Ronny Allan – Living with Neuroendocrine Cancer Blog – A MILLION views

I’m totally astonished to have been able to accumulate 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 thought for one minute I would still be doing it today reaching one million hits and accumulating over 14,000 followers across all my social media sites.  This is an update of an article from 7 March 2018 when I passed the 500,000 mark – so that is a staggering half a million views in 15 months to double that tally.  All thanks to you!

 

 

 

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

People often ask me how I’ve been able to build up my sites and it’s a difficult question because I’m not totally sure what happened!  I just put my head down and attacked the task in my usual tenacious way – so I guess that’s part of my sub-conscious and inbuilt strategy.  I did write an article about my blog journey for WEGO Health for those interested – read here

My blog is pretty central to my activities and through this medium and some others, I’ve really invented my own brand of Neuroendocrine Cancer awareness without following the crowd. I pride myself on my independence which allows me the freedom of movement I need. So far I’ve managed to win two international awards breaking through into new areas for awareness.  In 2016, I won the WEGO Health Best in Show Community followed by Best in Show Blog in 2018, and also made the finalists in several others.  I might take a break from the 2019 awards!

Other Advocate Activities

I’ve also spoken at many events and to pharma only audiences including Ipsen Global Paris, Ipsen UK, Ipsen Germany, Ono Pharma UK, Royal Marsden Hospital, Wales NET Patient Foundation, PLANETS Southampton, Eye for Pharma London 2018, EUHIC Berlin 2018, Society and College of Radiographers (due Oct 2019). 

I’m also a contributor to Cure Magazine although only two articles published to date (see my signature block below)

Other invitations include the making of an education video for Lex Pharma, helping to create and featured in Ipsen‘s patient support website Living with NETs, a photo shoot for a Macmillan Cancer internet campaign, a photo and video shoot for Ipsen as a member of the European Pharmaceutical Industries and Associations (EFPIA) (link to follow when published).  I’ve also been featured and/or mentioned in numerous other locations – read my blog site home page to read more.

Board Membership

I’m a member of the following boards:

2019 WEGO Health Patient Advisory Boardclick here to see my WEGO profile.

2.  ONO Pharma UK Patient Advisory Board (to follow if publishable)

3. Multi-Med Inc Strategic Advisory Boardclick here.

My main sites are here:

Blog – ronnyallan.NETClick here.

Twitter – @ronnyallan1 and @netcancerblog

Facebook – I have numerous accounts:

      • NET Cancer Blog (my main site with around 8000 followers as at June 2019) – 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

Private Facebook Group (Educational focus) – I also have a private Facebook group which the fastest growing group in the NET community  – click here to join (don’t forget to answer the questions).

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.

Patients Included

Everything I do is about patients and my site is accredited as “Patients Included”. That means everything has to have patient input.

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

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

Thanks for reading

Ronny

Thanks for listening

 

Neuroendocrine Cancer: 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.  Some are not showing anything on any scan but in certain cases, it can be likened to finding a needle in a haystack.

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 (say) 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”.

You can hear two NET specialists talking about the issues surrounding the diagnostics 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!

patients included

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


Edit 10 Jan 2019: RadioMedix and Curium Announce FDA Fast Track Designation For 64Cu-Dotatate.  Read more by clicking here.

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

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My Diagnosis and Treatment History

Most Popular Posts

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Read my Cure Magazine contributions

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

patients included

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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 in India.

What happens next?

Update on 13 Feb 2019.  He is back in India – no other information is available.

Update on 1st April 2019.  He is going back to work.

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

I now take food with my medicine!


vitamin-supplements_650x450-002

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 recurrence 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 between 6 and 12 per day depending on what I eat.  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.  Read more here.
  • 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.  Many people who do not live in sunny countries are probably deficient or borderline already.
  • 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).

You should be clear why you take supplements and try to consult with a specialist or dietitian for advice.

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

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

Radioimmunotherapy

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

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

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

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

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

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

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

Related articles:

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

Funding grant from NIH for Phase 2 – click here

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

Areva Med Website – click here

RadioMedix Inc Website – click here

You may also enjoy my articles:

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

Thanks for reading

Ronny

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

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

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Living with Neuroendocrine Cancer – the 7 Year Itch

7 year itch

I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery.  It had taken 12 days for me to feel strong enough to venture onto social media with a simple message “I’m feeling perkier”.  For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed.  I guess I met some of these descriptors most of the time! I had gotten through the worst and the light at the end of the tunnel was now a faint glimmer.

I’ve recently had a ton of ‘7 years ago cancerversaries’ and there’s still a few to go! I’m currently being reminded of an issue that started just after my initial treatment and by coincidence (perhaps?) the commencement of my Lanreotide (Somatuline Autogel).  Itching!  However, for me, it’s mainly the right leg below the knee (go figure!). Much less frequently on my arms and sides.  I know many people have the same issue but no-one ever seems to find out why – I guess it’s that Neuroendocrine jigsaw thing again?

Initially, I put the issue down to Lanreotide, as this is mentioned in the side effect list on the drug instructions.  The initial connection was made because it seemed to be happening immediately after my monthly ‘dart’.  A really annoying itch mostly around my ankles and which had to be scratched!  An application of a general emollient cream for a few days seemed to do the trick and after a week it was gone (until the next injection …..). However, after a few years, I sensed the issue was drifting away from the injection cycle and adopting a different and more random pattern.  I’m also suspicious of a nutritional connection and checking my article Nutrition for NETs -Vitamins and Mineral Challenges, I can see Vit B3 (Niacin) and Vit E are mentioned in regards skin issues.  I’d be confused if this was an issue today as I now take plenty supplements to offset GI malabsorption.  However, I probably wasn’t taking sufficient between surgery and 2013 as I lacked the knowledge to do so at the time.  So nutritional deficiency remains a possibility or at least an added complication.  The most recent outbreak has unusually gone on for the last 4 weeks.

I also seem to have had an eczema type issue in my right ear and mild rosacea for more than 7 years (pre diagnosis).  As you can imagine my ‘inner detective’ is working overtime!  One thing is clear – this itchy leg issue has plagued me for 7 years.

I know that many people have real issues with rashes and skin itching, I’ve seen this so many times with some people describing it as severe.  Clearly when this is the case, a doctor’s intervention is generally required.  I’ve seen the following connections to NETs and skin issues:

NETwork with Ronny © – Community Newsletter OCTOBER 2017

Hi NETworkers!

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

What’s in the NET News

The following news items may be of interest:

  The huge (but expected) news that Novartis Novartis (manufacturers of Octreotide) is purchasing Advanced Accelerator Applications (AAA) (manufacturers of Lutathera Lu-177 (as used in PRRT)). This is a significant acquisition and should benefit the NET community given the size of Novartis and the potential of PRRT worldwide. It will be interesting to see if this has an impact on the UK approval

Read more here.

  I wasn’t at NANETS but did check most of the output consolidated into this post – Read more here
  GA-68 PET (NETSPOT) continues to roll out across the USA, see CCFs latest list by clicking here.
Made it to 3 finals in the WEGO Health awards, I posted about this  here.

Blog Site?  

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

 Neuroendocrine Cancer – Trick or Treat.  This ‘themed’ post generated a huge amount of sharing, breaking all previous records.  See more in the newsletter.
  A summary of NET stuff from NANETS 2017
 “You’re Cured” – Topical and controversial in NETs. My opinion.
Weight can be an issue in NETs.  It did actually trigger my diagnosis.
The shock effect never wears off.  My private messages are full of disturbing stories, not just about diagnostic issues but support and care received.  A new campaign.
Genetics and NETs.
My first article for Cure Magazine “It’s not all about me” 

 

Other Activity

October was a busier month in terms of blogging despite several personal challenges and external projects on the go.  Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time.  I still managed to break 2 records in October, mainly due to my Halloween themed post on 31st.  The biggest amount of view in any one day had stood since Jan 2017 and was totally smashed, as was the best month too.   Thank you all so much for the support.

Please join my 2017 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 I cannot accept telephone calls on a one to one basis.  Also, 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.

Awareness Activity in October 2017

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

  • 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:
“Cancer isn’t all about me”
“Poker Face or Cancer Card”
  • Twitter. I took part in a WEGO Health patient leader chat on twitter where I was able to contribute to some general cancer questions (subject chronic illnesses).  It was attended by many patient advocates representing many different conditions. The taking part in these activities is time-consuming and mentally hard work but it does allow me to grow as a general patient advocate and to occasionally mention “Neuroendocrine Cancer” spreads awareness to new audiences!  A summary of the conversation can be found here.
  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  In Oct, I tweeted 218 times on my personal account which lead to almost 89,000 views.  I was mentioned 160 times by other tweeters and gained 49 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. 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.  Currently 374 subscribers – up 11% on last month.

  • 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!

  • Macmillan Cancer Support.  I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum.  In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities.   This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation.  They have recently agreed to feature NETs on 10 Nov 17 and I’m writing an article in preparation.
that’s me in the centre

Speaking Engagements

  • I was delighted to speak to the South Wales NET patient group (sponsored by NET Patient Foundation).  Here’s some pictures of Chris and I with the group and the local NET Specialist. Dr Mo Khan is setting up a brand new NET Service in Wales – great news for this group.
Left to right: Nikie Jervis (Nurse from NET Patient Forum), Sally Jenkins NET Cardiff, me, Yolande Mears NET Swansea, Chris (my wife)
Dr Mohid Khan – NET Specialist Wales – great supporter of my blog and NET patients Quality of Life
  • On 16 November, subject to contract, I’ve been invited to speak for around an 45 minutes at an Ipsen sponsored NET Nurse event in Birmingham. Tough gig!  Post to follow if allowed by contractual arrangements.

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently.  I’m currently in a pool of patients who may be featured in a UK national, fingers crossed.  Writing an article for Macmillan on NET Cancer Day.

Social Media and Stats

Blog Milestone.  In October, I accelerated past 400,000 views! Thank you all so much Keep sharing!  On track for half a million by Easter 2018.

Facebook Milestone.  I would love to achieve 6000 followers by the end of 2017 but this will be a challenge.  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.

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 230 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

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

Figures

  • Facebook 5337.  This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
  • Twitter4202 / 3252 Follow me here @RonnyAllan1 / @NETCancerBlog

 

Neuroendocrine Cancer – no treats, just tricks
Neuroendocrine Cancer – Tumour Markers and Hormone Levels 
Living with Neuroendocrine Cancer – Home Page
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had
Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor
Background to my Diagnosis and Treatment

WOW!  – that’s 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 October.  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!

 

Weight – the NET Effect

Weight – The NET Effect

Firstly, let me say that I have no intention of advising you how to lose or gain weight!  Rather, I’d like to discuss what factors might be involved and why people with NETs might lose or gain weight either at diagnosis or after treatment.  Clearly I can talk freely about my own experience and associated weight issues. If nothing else, it might help some in thinking about what is causing their own weight issues.

I wrote a patient story for an organisation over 3 years ago and it started with the words  “Did you mean to lose weight”.  Those were actually the words a nurse said to me after I nonchalantly told her I thought I’d lost some weight (….about half a stone).  I answered the question with “no” and this response triggered a sequence of events that led to all the stories in all the posts in this blog (i.e. my diagnosis).

I annoyingly can’t remember at which point I started to lose the weight but I was initially reported to have Iron Deficiency Anemia due to a low hemoglobin result and my subsequent iron test (Serum Ferritin) was also low and out of normal range.  This, combined with the weight loss, the GP was spot on by referring me to a clinic.  The sequence of events during the referral led to a diagnosis of metastatic NETs (Small Intestine Primary). If I had been a betting man, I would have put money on my GP thinking “Colorectal Cancer”.  So my adage “If your doctors don’t suspect something, they won’t detect anything” applies.

I can also tell you that I weigh myself most days at the same time using the same scales. Weight loss or gain needs to be recorded.  Clearly 2 or 3 pounds is nothing to worry about, I found you could put on or lose that amount in a day, depending on time of weighing and food intake. I’m looking for downwards or upwards trends of 7lbs or more (3kg).

Why did I lose weight?

The drop from 12st to 11st was clearly something to do with the anemia symptom (the NETs). But after diagnosis, I had major surgery about 10 weeks later.  When I left the hospital after my 19 day stay, I was a whole stone lighter (14 lbs or 6.3 kg).  I guess 3 feet of intestine, the cecum, an ascending colon, a bit of a transverse colon together with an army of lymph nodes and other abdominal ‘gubbins’ actually weighs a few pounds.

However, add the gradual introduction of foods to alleviate pressure on the ‘new plumbing’, and this is also going to have an effect on weight.  I remember my Oncologist after the surgery saying to use full fat milk – the context is lost in memory but I guess he was trying to help me put weight back on.  I also vividly remember many of my clothes not fitting me after this surgery. In fact, since 2010, I’ve actually dropped 2 trouser sizes and one shirt/jumper size.  I did spend a lot of time in the toilet over the coming months, so I guess that also had an impact!  However, what I wasn’t aware of was the side effect of my surgery.  I started to put on some weight in time for my next big surgery – a liver resection.  The average adult liver weighs 1.5 kg so I lost another 1 kg in one day based on a 66% liver resection.

However, what was also going on was something that took me a while to figure out – malabsorption and vitamin/mineral deficiency. My new ‘plumbing’ wasn’t really as efficient as my old one, so the malabsorption. issues caused by a lack of terminal ileum was slowly starting to have an effect. The commencement of Lanreotide in Dec 2010 added to this complication. That knowledge led me to understand some of the more esoteric nutritional issues that can have a big effect on NET patients and actually lead to a host of side effects that might be confused with one of the several NET syndromes.  What it also confirmed to me was that I could still eat foods I enjoy without worrying too much about the effect on my remnant tumours or the threat of a recurrence of my carcinoid syndrome, something I was experiencing prior to and after diagnosis.

Armed with the ‘consequences of NETs’ knowledge, I did eventually adjust my diet and my weight has now ‘flat-lined’ at around 10 st 7 lbs (give or take 1 or 2 lbs fluctuation).  Amazingly, the same weight I was when I left hospital after major surgery, looking thin and gaunt and not very well at all!  The difference to day is that I have adapted to my new weight and look fit and healthy.

I actually lost another half a stone (7 lbs or 3.5 kg) in 2014 whilst training for an 84 mile charity walk – many commented that I looked thin and gaunt despite being extremely fit from all the training. Perspectives.  It took several months to put the weight back on but at least I knew what had caused the loss and then subsequent gain.

I don’t have any appetite issues although I try to avoid big meals due to a shorter gut, so I snack more.  With the exception of the 4 months of intense training for the 84 mile hike, I cannot seem to lose or gain weight.  As my current weight is bang in the middle of the BMI green zone (healthy), I’m content.

Why do NET patients lose weight?

That’s a tricky one but any authoritative resource will confirm fairly obvious things such as (but not limited to) loss of appetite and side effects of cancer treatments.  NETs can be complex so I resorted to researching the ISI Book on NETs, a favourite resource of mine.  I wanted to check out any specific mentions of weight and NETs whether at diagnosis or beyond. Here’s some of the things I found out:

Carcinoid Syndrome.  Weight loss is listed but not as high a percentage as I thought – although it tends to be tied into those affected most with diarrhea.

Gastrinoma/Zollinger-Ellison Syndrome.  Up to half of these patients will have weight loss at diagnosis.

Glucagonoma.  90% will have weight loss.

Pheochromocytoma.   Weight loss is usual.

Somatostatinoma.  Weight loss in one-third of pancreatic cases and one-fifth in intestinal cases.

VIPoma.  Weight loss is usual.

MEN Syndromes.  One of the presentational symptoms can be weight loss.

Secondary Effects of NETs.

Many NETs can result in diabetes (particularly certain pNETs) and as somatostatin analogues can inhibit insulin, it could push those at borderline levels into formal diabetic levels (including any type of NET using long term somatostatin analogues).  In people with diabetes, insufficient insulin prevents the body from getting glucose from the blood into the body’s cells to use as energy. When this occurs, the body starts burning fat and muscle for energy, causing a reduction in overall body weight. 

Hypothyroidism is another potential issue. 

It must be emphasised that there will always be exceptions and the above will not apply to every single patient with one of the above.

Suggested reading for putting weight back after surgery

An excellent reference document produced by Royal Free Hospital, authored by Tara Whyand and distributed via the NET Patient Foundation – hints and tips for different types of NET by anatomy:  click here

What about weight gain?

You always associate weight loss with cancer patients but there are some types of NETs and associated syndromes which might actually cause weight gain.  Here’s what I found from ISI and other sources (as mentioned):

Cushing’s Syndrome.  Centripetal weight gain is mentioned.  (Centripetal – tends to the centre of the body).  I also noted that Cushing’s Syndrome tends to be much more prevalent in females. Cushing’s syndrome comprises the signs and symptoms caused by excessive amounts of the hormone cortisol (hypercortisolism) or by an overdosage of drugs known as glucocorticoids.

Insulinoma. Weight gain occurs in around 40% of cases, because patients may eat frequently to avoid symptoms.  However, according to an Insulinoma support group site, I did note that after treatment (some stability), things can improve.

Again, it must be emphasised that there will always be exceptions and the above will not apply to every single patient with one of the above.  As in weight loss scenarios, the Secondary Effects of NETs can have an effect.  Hypothyroidism is another potential issue and weight gain is a listed symptom.  I just been diagnosed with hypothyroidism this year but I was not gaining weight!  

The NETs Jigsaw

Like anything in NETs, things can get complex.  So it is entirely possible that weight loss or weight gain is directly caused by NETs, can be caused by side effects/secondary effects of treatment, and it’s also possible that it could be something unrelated to NETs (Dr Liu “Even NET patients get regular illnesses“).  I guess some people might have a good idea of the reason for theirs – my initial weight loss was without doubt caused by the cancer and the post diagnostic issues caused by the consequences of the cancer.

Summary

I guess that weight loss or weight gain can be a worry. I also suspect that people might be happy to lose or gain weight if they were under/over weight before diagnosis (every cloud etc).  However, if you are progressively losing weight, I encourage you to seek advice soonest or ask to see a dietician (preferably one who understands NETs).

Edit:  I changed my blood thinner in May 2017 and lost 2kg (4 pounds) after 6 months.

Edit: I started Creon at the beginning of 2018 (read about this here) and almost immediately put on 2kg (4 pounds) to offset the 2kg loss from 6 months prior.  However, no real change after 3 months of Creon (March 2018).

Edit: I was recently diagnosed with Hypothyroidism, one of the symptoms can be weight gain.  Clearly that has not applied to me.  Hyperthyroidism is the opposite condition where weight loss is a symptom.

Edit: Due to a bad chest infection in June 2018 and due to the consequences of the effects of that illness and most likely the treatments undergone, I have dropped three quarters of a stone (~10lbs).  My lightest weight for over 30 years.   To me that is a significant loss of weight in such a short space of time. Currently trying to put it back on again – I need the weight!

Edit: 4 Sep 2018. After the 10lbs (~4.5kg) loss following the chest infection, people who see me regularly have noticed the visible difference. I’m still struggling to get back beyond 10st after 2 months. I’m monitoring this really closely.

Edit: 28 Nov 2018. I’m back at 10st after increasing my dosage of Creon.

Edit: 10 Jan 2019.  I’m back at 10st 3lbs, my approximate weight before the chest infection.  It’s taken 7 months and the recent acceleration coincides with Creon dose increase.

Edit 7th Feb 2019.  Changed from Creon to Nutrizym.

Edit: 17 Mar 2019.  It appears my trouser waist size is back to 32″.  Is the use of Pancreatic Enzymes making me eat more, or getting more nutrients through, or making me eat food which makes me put on weight?

For those wishing to see the output from an online discussion with Tara Whyand on the subject of ‘Weight’ issues for NET patients – please see this link inside my closed Facebook group.

weight online chat
Click the Link to see the online event output

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!

patients included

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The shock effect never wears off

the shock effect never wears off

Patient stories are key to any awareness campaign.  Nothing like a human being standing up and letting you know about their experience.  Many are positive examples of how they are overcoming their trials and tribulations, others tell stories of a struggle. They all have different styles, some are the ‘kick ass’ type stories, some are just thankful, some are reflective – all of them are perfectly acceptable. I normally like to place myself somewhere in the middle with phrases like “I’m still here“, although I can veer left and right when the mood takes me!

Because of my social media footprint, I get a lot of private messages from people across the globe. Many are from people who have no wish to go public and that’s fine. Many are from people who value my opinion and that’s humbling. On forums, you can get 50 answers (all well meaning ones), with me you normally only get one (even if it’s a “I don’t know”).  Most are fairly easy to answer, just a link to something or asking for one of my articles they can’t seem to find.  Some are a bit trickier but I get there in the end.  Some are pretty worrying and really difficult to answer.  And nearly all of them amplify something we already know ……. despite some tremendous medical advances, there’s still a lot of unmet needs for Neuroendocrine Cancer patients, in particular access to NET specialists, access to the best and latest proven treatments and follow-up support for those affected by their experience (physical and mental). I’m talking in a global sense including countries perceived to be advanced in medical terms.

Take Patient A for example.  This patient has a classic well differentiated Small Intestinal NET (Si NET) with lymph node metastasis.  That resulted in fairly complex abdominal surgery that many of us will have had (including myself). For the past year, this patient has struggled with no follow on support, no dietary advice and has been left alone. This patient told me he is actually receiving his follow on advice from my blog site. This patient is also struggling on the emotional side because people say he looks rather well and have commented that he must have been wrongly diagnosed but at least is now “cured“.

Patient ‘B’ is similar.  This patient has had surgery (the surgeon got everything apparently ….) but has been declared non-syndromic on the basis there is no diarrhea.  However, there is flushing, joint paint, general abdominal issues, weight loss, headaches, fatigue, dehydration and chronic constipation.  It took this patient 6 months to find out about a local NET advocate organisation and 10 months to find out there was access to a dietitian.

Patient ‘C’ is worrying.  In this example I was contacted and asked about surveillance intervals as it was noticed I was having regular scans. What I found was someone who had a metastatic midgut NET and not had any surveillance for 3 years (including tumour/hormone marker checks and Echocardiograms).  This is despite an advanced healthcare system and oodles of availability. This patient is now seeing a NET specialist.

Patient ‘D’ had a horrendous experience.  This patient was treated as a bowel cancer case when they had a low-grade classic Si NET …… surgery and then classic bowel adenocarcinoma chemo. Now, it might be that was the only treatment modality available in this patient’s country but it’s a worrying example of the extent of the unmet needs for NET patients in the country concerned.

Patient E is so shocking, I wrote an entire article about this case.  Click here to read it.

Patient F has a similar story to patient E.  Click here to read it.

I could go on with many other examples and I might expand this post downstream.

One thing is very clear to me, we need a new paradigm in international advocacy and we need to start focusing more on these support issues.  As the number of people living with cancer rises, the requirement for post diagnostic support also rises.  Even those who are ‘stable’ need support.  One thing is for sure, the shock effect of what people tell me never wears off because I know there are more shocking stories still to hear.

 

Genetics and Neuroendocrine Tumors


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

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

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

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

How will I know if I am affected? 

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

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

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

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

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

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

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

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

1.  Gastroenteropancreatic (GEP NETs)

2.  Bronchial/Thymic NETs

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

4.  Medullary Thyroid Carcinoma

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

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

Thanks for reading

Ronny

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

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

patients included

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Cancer Isn’t All About Me

As featured by Cure Magazine
It’s about others too

Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it’s really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight.

Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is on me because these things are necessary to keep me alive for as long as possible and also because I live with the consequences of cancer and its treatment which provides further challenges. A good quality of life is not only a motivator for change, good planning and constant surveillance, but it’s also hard work and has an additional impact on the whole family. It means all activities including work, holidays, days out, social activities and, even the simple act of eating, might all need to be organized around me due to the vagaries of my condition. It will never stop, it will never end and it will always be about me!

This has gone on since 2010.  “Cancerversaries” are on the calendar alongside birthdays and wedding anniversaries. Tumor marker tests and scans are reviewed twice yearly so the relentless attention continues, often peaking at these test milestones and worrying moments in between. The detailed analysis of unusual pain or other disturbances are documented. The attention is on me.

Then, a couple of years ago, my wife finds a lump. The local doctor investigates and refers her for a mammogram. The mammogram check leads to an ultrasound which then leads to a biopsy of some fibrous tissue. We have a two-week wait before the all clear is given but the worry doesn’t immediately dissipate as another check was scheduled for three months (done, no issues).  The following check 6 months after on 7 Aug 2018 is also no change.   Hang on … this is not about me!

I suddenly realised it shouldn’t be all about me, it’s about other people too.  It always has been, I just got wrapped up in my own issues.  There is nothing in the rule book that allows cancer or other illnesses to be limited to a single family member. Cancer doesn’t really care how many in your household already have the disease – anyone is a target. It’s bad enough having one cancer patient in the house without another cropping up. One thing is for sure, when it comes to a cancer diagnosis in the family, I really want it to be all about me.

Thanks for reading

Ronny

 

Postscript:  Very excited to share my first article published in CURE magazine. This is a real story about recent events involving my own family. As a long-term cancer patient, it can seem like it’s always about ‘me’ and then something happens which changes that perception. It’s actually about others too, and always has been. If you want to talk about something similar in your life, please share with others in your comments below or  message me. 

This is the beginning of a new phase in my activities and another opportunity to spread awareness of Neuroendocrine Cancer to new audiences, something I promised I would do.  I hope you will support my first contribution to an exciting organisation brand.

It would be great if you would take the time to read the article directly on the Cure site here, and any likes, comments and sharing would be appreciated. 

The article can be found here

caricture

You may also enjoy my second Cure Magazine article “Poker Face or Cancer Card”

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is September 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).

NET News

The following news items may be of interest:

 
  • The European Commission (EC) approved Lu-177 Lutathera (PRRT) on 28 Sep.  This is the first time the drug has ever been approved, despite being in use for  over 10 years.  In USA, the FDA gave a date of 28 Jan 2018 for its decision to approve or not.  Read more here.
 
  • The European Commission approved the use of XERMELO (telotristat ethyl) for use in Carcinoid Syndrome diarrhea not adequately controlled by somatostatin analogues. Read more here.
 
  • The US FDA approved an add-on indication for Lanreotide (Somatuline) for treatment of carcinoid syndrome, adding when used, it reduces the frequency of short-acting somatostatin analogue rescue therapy (….. ergo Octreotide).  Read more here.
 
  • GA-68 PET (NETSPOT) continues to roll out across the USA, see CCFs latest list by clicking here.

 

 
  • The WEGO Health Finalists were announced on 25 Sep and I’m through to the finals in all 3 awards which you nominated me for. Many thanks for the support!  I posted this info here.

Blog Site?  

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

 
 
 
  • The Invisible NET Patient Population.  Centred on the issue of a cohort of as yet undiagnosed people with NETs; or have been labelled with another cancer; or have been told their cancer is benign and therefor not recorded.
 
  • The WEGO Health Finalists were announced on 25 Sep and I’m through to the finals in all 3 awards which you nominated me for. Many thanks for the support!  I posted this info here.

 Other Activity

September was a slower month in ‘new’ blogging terms mainly due to personal activities (holiday) and the consequences of being ‘contactable’ by a large internet footprint! Striking a balance remains difficult, I’m keen to support and advocate but as a patient, I also need my own time.  I’m currently seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients (more on this later) – my strategy is constantly under review.  However, despite a low month for brand new blogs, I still managed to break through 20,000 views for the 4th month in a row…….. Thank you all so much for the support.

Please join my 2017 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 I cannot accept telephone calls on a one to one basis.  Also, 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.

Awareness Activity in September 2017

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

  • Article features.  I was featured in a well shared and positive article entitled A revolution in the treatment of Neuroendocrine Tumors. A very positive look at the new treatments coming through. I didn’t agree with some of the content but ‘hey ho’ I cannot control what others write.  You can check out the article by clicking here.
  • Twitter.
    • I took part in a patient chat on twitter where I was able to contribute to some general cancer questions.  It was attended by many patient advocates representing many different conditions. The taking part in these activities is time-consuming and hard work but it does allow me to grow as a general patient advocate and to occasionally mention “Neuroendocrine Cancer” spreads awareness to new audiences.  A summary of the conversation can be found here.
    • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  In Sept, I tweeted 109 times on my personal account which lead to almost 75,000 views.  I was mentioned 78 times by other tweeters and gained 68 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. 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.  Currently 336 subscribers – up 12% on last month.

  • 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!

  • Macmillan Cancer Support.  I’m proud to be a ‘Voice’ and ‘Community Champion’ on the Macmillan Cancer Support Forum.  In addition I help ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients – it’s a community of communities.  I’ll be reporting more on this in the coming weeks.  This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation.  On August 30th, one of my blogs made their “top picks” generating some NET awareness – check out Living with Cancer – 6 tips for conquering fear They have recently agreed to feature NETs on 10 Nov 17.
that’s me in the centre
  • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read.  Cure Magazine has a readership of 1 million.  Click here to read more.

Speaking Engagements

  • On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance)  Things are starting to happen in this area and I already know their NET Specialist Dr Mo Khan who is working hard on behalf of patients.  I’m really looking forward to visiting and talking to this group.

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently.  I’m currently in a pool of patients who may be featured in a UK national, fingers crossed.

Social Media and Stats

Blog Milestone.  In September, I’m very close to 380,000 views! Thank you all so much Keep sharing! On track for 400,000 by end of the October.

Facebook Milestone.  I would love to achieve 6000 followers by the end of 2017 but this will be a challenge.  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.

Also check out my sister Facebook sites here (click on ‘Like’)

These are fallback  sites to counter the Facebook algorithm whereby you may not see all my posts on the main site:

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

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

Figures

  • Facebook 5220.  This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
  • Twitter4153 / 3195 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 379,320
  • Blog with most views: 12761 – The Human Anatomy of Neuroendocrine Cancer 
  • Most blog views in one day:  2043 on 15 January 2017.  Why the spike? ….. The Human Anatomy of Neuroendocrine Cancer” 
  • Most blog views in one week: 7538 in July 2017.
  • Most blog views in one month: 24142 in July 2017.  Why the spike? … these blogs here:
Home page / Archives More stats 2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor More stats 1,253
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 985
I’m still here More stats 869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption More stats 846
Living with Neuroendocrine Cancer – Home Page More stats 824
Ignore this post about Neuroendocrine Cancer More stats 763
The Human Anatomy of Neuroendocrine Cancer More stats 759

WOW!  – that’s 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 September.  Onwards and upwards!

Thanks for reading

Ronny

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

Disclaimer

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!

community_titled_transparent_2013-10-22

NETwork with Ronny © – Community Newsletter AUGUST 2017

background scene from my Instagram account – to see more check out the newsletter. Photo credit to Nick Lucas

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is August 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).

NET News

The following news items may be of interest:

  • PRRT takes a step forward to being formally approved in USA. FDA acknowledges receipt of revised application for approval.  Click here.
  • However, in UK, there is a threat that PRRT won’t be approved despite a positive recommendation by the scientific committee of the European Medicines Agency (EMA).  Advanced Accelerator Applications (AAA), the manufacturers of Lu-177 Lutathera for use on PRRT, has had to respond to the UK’s drug approver NICE’s negative recommendation.  Read more here.
  • GA-68 PET (NETSPOT) is still rolling out across the USA, see CCFs latest list by clicking here.
  • Ipsen launches the Brazilian version of ‘Living with NETs’ website.  Click here.  (See the English language version – click here).

What’s happening on my Blog Site?  

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

  • The Invisible NET Patient Population.  My latest published blog and received some great viewing figures (and this continues).  Controversial for some but backed up by facts.
  • NETs – not as rare as you think. An older post with some tweaks.  Again, controversial for some but backed up by facts.
  • Carcinoid vs Neuroendocrine – One of my most controversial posts – this is an older post which previously had an element of sitting on the fence. I jumped off the fence following some further research and period of reflection.  I was happy with some of the positive comments I subsequently received on this post.
  • Steve Jobs.  An updated version with some new research timelines added.  This post continues to receive hits daily even when I’m not sharing.  Most of the hits are from people searching and find my article online, an indication of the interest Steve Jobs still has today.  And many of the hits are NEW audiences.
  • NETwork with Ronny © – Community Newsletter JULY 2017.  My July 2017 newsletter ICYMI.
  • Your favourite posts.  All posts with viewing figures above 2000.

Misc Blog Stuff

  • There’s a lot of chatter about use of the word ‘fight’ in cancer parlance but many people are misrepresenting the word’s multiple meanings as per the most eminent English language dictionaries.  As for me, I’m ‘sticking to my guns’ on the subject.
  • I got some great comments on my monthly Lanreotide ‘butt dart’ post.  Feel free to add questions.  I may know some of the answers and cannot promise answers from Ipsen due to their regulatory arrangements but I will try!  Check out the discussion here …… ‘click here’.
  • My notification about the Ipsen HomeZone (or equivalent services within your own country) got an interesting response.  Since then many others have taken advantage by contacting Ipsen or their specialist asking about the service.  This has also led to feedback about the similar schemes from Novartis for Octreotide.  I’m happy that my post has provided publicity to services which help patients.  Read my post At Home with Lanreotide by clicking here.

Other Activity

August was a slower month in ‘new’ blogging terms mainly due to personal activities and the consequences of having a large internet footprint! Striking a balance is becoming more difficult.  I’m seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients (more on this later).  Also, I’ve been suffering with minor right hip pain but now seeing improvements working with a physiotherapist.  However, despite a low month for brand new blogs, I still managed to make the second highest monthly views ever……..Thank you all so much for the support.

Please join my 2017 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 I cannot accept telephone calls on a one to one basis.  However …..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.

By the time you read this update, the nominations and endorsements for the 2017 WEGO Health Awards will be closed.  If you remember last year, I made it to the final in two categories of Blog and Community, and then won the latter.  I should find out if I made the finals by the middle of September. Fingers crossed!  Many thanks to those who took the time and trouble to vote for me.

 

Awareness Activity in August 2017

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

  • Article features.  I was featured in a well shared and positive article entitled A revolution in the treatment of Neuroendocrine Tumors. A very positive look at the new treatments coming through. I didn’t agree with some of the content but ‘hey ho’ I cannot control what others write.  You can check out the article by clicking here.
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  In Aug, I tweeted 130 times on my personal account which lead to almost 90,000 views.  I was mentioned 94 times by other tweeters and gained 64 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. 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.  Currently 294 subscribers – up 10% on last month.  Will you be number 300?
  • 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.
  • Macmillan Cancer Support.  I’m proud to be a ‘Community Champion’ on the Macmillan Cancer Support Forum helping ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients.  I’ll be reporting more on this in the coming weeks.  This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation.  On August 30th, one of my blogs made their “top picks” generating some NET awareness – check out Living with Cancer – 6 tips for conquering fear
  • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read.  Cure Magazine has a readership of 1 million.  Click here to read more.

Speaking Engagements

  • On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance)  Things are starting to happen in this area and I already know Dr Mo Khan who is a NET specialist working hard on behalf of patients.  I’m really looking forward to visiting and talking to this group.

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently

Remember …….

Social Media and Stats

Blog Milestone.  In August, I tipped a 360,000 views! Thank you all so much Keep sharing! On track for 400000 by end of the October.

Facebook Milestone.  I would love to achieve 6000 followers by the end of 2017 but this will be a challenge.  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.

Also check out my sister Facebook sites here (click on ‘Like’).

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

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

Figures

  • Facebook 5143.  This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach).
  • Twitter4091 / 3160 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 360875
  • Blog with most views: 12568The Human Anatomy of Neuroendocrine Cancer 
  • Most blog views in one day:  2043 on 15 January 2017.  Why the spike? ….. The Human Anatomy of Neuroendocrine Cancer” 
  • Most blog views in one week: 7538 in July 2017.
  • Most blog views in one month: 24142 in July 2017.  Why the spike? … these blogs here:
Home page / Archives More stats 2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor More stats 1,253
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 985
I’m still here More stats 869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption More stats 846
Living with Neuroendocrine Cancer – Home Page More stats 824
Ignore this post about Neuroendocrine Cancer More stats 763
The Human Anatomy of Neuroendocrine Cancer More stats 759

WOW!  – that’s 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

Ronny

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

Disclaimer

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!

community_titled_transparent_2013-10-22

NETwork with Ronny © – Community Newsletter JULY 2017

 

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is July 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).  July 26th was the ‘Cancerversary‘ of my diagnosis – I’m still here after 7 years and I’m apparently a veritable newbie!  There’s some great comments on my ‘I’m Still Here’ post – check them out … ‘click here’

NET News

The following news items may be of interest:

  • Telotristat Ethyl (Xermelo) takes a step forward to being approved in Europe. Click here.
  • PRRT takes a step forward to being approved in USA.  Click here.
  • Ipsen launches the German version of ‘Living with NETs’ website.  Click here.

What’s happening on my Blog Site?  

As per above, a quiet month.  Due to the vagaries of Facebook inner workings, some of these may not have even shown on your timeline.  So, ICYMI …….here’s a summary with links, includes updated blogs.

There’s a lot of chatter about use of the word ‘fight’ in cancer parlance but most people are misrepresenting the word’s multiple meanings as per the most eminent English language dictionaries.  As for me, I’m ‘sticking to my guns’ on the subject.

I got some great comments on my monthly Lanreotide ‘butt dart’ post.  Feel free to add questions.  I may know some of the answers and cannot promise answers from Ipsen due to their regulatory arrangements but I will try!  Check out the discussion here …… ‘click here’

NET Cancer Blog Activity

July was a slower month in ‘new’ blogging terms mainly due to holiday.  I’m seeing a trend of low ‘new’ blog months, mainly due to external projects and a continuous stream of offline messages from patients.  Also, I’m still suffering with minor pain which has decided to move to my right hip (hopefully localising where the real problem is).  Physiotherapist appointment is next week.  However, despite a low month for brand new blogs, I managed to totally smash my monthly blog view record (after smashing it last month too!)  ……..Thank you all so much for the support.

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 I cannot accept telephone calls on a one to one basis.  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.

I’ve been nominated for the 2017 WEGO Health Awards in three categories so far, Blog, Patient Leader Hero and Lifetime Achievement.  If you remember last year, I made it to the final in two categories of Blog and Community and won the latter.  A vote for me is a vote for Neuroendocrine Cancer awareness. VOTE HERE PLEASE

Click on ‘Endorse Ronny Allan’.  It defaults to ‘Blog’ but the other two are there via the drop down menu.  Thanks, I cannot get to the finals without the votes.

Awareness Activity in July 2017

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

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving.  Currently 269 subscribers – up 12% on last month.
  • I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  Other irons are in the fire but unable to bring you firm news just yet.
  • I’m proud to be a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.  This is the biggest cancer support organisation in the UK.
  • I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read.  Click here to read more.

Speaking Engagements

  • On 12 July, I delivered a ‘patient view’ presentation to Ipsen (UK) which was well received.
  • On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance)  Things are starting to happen in this area and I already know Dr Mo Khan who is a NET specialist working hard on behalf of patients.  I’m really looking forward to visiting and talking to this group.
Me with some very nice Ipsen people! 12 July 2017 in London

Writing and other types of Engagement (external) – watch this space as I’m working on quite a few projects concurrently

Remember …….

Social Media and Stats

Blog Milestone.  In July, I tipped a THIRD OF A MILLION views! Thank you all so much Keep sharing! On track for 400000 by end of the year.

Facebook Milestone.  I met my target of 5000 followers a few months before my self inposed deadline date.  I’m very grateful!  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.

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

Medicine

Figures

  • Facebook 5007.  This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach). Please also join my 2017 awareness campaign event here (select ‘Going’)
  • Twitter4000 / 3095 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 337313
  • Blog with most views: 12323The Human Anatomy of Neuroendocrine Cancer 
  • Most blog views in one day:  2043 on 15 January 2017.  Why the spike? ….. The Human Anatomy of Neuroendocrine Cancer” 
  • Most blog views in one week: 7538 in July 2017.
  • Most blog views in one month: 20498 in July 2017.  Why the spike? … these blogs here:
Home page / Archives More stats 2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis More stats 1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had More stats 1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor More stats 1,253
Neuroendocrine Cancer – Incurable vs. Terminal More stats 1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) More stats 985
I’m still here More stats 869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption More stats 846
Living with Neuroendocrine Cancer – Home Page More stats 824
Ignore this post about Neuroendocrine Cancer More stats 763
The Human Anatomy of Neuroendocrine Cancer More stats 759

 

WOW!  – that’s 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 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

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

Disclaimer

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!

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NETwork with Ronny © – Community Newsletter JUNE 2017

 

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is June 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).

NET News

The following news items may be of interest:

  • NETs in the UK National News.  Great publicity.  Featuring NET Patient Foundation.  Click here.
  • Personalised PRRT is highlighted.  Click here.
  • Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here.
  • Videos from LACNETS.  I’ve not watched them all yet due to holiday but they are always great!  Click here.
  • PRRT.  News of a PRRT trial being set up for Inoperable Pheochromocytoma/ Paraganglioma. Not yet recruiting but read more here.
  • Immunotherapy.  Merkel Cell Carcinoma is already benefiting from an FDA approved drug with another pending.  Check out this link.
  • Awareness.  Giovanni from LACNETS generates awareness in her local area – I have no doubt that awareness saves lives.  Read here.
  • Lanreotide.  Ipsen announces approval in Japan for treating NETs.   Click here.

NET Cancer Blog Activity

June was a slower month in ‘new’ blogging terms mainly due to holiday but even during this holiday, I’m being invited to external projects and a continuing flow of private messages. I’m still suffering with back pain but patiently waiting to see a physiotherapist. However, despite a low month for brand new blogs, I still managed for the first time to break through the monthly blog view figure of 20000.  ……..Thank you all so much, a lot of this was down to your support for some scheduled posts whilst I was on holiday ♥

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 I cannot accept telephone calls on a one to one basis.  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.

I’ve been nominated for the 2017 WEGO Health Awards in three categories so far, Blog, Patient Leader Hero and Lifetime Achievement.  If you remember last year, I made it to the final in two categories of Blog and Community and won the latter.   The nominations period ends on 7th July and I’ll let you know how you can vote for me. A vote for me is a vote for Neuroendocrine Cancer awareness.

BREAKING NEWS (…ish).  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read.   You can see my profile here: http://www.curetoday.com/community/contributors

 

New (or significantly updated) Blogs Published

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

Awareness Activity in June 2017

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

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving.  Currently 239 subscribers – up 25% on last month.
  • I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  Other irons are in the fire but unable to bring you firm news just yet.
  • I’m proud to be a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.  This is the biggest cancer support organisation in the UK.
  • I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read.  Click here to read more.

Speaking Engagements

  • On 7 July, I’ve been invited to speak for 10 minutes at the PLANETS patient conference in Southampton.  This is special for me as it’s where my major treatments took place and some of my medical team will be there.
  • On 5th October, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting (moved from July due to forecast low attendance)  Things are starting to happen in this area and I already know Dr Mo Khan who is a NET specialist working hard on behalf of patients.  I’m really looking forward to visiting and talking to this group.

Writing and other types of Engagement (external)

On 12 July, I’ve been invited to speak to Ipsen (UK). Still setting up this short notice meeting, details to follow in a separate post.  Additionally, I was interviewed by a health reporter and separately by a health consultant. I’m not at liberty to provide details yet but if anything is published in the public domain, I will of course publish it on my social media channels.

Remember …….

Social Media and Stats

Blog Milestone.  In June, I tipped over 310000 views! Thank you all so much Keep sharing! On track for 400000 by end of the year.

Facebook Milestone.  I’m aiming for 5000 followers by year-end and this is on track. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

Figures

Where did June 2017 Blog views come from? – Top 10 countries:  Germany on the up (wunderbar). And thanks to USA!

 

For interest. the 10 Ten Facebook followers by Country – Germany still sneaking up (wunderbar wieder).  Interestingly Canada always reads more than Australia despite fewer followers.

 

WOW!  – that’s 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 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

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

Disclaimer

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!

community_titled_transparent_2013-10-22

NETwork with Ronny © – Community Newsletter MAY 2017

Hi NETworkers!

Welcome to my monthly ‘Community’ newsletter. This is April 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).

This year, it’s occurred to me that I’ve gone beyond just being known as a ‘blog’ and have transformed into something with a much wider focus within the NET Community and beyond. I’ve added a new section called NET News. This is a catch up of stuff I’ve accumulated over the past month but perhaps not yet posted or simply want to emphasise what I think is significant news about NETs or might impact or influence NETs  This section replaces ‘Highlights’ which will be renamed to ‘NET Cancer Blog Activity’ and cover my efforts to generate awareness and to help others.

NET News

The following news items may be of interest:

  • PRRT.  Advanced Accelerator Applications (AAA) the manufacturers of Lutathera for PRRT have announced they are on track for a mid year resubmission of the data (NDA) to the US FDA for their consideration and hopefully approval.  They also indicated that the EMA authorisation may happen in Q3 (period 1 July – 30 September) – this would be key for UK where the treatment was withdrawn from routine service in 2015.  Read more here.
  • New Trial.  Based on use of an immunotherapy drug ATEZOLIZUMAB (Tecentriq) combo’d with BEVACIZUMAB (more well known as Avastin) which is a type of biological therapy.  Click here.
  • Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here.

NET Cancer Blog Activity

Like April, May was a slower month in ‘new’ blogging terms due to a number of external projects and a continuing flow of private messages. I continue to suffer back pain but my GP is now sending me to a physiotherapist (I sometimes forget I’m a patient too!). However, despite a low month for brand new blogs, I still managed to accumulate the third biggest monthly blog views ever.  ……..Thank you all so much ♥

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.  The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow.

BREAKING NEWS:  I’ve been nominated for the 2017 WEGO Health Awards in two categories so far, Blog and Patient Leader Hero.  If you remember last year, I made it to the final in two categories of Blog and Community and won the latter.   I’ll bring you more details in due course.

Speaking Engagements

On 7 July, I’ve been invited to speak for 10 minutes at the PLANETS patient conference in Southampton.  This is special for me as it’s where my major treatments took place and some of my medical team will be there.

On 13 July, I’ve been invited to speak for around an hour at the Cardiff (South Wales) NET Patient meeting.  Things are starting to happen in this area and I already know Dr Mo Khan who is a NET specialist working hard on behalf of patients.  I’m really looking forward to visiting and talking to this group.

Writing and other Engagements (external)

I contributed to an article written by the CEO of WEGO Health about the spread of fake health news (miracle cures etc).  You can read the post here –On Facebook fake news can be life or death

I wrote an article for Macmillan Cancer Support which is due to be published on 5 Jun 2017 (will post next week).  This is part of Macmillan Volunteers week and I volunteered to write about my recent experience in becoming a Macmillan Community Champion.

I took part in a Macmillan poster campaign last year and finally got to stand next to a working poster in my home town of Dundee!  Here’s me here next to the poster:

There are one or two others but they are not firm yet – but you’ll be the first to know when I know!

New (or significantly updated) Blogs Published

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

Awareness Activity in May 2017

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

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving.  Currently 192 subscribers – up 20% on last month.
  • I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  Other irons are in the fire but unable to bring you firm news just yet.
  • I’m making new friends in the interventional radiologist community and am waiting on a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do! I’m also seeing an increase from the Pathology community.  The trailer for the documentary which will feature a NET Patient can be found by clicking here.  The actual documentary is now available on Vimeo and Amazon Prime.
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.

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

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

Social Media and Stats

Blog Milestone.  In May, I tipped over 290,000 views! Thank you all so much Keep sharing!

Facebook Milestone.  I’m aiming for 5000 followers by year-end and this is on track. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

Figures

  • Facebook 4689.  This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach). Please also join my 2017 awareness campaign event here (select ‘Going’)
  • Twitter3915 / 3017 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 292,626
  • Blog with most views: 9211The Anatomy of Neuroendocrine Cancer 
  • Most blog views in one day:  2043 on 15 Jan 2017.  Why the spike? ….. The Anatomy of Neuroendocrine Cancer” 
  • Most blog views in one month: 19,303 in Apr 2017.  Why the spike? …. too many to list – see above!

Where did May 2017 Blog views come from? – Top 10 countries:  India on the up.

 

For interest. the 10 Ten Facebook followers by Country – Germany sneaking up.  Interestingly Canada reads more than Australia despite fewer followers.  India reads a lot!

 

WOW!  – that’s 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 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

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

Disclaimer

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!

community_titled_transparent_2013-10-22

ASCO 2017 – Let’s talk about NETs #ASCO17

ASCO (American Society of Clinical Oncology) is one of the biggest cancer conferences in the world normally bringing together more than 30,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field.  As Neuroendorine Tumors is on a roll in terms of new treatments and continued research, we appear to be well represented with over 20 ‘extracts’ submitted for review and display.  This is fairly complex stuff but much of it will be familiar to many.  I’ve filtered and extracted all the Neuroendocrine stuff into one list providing you with an easy to peruse table of contents, complete with relevant linkages if you need to read more.  For many the extract title and conclusion will be sufficiently educational or at least prompt you to click the link to investigate further.  Remember, these are extracts so do not contain all the details of the research or study. However, some are linked to bigger trials and linkages are shown where relevant.  I’ve also linked to some of my blog posts to add context and detail.

I’m hoping to capture any presentations or other output from the meeting which appears to be relevant and this will follow after the meeting.  I will also be actively tweeting any output from the live event (for many cancers, not just NETs).

There’s something for everyone here – I hope it’s useful.

68Ga-DOTATATE PET/CT to predict response to peptide receptor radionuclide therapy (PRRT) in neuroendocrine tumours (NETs).  

Conclusions: Objective response to PRRT defines a subset of patients with markedly improved PFS. SUVave 21.6 defines a threshold below which patients have a poor response to PRRT. This threshold should be taken forward into prospective study.

Check out my recent blog discussing ‘Theranostic pairing” – click here

Rohini Sharma 4093
A multicohort phase II study of durvalumab plus tremelimumab for the treatment of patients (PTS) with advanced neuroendocrine neoplasms (NENs) of gastroenteropancreatic (GEP) or lung origin (the DUNE trial-GETNE1601-).

News of a trial – no conclusion included.  However, see trial data NCT03095274

Ignacio Matos Garcia TPS4146
Association between duration of somatostatin analogs (SSAs) use and quality of life in patients with carcinoid syndrome in the United States based on the FACT-G instrument.

Conclusions: The duration of SSA use was positively associated with QoL benefit among CS patients. This may be explained by long-term effectiveness of SSAs or selection bias favoring patients with more indolent disease. Future studies will be needed to distinguish between these possibilities.

Daniel M. Halperin e15693
Association of weight change with telotristat ethyl in the treatment of carcinoid syndrome.

Conclusions: The incidence of weight gain was dose-related on TE and was greater than that on pbo. It was possibly related to a reduction in diarrhea severity, and it may be a relevant aspect of TE efficacy among patients with functioning metastatic NETs. Clinical trial information: NCT01677910

See my blog post Telotristat Ethyl

Martin O Weickert e15692
Blood measurements of neuroendocrine tumor (NET) transcripts and gene cluster analysis to predict efficacy of peptide radioreceptor therapy.

Conclusions: A pre-PRRT analysis of circulating NET genes, the predictive quotient index comprising “omic” analysis and grading, is validated to predict the efficacy of PRRT therapy in GEP and lung NETs.

Lisa Bodei 4091
Capecitabine and temozolomide (CAPTEM) in neuroendocrine tumor of unknown primary.

Conclusions: CAPTEM shows activity in neuroendocrine tumor of unknown primary. Currently FDA approved treatment options for grade I and grade II GI NETs includes somatostatin analogs and everolimus. Both of which are cytostatic and of limited use in case of visceral crisis or bulky disease where disease shrinkage is required. CAPTEM should be considered for grade II NETS of unknown primary.

Aman Chauhan e15691
Clinical and epidemiological features in 495 gastroenteropancreatic neuroendocrine patients in Mexico.

Conclusions: This is the first multi-center study in Mexico. Which reflects the clinical characteristics of the NET_GET. The results differ in their epidemiology from that reported in other countries. However, the clinical and therapeutic results are very similar.

Rafael Medrano Guzman e15687
Effect of lanreotide depot (LAN) on 5-hydroxyindoleacetic acid (5HIAA) and chromogranin A (CgA) in gastroenteropancreatic neuroendocrine (GEP NET) tumors: Correlation with tumor response and progression-free survival (PFS) from the phase III CLARINET study.

Conclusions: These data suggest that serotonin is secreted by nonfunctioning tumors, but does not reach the threshold required for clinical carcinoid symptoms. Monitoring 5HIAA and CgA may be useful during LAN treatment of nonfunctional GEP NETs. Clinical trial information: NCT00353496

Alexandria T. Phan 4095
Final progression-free survival (PFS) analyses for lanreotide autogel/depot 120 mg in metastatic enteropancreatic neuroendocrine tumors (NETs): The CLARINET extension study.

Conclusions: CLARINET OLE suggests sustained antitumor effects with LAN 120 mg in enteropancreatic NETs irrespective of tumor origin, and suggests benefits with LAN as early treatment. Clinical trial information: NCT00842348

Edward M. Wolin 4089
Lanreotide depot (LAN) for symptomatic control of carcinoid syndrome (CS) in neuroendocrine tumor (NET) patients previously responsive to octreotide (OCT): Subanalysis of patient-reported symptoms from the phase III elect study.

Conclusions: Pts showed improvement in CS symptoms of flushing and diarrhea and reduction in 5HIAA levels with LAN treatment, indicating efficacy of LAN regardless of prior OCT use. Transition from OCT to LAN was well tolerated among prior OCT pts in ELECT. Clinical trial information: NCT00774930

Check out my blog post about Lanreotide and Lanreotide vs Octreotide

George A. Fisher 4088
Molecular classification of neuroendocrine tumors: Clinical experience with the 92-gene assay in >24,000 cases.

Conclusions: These findings highlight the utility of molecular classification to identify distinct NET tumor types/subtypes to improve diagnostic precision and treatment decision-making. In addition, significant differences in the distribution of molecular diagnoses of NET subtype by age and gender were identified.

Andrew Eugene Hendifar e15700
Multi-omic molecular profiling of pancreatic neuroendocrine tumors.

Conclusions: In PNETS, multi-omic profiling through the KYT program identified targetable alterations in several key pathways. Outcome data will be explored.

Rishi Patel e15685
Outcomes of peptide receptor radionuclide therapy (PRRT) in metastatic grade 3 neuroendocrine tumors (NETs).

Conclusions: In this poor prognosis G3 NET cohort of whom 77% had received prior chemotherapy, a median OS of 18 months from start of PRRT is encouraging and warrants further study. PRRT is a promising treatment option for patients with G3 NET with high somatostatin-receptor expression selected by SSRI.

Mei Sim Lung e15694
Periprocedural management of patients undergoing liver resection or liver-directed therapy for neuroendocrine tumor metastases.

Conclusions: Occurrence of documented carcinoid crisis was low in this high-risk population. However, a significant proportion of patients developed hemodynamic instability, suggesting that carcinoid crisis is a spectrum diagnosis and may be clinically under-recognized. Use of octreotide was not associated with risk of carcinoid crisis or hemodynamic instability; however, this analysis was limited by our modest sample size at a single institution. There remains a need to establish an objective definition of carcinoid crisis and to inform standardization of periprocedural use of octreotide for at-risk patients.

See my blog on “Carcinoid Crisis” 

Daniel Kwon e15689
Predictive factors of carcinoid syndrome among patients with gastrointestinal neuroendocrine tumors (GI NETs).

Conclusions: By assessing patients with GI NET from two independent US claim databases, this study suggested that patients diagnosed with CS were 2-3 times more likely to be diagnosed with liver disorder, enlargement of lymph nodes, or abdominal mass, than those without CS during the one year prior to CS diagnosis. Future studies using patient medical charts are warranted to validate and interpret the findings. These findings, when validated, may aid physicians to diagnose CS patients earlier.

Beilei Cai e15690
Predictors of outcome in patients treated with peptide radio-labelled receptor target therapy (PRRT).

Conclusions: Radiological progression within 12 months of completion of PRRT is associated with a worse outcome in terms of OS. Patients with greater liver involvement and highest CgA levels are more likely to progress within 12 months of treatment completion. Earlier treatment with PRRT in patients with radiological progression not meeting RECIST criteria may need to be considered. There may be a greater survival benefit if PRRT is given prior to the development of large volume disease.

Dalvinder Mandair 4090
Pre-existing symptoms, resource utilization, and healthcare costs prior to diagnosis of neuroendocrine tumors: A SEER-Medicare database study.

Conclusions: To the best of our knowledge, this is the first population-based study to examine potentially relevant pre-existing symptoms, resource utilization and healthcare costs before NET diagnosis. NET patients were more likely to have certain conditions and incurred higher resource utilizations and costs in the year preceding diagnosis of NET.

Chan Shen 4092
Prevalence of co-morbidities in elderly patients with distant stage neuroendocrine tumors.

Conclusions: This population-based study showed that elderly NET pts have significantly different prevalence of co-morbidities compared to non-cancer controls. The impact of these conditions on survival and therapeutic decisions is being evaluated.

A. Dasari e15699
Prognostic factors influencing survival in small bowel neuroendocrine tumors with liver metastasis.

Conclusions: In patients with SBNET with liver metastasis, higher tumor grade and post-operative chemotherapy increased risk of death. However, resection of the primary tumor along with liver metastasis improves the 5-year OS with complete cytoreduction providing the most benefit.

Nicholas Manguso e15688
Role of 92 gene cancer classifier assay in neuroendocrine tumor of unknown primary.

Role of 92 gene cancer classifier assay in neuroendocrine tumor of unknown primary. | 2017 ASCO Annual Meeting Abstracts

Conclusions: Tissue type ID was able to identify a primary site in NETs of unknown primary in majority (94.7%) of cases. The result had direct implication in management of patients with regards to FDA approved treatment options in 13/38 patients (pNETs, merkel cell and pheochromocytoma).

Aman Chauhan e15696
Surgery in combination with peptide receptor radionuclide therapy is effective in metastatic neuroendocrine tumors and is definable by blood gene transcript analysis.

Conclusions: Radical loco-regional surgery for primary tumours combined with PRRT provides a novel, highly efficacious approach in metastasised NET. The NETest accurately measures the effectiveness of treatment.

Andreja Frilling e15697
The impact of pathologic differentiation (well/ poorly) and the degree of Ki-67 index in patients with metastatic WHO grade 3 GEP-NECs.

Conclusions: Grade 3 GEP-NECs could be morphologically classified into well and poorly differentiated NETs. Additionally, among grade 3 GEP-NECs, there was a significant difference in ranges of Ki67 index between well and poorly differentiated NECs. Higher levels ( > 60%) of Ki67 index might be a predictive marker for efficacy of EP as a standard regimen in grade 3 GEP-NECs.

Check out my blog post on Grading which has incorporated latest thinking in revised grade 3 classification

Seung Tae Kim e15686
Theranostic trial of well differentiated neuroendocrine tumors (NETs) with somatostatin antagonists 68Ga-OPS202 and 177Lu-OPS201.

Conclusions: In this trial of heavily treated NETs, preliminary data are promising for the use of 68Ga-OPS202/177Lu-OPS201 as a theranostic combination for imaging and therapy. Additional studies are planned to determine an optimal therapeutic dose and schedule. Clinical trial information: NCT02609737

Diane Lauren Reidy 4094
Use of antiresorptive therapy (ART) and skeletal-related events (SREs) in patients with bone metastases of neuroendocrine neoplasms (NEN).

Conclusions: SREs in NEN patients with BM were not uncommon, especially in patients with grade 3 NEN and osteolytic metastases. Application of ART did not significantly alter median OS or TTSRE, no subgroup with a benefit of ART could be identified. The use of ART in NEN should be questioned and evaluated prospectively.

Leonidas Apostolidis 4096
Targeted radiopeptide therapy Re188-P2045 to treat neuroendocrine lung cancer

Conclusions: Rhenium Re 188 P2045, a radiolabeled somatostatin analog, may be used to both identify and treat lung cancer tumors. The ability to image and dose patients with the same targeted molecule enables a personalized medicine approach and this highly targeted patient therapy may significantly improve treatment of tumors that over express somatostatin receptor.

Christopher Peter Adams, Wasif M. Saif e20016

Thanks for reading

Ronny
Hey, I’m also active on Facebook.  Like my page for even more news.
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NETwork with Ronny © – Newsletter April 2017

Hi NETworkers!

Welcome to my sixth ‘Community’ newsletter. This is April 2017’s monthly summary of Ronny Allan’s Community news, views and ICYMI (in case you missed it!).

Highlights

There are two main highlights for April which stood out for me:

  1. The publication of my WEGO Health Award PODCAST.  This was a radio interview prior to the announcement that I had won the WEGO ‘Best in Show Community’ award.  It was designed around a red carpet scenario where the nominees are entering the award ceremony (everything in the virtual world of course).  If you missed it, you can listen to it by clicking here.
  2. The announcement of new USA database figures for incidence and prevalence of NETs. This confirms it is now mathematically impossible for NETs not to be a rare disease in 2017.  I’m not in any way surprised by the authoritative data provided and I’ve been forecasting this for 2 years.  You can read all about the conversion of NETs from rare to less common by clicking here. I truly believe a new and more compelling awareness paradigm must now be adopted by the community.

April was a slower month in ‘new’ blogging terms due to a number of external projects and a continuing flow of private messages. Not forgetting two weeks of lower back pain (don’t forget, I’m a patient too!).

I don’t have an issue with private contact but please note my disclaimer. However, despite a low number of brand new blogs, I still managed to accumulate the biggest monthly blog views ever.  ……..Thank you all so much 

New (or significantly updated) Blogs Published

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

Other News in Apr 2017

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

  • I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness). There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving.  Currently 192 subscribers – up 20% on last month.
  • I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  Other irons are in the fire but unable to bring you firm news just yet.
  • I’m making new friends in the interventional radiologist community and am waiting on a video featuring a NET Patient (will bring you details in due course) and I’m learning more about these technologies from reading their tweets – I had no idea how many different jobs these guys do! I’m also seeing an increase from the Pathology community.  The trailer for the documentary which will feature a NET Patient can be found by clicking here.
  • I’m proud to have been asked to become a ‘Community Champion’ on the Macmillan Cancer Support Forum helping outliers from the NET community there. I’ll be reporting more on this in the coming weeks.

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

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

Social Media and Stats

Blog Milestone.  In Apr, I tipped over 275,000 views! Thank you all so much Keep sharing!

Facebook Milestone.  I’m aiming for 5000 by year-end and this is on track. The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Instagram

I’m expanding into Instagram to see how that goes. I’ve amassed over 200 followers to date. Initially, I’ll just be posting pictures of things that inspire me, mostly scenic photos of places I’ve been or want to go!  You can follow me here:  Click here to go to my Instagram page

Figures

  • Facebook 4522.  This is a key outlet for my blog – please encourage others to like my page (if you’d like to know how to use your Facebook to invite others to my page – let me know, I can provide you with a step by step approach). Please also join my 2017 awareness campaign event here (select ‘Going’)
  • Twitter3836 / 2955 Follow me here @RonnyAllan1 / @NETCancerBlog
  • Total Blog Views: 275,904
  • Blog with most views: 8261 – The Anatomy of Neuroendocrine Cancer 
  • Most blog views in one day:  2043 on 15 Jan 2017.  Why the spike? ….. The Anatomy of Neuroendocrine Cancer” 
  • Most blog views in one month: 19,303 in Apr 2017.  Why the spike? …. too many to list – see above!

Where did Apr 2017 Blog views come from? – Top 11 countries:  Large increase from Germany.

For interest. the 10 Ten Facebook followers by Country – Germany now appears!

WOW!  – that’s 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 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

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

Disclaimer

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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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Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don't believe the hype - 10 myths

 

OPINION.

There’s a lot of inaccurate and out of date information out there.  Some is just a lack of understanding, often with a combination of patient forum myth spreading. Some can only be described as propaganda.

Myth 1:  All Neuroendocrine Tumours are benign

Not trueBy any scientific definition, the word ‘tumour’ means ‘an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)’.  Sure, some NETs will be benign.  However, The World Health Organisation (WHO) 2010 classification for digestive system is based on the concept that all NETs have malignant potential, and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential.  This has been reinforced in the 2017 update to include clarification for other endocrine organ types of NET including Pheochromocytoma. Read more here.  The word ‘Carcinoid’ is inextricably linked with this issue – read here why we need to stop using the term to help fight the benign myth.

Kunz His belief these tumors did not metastisize

Myth 2:  Neuroendocrine Tumours is a terminal condition

Not true.  By any definition of the word terminal in a medical diagnostic context, most NET patients have a good prognostic outlook, even those with metastatic and incurable variants of the disease. Read more here.

being_there_front
Graphic courtesy of Ellie McDowell

Myth 3: Carcinoid is another word for Neuroendocrine Tumours 

Not true.  Carcinoid is a very old term and was phased out years ago.  Carcinoid is not mentioned in the latest WHO Classification schemes for Neuroendocrine Neoplasms (a term covering Neuroendocrine Tumours and Neuroendocrine Carcinoma). Unfortunately, the problem is exacerbated by organisations and individuals who still use the word.  Also, those who use the following terms:

  • “Carcinoid Neuroendocrine”,
  • “Neuroendocrine Carcinoid”,
  • “Carcinoid and Neuroendocrine”,
  • “Neuroendocrine and Carcinoid”,
  • “Carcinoid NETs” or “CNET”

These are all contextually incorrect and misleading terms (not to mention the bad grammar). ENETS, NANETS and NCCN publications are gradually phasing the word out except in relation to Carcinoid Syndrome (and even then there could be easy solutions for this). Read more here and here.

carcinoid vs neuroendocrine

Myth 4:  All NET patients get ‘carcinoid syndrome’

Not true.  Firstly, many NET cancers are non-functional; and secondly, carcinoid syndrome is only one of a number of “NET Syndromes” associated with the various types of NET. However, the issue is further confused by those who use the word ‘Carcinoid‘ to incorrectly refer to all NETs and use Carcinoid Syndrome to refer to all NET Syndromes.  Read more here.

Early signs of a late diagnosis (2)

Myth 5:  Neuroendocrine Neolasms are rare

Not true.  As a collective grouping of cancers, this is no longer accurate. Read more here.  Also check out my post about the “Invisible NET Patient Population“.

Yao not rare

Myth 6:  Steve Jobs had Pancreatic Cancer

Not true.  Steve Jobs had a Neuroendocrine Tumour of the Pancreas.  Ditto for a few other famous names. Read more here.

steve jobs 2010
The last few years have reminded me that life is fragile

Myth 7:  I’m not getting chemotherapy, I must be doing OK?

Not true.  For some cancers or some sub-types of cancers, although it remains an option, chemotherapy is not particularly effective, e.g. some types of Neuroendocrine Cancer (NETs). In general, well differentiated NETs do not normally show a high degree of sensitivity to chemotherapy, although some primary locations fare better than others. However, many of the treatments for NET Cancer are somewhat harsh, have long-term consequences, and have no visible effects. NET patients are often said to “look well” but that doesn’t mean they are not struggling behind the scenes or under the surface.  Read more here.  P.S. Afinitor (Everolimus), Sutent (Sunitinib) are not chemo – Read more here.

chemotherapy-hand-and-arm

Myth 8:  All diarrhea is caused by carcinoid syndrome

Not true.  It could be one of the other syndromes or tumor types or a side effect of your treatment.  Check out this post.

NETCancer Diarrhea Jigsaw

Myth 9:  Neuroendocrine Tumours is a ‘good cancer’

Not true.  Simply, no cancer is good.  Some are statistically worse than others in prognostic terms, that’s true…… but living with NETs is very often not a walk in the park. However, no one cancer is better to get than any other – they’re all bad.  Read more here.

Good-Bad

Myth 10:  Every NET Patient was misdiagnosed for years

Not true.  Many NET Patients are correctly diagnosed early on in their investigation and in a reasonable time.  This myth is perpetuated because of two things: firstly, on forums, the ratio of long-term misdiagnosis is high creating a false perception; and secondly, the method of capturing patient surveys is not extensive enough – again creating a false perception.  In fact, the latest and largest database analysis from US indicates earlier diagnosis is improving, with more and more NETs being picked up at an early stage. Read more here.

if your doctors dont suspect something

Myth 11:  Somatostatin Analogues are a type of Chemotherapy

Not true.  Somatostatin Analogues (e.g. Octreotide and Lanreotide) are not chemotherapy, they are hormone inhibiting drugs.  They are more biotherapy. As the drugs latch onto somatostatin receptors, they are more targeted than systemic. For the record, Everolimus (Afinitor) and Sunitinib (Sutent) are not chemotherapy either. Read more here.

chemo-or-not-chemo

Myth 12:  Stuart Scott (ESPN) and Audrey Hepburn had Neuroendocrine Cancer. 

Not true. This is a common misunderstanding within the community.  They both had Pseudomyxoma Peritonei (PMP).  Read more about PMP here.

 

 

 

Myth 13:  I’ve been diagnosed with Neuroendocrine Tumours – my life is over

Not true.  Many patients live a very long time and lead fairly normal lives with the right treatment and support. It’s difficult but I try not to use ‘I can’t’ too much. Read more here.

I CAN

Myth 14:  There are only a handful of Neuroendocrine specialists in the world

Not true.  There are many specialists in many countries. Get links to specialists by clicking here

find net specilaist and 10 qeusitons

 

Myth 15:  The Ga68 PET scan is replacing the CT and MRI scan in routine surveillance for all NET Patients

Not true.  It is actually replacing the Octreotide Scan for particular purposes,  or will eventually.  Read more by clicking here.

PET-CT-Scanner

Myth 16:  All NET Patients are Zebras

Not true.  They are in fact human beings and we should treat them as such. Please don’t call me a zebra, I and many others don’t appreciate it. Please don’t use the term on my social media sites, the comment or post will be removed.  Sorry but I refuse to perpetuate this outdated dogma. Read why here:

hoofbeats

Myth 17: Multiple Endocrine Neoplasia (MEN) is a type of Neuroendocrine Tumour

Not true. Multiple Endocrine Neoplasia are syndromes and inherited disorders not tumours.  You can actually have MEN and not have any tumours.  However, these disorders can put people at more risk of developing Neuroendocrine or Endocrine Tumours. Read more here

genetics

Myth 18: Palliative Care means end of life or hospice care  

Not true. Palliative care is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness. A multidisciplinary care team aims to improve quality of life for people who have serious or life-threatening illnesses, no matter the diagnosis or stage of disease. Read more here

The P word

Myth 19: Serotonin is found in foods

Not true. Serotonin is manufactured in the body. Read more here

brain-neurotransmitter-serotonin

Myth 20: NETs cannot be cured

Not true. If caught early enough, some NETs can be treated with curative intent (totally resected with margins) with little or no further follow up.  It says this in ENETS and NANETS publications which are authored by our top specialists. If we can’t believe them, who can we believe? Read more here.

cure quote

Myth 21: Pancreatic Enzyme Replacement Therapy (Creon etc) is only for pancreatic patients

Not true. It’s for any patient who is exhibiting exocrine pancreatic insufficiency. Read more here.

PERT

 

Myth 22: High Grade NETs are Carcinomas

Not entirely true.  Grade 3 (high grade) comprises well differentiated tumours and poorly differentiated tumours.  Only poorly differentiated tumour are carcinomas. Read more here.

High Grade

More to follow no doubt

For general cancer myths and the dangers of fake health news, please see my ARTICLE HERE

Thanks for reading

Ronny

Hey Guys, 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

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!

patients included

wego blog 2018 winner

Lanreotide vs Octreotide

new lanreotide
New delivery system for Lanreotide – solution remains the same

Somatostatin Analogues are the ‘workhorse’ treatments for those living with NETs, particularly where certain syndromes are involved.  So not just for classic NETs with Carcinoid Syndrome but also for treating insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors.  They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size – but there are always outliers where such effects are displayed.

Somatostatin is actually a naturally occurring hormone produced by the hypothalamus and some other tissues such as the pancreas and the gastrointestinal tract. However, it can only handle the normal release of hormones.  When NET syndromes occur, the naturally occurring somatostatin is unable to cope. The word ‘analogue’ in the simplest of terms, means ‘manufactured’ and a somatostatin analogue is made to be able to cope with the excess secretion (in most cases).

Although there is hidden complexity, the concept of the drug is fairly simple.  It can inhibit insulin, glucagon, serotonin, VIP, it can slow down bowel motility and increase absorption of fluid from the gut. It also has an inhibitory effect on growth hormone release from the pituitary gland (thus why it’s also used to treat a condition called Acromegaly). You can see why it’s a good treatment for those with NET syndromes, i.e. who suffer from the excess secretions of hormones from their NETs.  Clearly there can be side effects as it also inhibits digestive enzymes which can contribute to, or exacerbate, gastro-intestinal malabsorption.

Please note somatostatin analogues are not chemo.  There are two major types in use:

  • Octreotide – or its brand name Sandostatin.  It is suffixed by LAR for the ‘long acting release’ version.
  • Lanreotide – brand name Somatuline (suffixed by ‘Depot’ in North America, ‘Autogel’ elsewhere)

So what’s the difference between the two?

A frequently asked question. Here’s a quick summary:

  • They are made by two different companies.  Novartis manufactures Octreotide and Ipsen manufactures Lanreotide.  Octreotide has been around for much longer.
  • The long-acting versions are made and absorbed very differently.  Octreotide has a complex polymer and must be injected in the muscle to absorb properly.  Lanreotide instead uses has a novel nanotube structure and is water based (click here to see a video of how this works). It is injected deep-subcutaneously and is therefore easier to absorb and is not greatly impacted if accidentally injected into muscle.
  • Their delivery systems are mainly via injections but are fundamentally different as you can see from the blog graphic which shows the differences between the long acting release versions.  Octreotide long acting requires a pre-mix, whilst Lanreotide comes pre-filled.
  • The long-acting versions are 60, 90 and 120 mg for Lanreotide and 10, 20 and 30 mg for Octreotide.
  • Octreotide also has a daily version which is administered subcutaneously.
  • Octreotide has something called a ‘rescue shot’ which is essentially a top up to tackle breakthrough symptoms.  It is a subcutaneous injection.
  • You can also ‘pump’ Octreotide using a switched on/off continuous infusion subcutaneously.
  • Other than for lab/trial use, to the best of my knowledge, there is no daily injection, rescue shot or ‘pump’ for Lanreotide that is indicated for patient use.
  • Whilst both have anti-tumour effects, there are differences in US FDA approval: Octreotide (Sandostatin) is approved for symptom control (not anti-tumor) whereas Lanreotide (Somatuline) is approved for tumour control. However, the US FDA recently added a supplemental approval for syndrome control on the basis that it is proven to reduce the need for short acting somatostatin analogues use – read more here.  This supplementary approval followed the ELECT trial – results here.

Injection Administration

Always refer to the patient information leaflet as it is not safe to assume that all healthcare professionals are familiar with the administration.  Common issues include (but are not limited to): drug temperature requirements, injection site, pinching vs stretching skin, speed of injection.

Please note a new syringe for Lanreotide will be available in June 2019. Further information will be communicated to healthcare professionals in advance of this, to enable them to inform their patients, whom have been prescribed Lanreotide. In addition, the patient information leaflet included in the packet will have clear instructions for use. There will be a prominent yellow box located on the outer carton of the medicine, alerting healthcare professionals and patients that a new syringe is contained inside. Please note that the medicine is still the same and the formulation and storage conditions have not changed.

Here are some interesting videos showing and explaining their administration:

Administering a Somatuline Depot (Lanreotide) injection:

Administering a Sandostatin LAR (Octreotide) injection:

This link also provides guidance on the “new formulation” Octreotide.  Click here.

My own experience only includes daily injections of Octreotide (Sep-Nov 2010) and Lanreotide (Dec 2010 onwards).  I’ve also had continuous infusion of Octreotide in preparation for surgical or invasive procedures over the period 2010-2012 (i.e. crisis prevention).  You can read about my Lanreotide experience by clicking here.  If you are interested in what might be coming downstream, please see my blog entitled Somatostatin Analogues and Delivery Systems in the Pipeline’.

Injection site granulomas (lumps)

The issue of ‘granulomas‘ or ‘injection site granulomas’ seems to figure in both drugs. Gluteal injection site granulomas are a very common finding on CT and plain radiographs. They occur as a result of subcutaneous (i.e. intra-lipomatous) rather than intramuscular injection of drugs, which cause localised fat necrosis, scar formation and dystrophic calcification. But no-one seems to know why they occur with somatostatin analogues.

Personally, I find that they are more conspicuous if the injection is done slightly too high which was my initial experience and they took months to fade.  I opted to stand up for the first two injections and I attribute this decision for a slightly too high injection site.  I now lie down which is actually recommended for the smaller and thinner patient. Although the lumps have reduced in size, I have not seen a new lump for some time indicating location might have been the cause. They sometimes show up on scans.  This is not a new problem and has been highlighted for the last 10 years in academic papers.  This particular paper is useful and the conclusion confirms this is not something that should worry patients too much. Read more here

Somatostatin Analogues and raised blood sugar levels

It is well documented that both Octreotide and Lanreotide can elevate blood glucose (sugar) levels.  Read more in my article Diabetes – the NET Effect.

Somatostatin Analogues and thyroid levels

It is well documented that both Octreotide and Lanreotide can mess with thyroid hormone levels. Read more in my article on Don’t be underactive with your Thyroid surveillance.

At Home Services

Many areas have ‘at home’ services, read here to see if you qualify.

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!

patients included

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Neuroendocrine Neoplasms (NEN) – benign vs malignant

Kunz His belief these tumors did not metastisize

OPINION:

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

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

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

Definitions

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

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

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

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

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

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

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

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

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

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

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

Neuroendocrine Tumours – Benign or Malignant?

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

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

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

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

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

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

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

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

Kunz His belief these tumors did not metastisize

How are NENs Classified?

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

Can some NETs be Benign?

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

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

don't worry it's benign widescreen

Can Tumours be Malignant or become Malignant?

Using the definition above, if a tumour invades and destroy nearby tissue and spread to other parts of the body, then it’s malignant (i.e  Cancer). However, there’s a reason why the WHO declared in 2010 that all NETs have malignant potential (as amplified in WHO 2017). It may not happen or it may happen slowly over time but as Dr Richard Warner says, “they don’t all fulfill their malignant potential, but they all have that possible outcome”.  Thus why ongoing surveillance is important after any diagnosis of Neuroendocrine Tumour of any grade or at any stage.  Dr Lowell Anthony, a NET Sp