50,000 and most people will need 66,000-100,000 units lipase/meal for the long term.”

Supplementary Questions:

4a. I have to eat multiple small meals a day (like every 3 hours, so 7 to 8 small meals). Is there a limit on the amount of Creon I can take in a day?

“see question 11”

4b. What is a snack?

“No official definition. Something with a little fat and maybe 50-200kcals.

  1. Are there any problems taking PERT at the same time as other drugs? e.g. I like to take my vitamin supplements with food. And it’s recommended that some drugs be taken with food.

“PERT only breaks down food, but it is important to take your PERT to ensure food and drugs are absorbed. If you do not take you PERT with the meal, it is likely that food and drugs will rush through your bowel without being absorbed. There is no problem taking vitamins and minerals with food and PERT.

Supplementary Questions:

5a. I take a probiotic also, when is best time to take this, before, during or after food?

“Timing doesn’t matter”

  1. I heard PERT is a porcine produce but I’m a vegan? Is there anything else for me?

There are no other recommended products, and you should only have prescription PERT’s. This is for safety and reliability. Other off the shelf enzymes are unlikely to work.

Pigs are not slaughtered for PERT, they are slaughtered for meat and enzymes are a by-product if that makes anyone feel more comfortable with the idea.”

  1. I heard PERT is a porcine produce but my religion does not allow me to eat such produces. Is there anything else for me?

“PERT are only sourced from a pigs pancreas but Jewish and Muslim patients have been granted approval to take the enzymes on medical grounds from their religious leaders because there is no alternative.”

  1. Some doctors are prescribing PPIs along with PERT claiming that they help the PERT do the job. Do you have a view on this and are there any general diet tips to support the job of PERT without resorting to other drugs?

“Yes if you have had a whipples operation or you have acid reflux you must take an anti-acid (proton-pump inhibitor-PPI) drug to reduce the acid level. If left untreated it can cause ulcers, and when they bleed it can sometimes lead to a life threatening situation. PERT are gastro-resistant-they do not work in too high an acid environment. Sometimes a PPI / H2 blocker can decrease the acid level and allow the PERT to work better. There is no other reliable way of reducing stomach acid.

Note: Ronny Allan input that there is information published about the over-subscribing of PPI for long term use. Additionally that some NET specialists are suggesting a preference for H2 Blockers rather than PPI for NET Patients. H2 Receptor Blockers include Nizatidine (Axid), Famotidine (Pepcid, Pepcid AC), Cimetidine (Tagamet, Tagamet HB), Ranitidine (Zantac). The exceptions would be for PPI therapy necessary for Barrett’s Esophagus and Zollinger Ellison Syndrome (Gastrinoma). Details to follow.

Supplementary Questions:

8a. I had a whipples two and a half years ago and have recently stopped taking omperazole as I didn’t seem to need them. Do you think I should still be taking something to reduce acid level anyway?

“yep think you should be on Ranitadine or a PPI long term.”

8b. Is it possible to suffer from excess acid without even knowing it? I also take probiotics, is it possible they could be minimising any excess acid? Also, I seem to be able to eat whatever I want without consequence but am worried now in case I am doing wrong and storing up trouble for myself.

yes you can have silent reflux but after a total pancreatectomy you needs lots of adjustments and insulin dosing advice.”

  1. How will I know the PERT is working for me? And are there any tests to validate this?

“You will know if your PERT is working well if your symptoms improve – i.e. you get normal (mid brown and formed) stools.

Patients taking enough PERT will not become fat soluble vitamin deficient or lose weight in the long term.

You could do a fecal elastase test (if stools are not liquid), but this is not a very reliable test especially for patients with NETs.

If symptoms do not resolve entirely, there may be a co-existing cause of malabsorption e.g. bile acid malabsorption or small intestinal bacterial overgrowth.”

Supplementary Questions:

9a. With regards to Question 9, how would you know if you have bile acid malabsorption or SIBO? Can you be tested for those?

“If PERT doesn’t resolve things, SIBO testing is another thing to look at using a lactulose drink and hydrogen breath test. If the NET is in the terminal ileum, bile acid malabsorption (BAM) is likely. The test is a SeHCAT scan and treatment usually Questran or Colesevelam.

  1. If I need to stop taking PERT, do I just stop or do I need to taper off consumption over time?

“No, just stop. But only do so if it has caused a side effect and report the reaction to the doctor and pharmaceutical company. If you don’t think they are working, speak with a specialist Dietitian and you may need a PPI or H2 blocker or change brand/dose.”

  1. If someone has had a total gastrectomy, can they take Creon? If so, do they need to open up the pill to remove the gelatin to help the enzymes to work?

“They are to be taken as normally directed. You can open capsules but only into an acidic fruit juice (a pH of 4.5 or below) and swallow immediately. It could be argued that PERT will work most easily in patients having a gastrectomy as you cannot get too high a stomach acid level without stomach P-cells. By the way, shouldn’t be any gelatin in the prescribed PERT”

Supplementary Questions:

11a. Are there any problems with taking too much in a day? I have to have 7 to 8 meals (minimum). I am losing weight. Take with every snack and meal?

“You can overdose – for Creon this is 6000 units lipase per kg of body weight. If you are still losing weight, PERT is not working or something else is the cause of malabsorption”

  1. SUPPLEMENTARY QUESTIONS AT THE END

12A. My steatorrhoea only occurs once/twice a month. Is PERT indicated if steatorrhoea is not chronic?

“Yes, probably need to take all month as steatorrhoea is only a sign of extreme malabsorption, small amounts of malabsorption aren’t noticeable visibly but will reflect in weight and blood vitamin levels.”

12B. I do not need Creon as I am a Lung NET; although I have had my gall bladder removed.

“May need PERT if on somatostatin analogues. Some people take a bile acid sequestrants after gall bladder removal. PERT won’t work for that.”

Summary

I’ve always known about issues such as steatorrhoea and vitamin/mineral deficiency. My weight is fine but very happy to trial PERT to see the differences. I made a mistake of starting the capsules on Dec 23rd just before Christmas – it made for an interesting week!  Early days so far but I’m getting used to taking them (and remembering to take them ….). Still seeing signs of steatorrhoea but am tracking this against diet,  No change to stool frequency. I would appear to be belching more though!  I will keep this post live as I learn more.

You may wish to see the output from an online chat I carried out, the link is above.

You may also enjoy these articles:

“Nutrition Article 1 – Vitamin/Mineral Risks”click here.

“Nutrition Article 2 – GI Malabsorption”click here.

“Nutrition Article 3 – SIBO/Probiotics”click here

“Nutrition Article 4 – Food for Thought – amines etc”click here

Post publishing edit:  “I feel like I now take food with my medicine” 🙂

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!