Neuroendocrine Cancer: a needle in a haystack

It’s no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the SEER database report issued in 2017), there is still a lot of ground to cover. It’s also no secret that certain cancers are difficult to diagnose (NETs is one) and there are a number of reasons why this happens, including but not limited to: – they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood.

I wanted to cover two different aspects of the problem of finding NETs. Firstly, in finding the primary tumour so that the type of NET can be properly established – this drives the best treatment regime. Secondly in finding all the tumours, as this establishes the correct and most detailed staging declaration – this drives treatment plans and surveillance regimes that need to be put into place.

Hunting Tumours – Primary vs Secondary

It’s really important to determine which tumours are primary and which are secondary (metastasis). There’s a number of ways to help work this out and knowledge of NETs epidemiology studies can help.

Specialist Knowledge – certain things are known about the behaviour of NETs

Specialists and in particular NET specialists will be aware of the vagaries of NETs in terms of what tumours are normally a primary and which are normally secondary and many of the pitfalls involved in working that out. Many NETs will have metastasized to the liver at diagnosis, so whilst it is not impossible to have a primary liver NET, the vast majority of liver tumours found will be secondary (metastases). NET Specialists are more likely to have the experience than generalists. They know that the varying metastatic potential depending on the primary site clearly indicates differing biology and genetics across sites and they know that NETs are indeed a heterogeneous group of tumours. The differences cannot be explained by whether the NET is situated in the foregut, midgut, or hindgut. For example, Appendiceal NET is known to be less prone to metastasis. This may be due to the high rate of incidental ﬁndings during appendectomies, or because the appendix is an immunological organ where malignant cells can therefore be expected to be frequently recognized by the immune system.

The majority of the digestive tract is drained by the portal venous system, explaining the dominance of liver metastases in this group of tumours. This also explains our ﬁnding that many nervous system and bone metastases originate from NETs in the lungs. Disseminated tumour cells may directly reach the systemic circulation from the lungs, whereas if originating from the midgut region, they need to ﬁrst pass both the liver and the lungs.

As an example of this heuristic knowledge, one Swedish study indicated that two-thirds of peritoneal metastases will be attributed to Small Intestine NETs (SI NETs). SI NETs and Pancreatic NETs (pNETs) are the most likely to metastasize. The least likely sites to metastasize are the Appendix and Rectum. The same study indicated that in addition to the common metastatic locations of lymph nodes and liver, Lung NETs are more likely to metastasize to the brain and bone than other types. I believe the findings from this study more or less correlates to other information I’ve had access to and also confirms the technical behaviour paragraph above.

Multiple Primary Tumours

With NETs there are two scenarios:

1. Multiple primaries in same organ/location (multicentric). This is fairly common in small intestine (SI NETs), stomach/gastric NETs (gNETs), and also found in Lung and pNETs too. NET experts will be aware of the issue and know to look for the possibility. This is an important point with SI NETs as it’s quite long although held together by the mesentery, so a ‘Mark 1 eyeball’ can be more efficient in finding NETs in this organ than scans. There is a very well known surgical technique called “running the bowel” where they check the small intestine for signs of other primary tumours – they can do the same with the large intestine. Additional surgeries due to this lack of knowledge could come with significant morbidity. Multiple ‘nodes’ and ‘lesions’ are common in the thyroid.

2. Multiple primaries in different locations. This is common with Multiple Endocrine Neoplasia (MEN) syndromes (the name gives it away) and these may be metasynchronous. MEN1 for example can have tumours in what is called the ‘3 P’ locations, pituitary, pancreas and parathyroid. Of course MEN guys may also have multiple primaries in the same organ (multicentric). Read more about MEN by clicking here.

There’s probably a third scenario (for all cancers) and that is multiple primaries with different cancers (i.e a second, third and fourth cancer etc). Synchronous would be really unlucky but metasynchonous is more likely and there are many NET patients with a second cancer.

What else helps find a NET?

There are many other clues open to those involved in diagnosing a NET:

Patient. Very often the patient plays a big part of determining where the primary and other tumours might be by carefully describing symptoms.

Incidental Finds. NETs are very often found incidentally during trips to the ER/A&E and also during tests for something else. This is particularly the case with Appendiceal NETs and might explain why the average age of a patient is significantly lower in this type of NET.

Blood tests and Hormone Markers. We are not yet in a position where these types of tests can diagnose (but we are moving in that direction). In the case of unknown primaries (CUP), sometimes test results can help to find where some of these cancers started. With NETs, symptomatic patients can often test to confirm an elevated hormone marker which may narrow it down to a specific organ or gland. Read more here.

Scans and Endoscopies. Most cancers of a certain size may show up on conventional scanning such as CT, MRI and Ultrasound. Nuclear scans are now playing a bigger part in finding tumours which betray their location through functional behaviour by lighting up or glowing on these imaging devices. Endoscopies (e.g. gastroscopies, colonoscopies, even gastro intestinal pill cameras can be used) can help but like scans are not foolproof). Generally with NETs, if you can see it, you can detect it. Read more here.

Hereditary Conditions. Around 5-10% of NETs are hereditary in nature, mostly involving the MEN group of syndromes. Many of those people will know they are at risk of developing NETs and their doctors should know the most common locations for primary tumours associated with each gene. So a declared or suspected hereditary syndrome is useful in finding primary tumours if they exist and are proving difficult to find.

Biopsies. “Tissue is the issue”. Pathology can very often give really strong clues as to the type of NET and therefore the likely location of a primary tumour, for example additional tests such as immunostains. Many biopsies will come from secondary cancer (metastases), mostly the liver. Despite all the potential diagnostic routes above, the place the cancer started is sometimes still not found and this may lead to atypical diagnostic/treatment plans and in certain cases this might even include exploratory biopsies via surgery (invasive/minimally invasive), perhaps combined with opportunistic tumour removal if found during the procedure.

Staging. Simple staging can be given if locations of metastases are known. For example in the case of Liver metastases, the stage is automatically Stage 4. However, the full staging definition relies on knowing distant metastases, loco-regional metastases and the full Tumour/Node/Metastases (TNM) definition (size, spread, etc) cannot be fully complete without a primary. Read more here.

Cancers of Unknown Primary

Cancer is always named for the place where it started, called the primary site. Sometimes doctors can’t tell where a cancer may have started. When cancer is found in one or more places where it seems to have spread, but the site where it started is not known, it is called a cancer of unknown primary (CUP) or an occult primary cancer.

When you look at the ratio of all cancers, the figure for cancers of unknown primary (CUP) is quite startling. Depending on where you look the figure is around 2-10%. That doesn’t seem a lot but when you consider the amount of people diagnosed with cancer, the total figure must be staggering. Interestingly, Cancer Research UK say that 60% of CUP cases are in the over 75s. In another interesting Swedish study, doctors claimed that the rates of metastatic cases were higher with certain NETs than they were in their anatomical counterparts, reinforcing the dangerous and sneaky nature of NETs.

Despite quite advanced scanning and diagnostic testing currently in place, and the extensive knowledge of NET specialists, there can still be reasons for not being able to find the primary tumour:

The primary is just too small to be seen and is growing quite slow. Very small cancers might not cause symptoms or be seen on scans. This is a particularly relevant point with NETs.
The primary could be hidden in tissue in between different organs causing confusion about the actual primary location.
The body’s immune system killed the primary cancer. It’s also possible (but not common) that any secondary cancer (i.e. metastases) is still growing.
The tumour has become loose from its primary location and exited the body, e.g. from a wall of the bowel and excreted out in the stool.
The primary cancer was removed during surgery for another condition and doctors didn’t know cancer had formed. For example, a uterus with cancer may be removed during a hysterectomy to treat a serious infection.

Summary

I hope this is useful for many NET patients, particularly those who are looking for a diagnosis or looking for a primary tumour.

Neuroendocrine Cancer – at times, it can really be like looking for a needle in a haystack.

Thanks for reading

Ronny

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Neuroendocrine Cancer – is normally slow growing BUT …..

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

BUT

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

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

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

No thanks for making a right mess inside my body!

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

No thanks for generating fibrosis throughout my mesentery and retroperitoneum!

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

No thanks for screwing up some of my hormones

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

No thanks for the ongoing symptoms and side effects

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

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

Surveillance and treatment for life SUCKS!

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

No thanks for the weight loss

As if I needed it

No thanks for the hypothyroidism

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

No thanks for increasing my diabetes risk

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

No thanks for making me retire early

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

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

Neuroendocrine Cancer is a very expensive disease to treat.

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

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

Thanks for reading

Ronny

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Neuroendocrine Cancer Clinical Trial: Advanced Oncology Formula enterade®

Diarrhea is a huge subject for NET patients, whether it’s caused by the tumor itself (i.e. a syndrome), due to treatment, knock on effects of treatment, or some other reason, it can dramatically limit qualify of life. Working out the root cause can be problematic even for medical teams. I wrote about these issues before in my article Neuroendocrine Cancer – the diarrhea jigsaw. So when I saw the data from a trial of something called enterade®, I was immediately drawn to investigate. I don’t normally write articles on over the counter commercial products but this one is an exception given that it has been classed as a medical food since 2012 and is also used to rehydrate patients undergoing radiotherapy and chemotherapy for cancer (so not just for NETs).

What is enterade® ?

It’s a drink currently produced in 8oz bottles. It’s a first-in-class, glucose-free medical food i.e. it is intended to be used under the supervision of a healthcare provider. The solution comprises five critical amino acids – Valine, Aspartic Acid, Serine, Threonine, Tyrosine and electrolytes – potassium and sodium.

What does it do?

It’s designed to help manage debilitating gastrointestinal (GI) side effects. With no sugar to exacerbate the GI tract, enterade® supports the small bowel’s ability to absorb fluids, nutrients, and electrolytes and leads to improved digestive function. By helping to restore normal GI function, enterade® reduces diarrhea and dehydration, leading to a significant improvement in the patient’s overall quality of life and a healthier GI tract.

Is there evidence that it works?

Since May 2017, it’s been trialled by University of Kentucky Markey Cancer Center (MCC) for potential use by NET patients – trial coordinators include the well-known NET specialist Dr Lowell Anthony. The results so far are very interesting. The recent conference reported revised data as follows:

33 of 41 patients (80%) reported subjective improvement in diarrheal symptoms.

51% (21/41) reported more than 50% reduction in diarrhea frequency.

click here or on the poster below to see the trial poster data output.

asco poster enterade as a graphic — click to read full screen

As you will see from the poster, there were a wide range of patient types including (but not limited to) small intestinal NETs, bronchial NETs, NETs of unknown primary, gastric NETS, pancreatic NETs and one high grade neuroendocrine carcinoma of the prostate.

A follow on Phase 2 trial is now recruiting with the following detail available:

1. Up to 30 patients will be recruited.

2. The trial is coordinated by Markey Cancer Centre, Kentucky.

3. There will be two cohorts, those with carcinoid syndrome and those without.

4. The trial will run from December 2018 to August 2020.

Click here to see the trial information – important to note the inclusion and exclusion criteria.
Read the trial start announcement by clicking here.
Please also note there’s a plan for a follow on trial covering more locations. I will update further when known.

Can I buy Enterade now?

The product is available in North America on Amazon.com, www.enterade.com and 1-855-enterade. However, the parent company (Entrinsic Health) recently announced a partnership with global company Nestlé Health Science to provides worldwide commercial license and supply agreement for enterade®. The announcement is linked here:

NORWOOD, Mass., November 15, 2018 – Entrinsic Health Solutions (EHS), an innovative health sciences company, today announced that they have entered into a partnership with Nestlé Health Science (NHSc), a global innovative leader pioneering premium-quality, science-based nutritional health solutions. The partnership gives NHSc the exclusive rights to market EHS’s enterade® product.

Disclaimer

Please note this is not a recommendation to go out and buy the product. It is actually described as a ‘medical food’ and is formulated to be consumed or administered under the supervision of a physician.

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I now take food with my medicine!

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

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

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

Apixaban (Eliquis). To prevent a 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!

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

After 7 years of avoiding pancreatic enzyme replacement therapy (PERT), I finally asked for some on a trial basis at the end of 2017. To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs). I’ve always known I’ve had some digestive issues related to malabsorption. However, I’m not losing weight – this has been stable for some years (but see below). Plus my key vitamin levels (B12 and D) are in range. However, I had been struggling with a lot of bloating issues, thus the trial. You know me, I like to research and analyse such things! I’ve actually written about a lot of these issues in my Nutrition series ….. so this is now ‘Article Number 5’.

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

Background

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

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

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

Pancreatic Enzyme Replacement Therapy

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

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

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

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

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

Frequently Asked Questions (FAQ)

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

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

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

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

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

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

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

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

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

Supplementary Questions:

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

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

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

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

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

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

Supplementary Questions

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

“see question 5”.

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

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

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

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

Supplementary Questions

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

“see question 11”

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

“See question 11”

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

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

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

Supplementary Questions:

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

“see question 11”

4b. What is a snack?

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

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

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

Supplementary Questions:

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

“Timing doesn’t matter”

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

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

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

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

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

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

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

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

Supplementary Questions:

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

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

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

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

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

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

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

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

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

Supplementary Questions:

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

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

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

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

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

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

Supplementary Questions:

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

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

SUPPLEMENTARY QUESTIONS AT THE END

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

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

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

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

Summary

I’ve always known about issues such as steatorrhoea and vitamin/mineral deficiency. My weight is fine but very happy to trial PERT to see the differences. I made a mistake of starting the capsules on Dec 23rd just before Christmas – it made for an interesting week! Early days so far but I’m getting used to taking them (and remembering to take them ….). Still seeing signs of steatorrhoea but am tracking this against diet. Not seeing any change to stool frequency. I would appear to be belching more though! I will keep this post live as I learn more.

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

UPDATE 1st Feb 2019. After 1 year, I’m not sure if there has been any difference to signs of malabsorption with Creon, although the supplement did help with weight gain in the period Oct – Dec 2018 after a dose increase. I had lost weight earlier in 2018 due to a bad chest infection and was having trouble regaining it. Despite the success with the weight gain, that is no long an issue, so I commenced a 3 month trial of Nutrizym to see any change in intermittent but frequent steatorrhea, which potentially indicates a continuing malabsorption issue.

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Neuroendocrine Cancer – surveillance and follow up

If I had a pound for every time I’ve said “make sure you get good surveillance and follow up”, I’d have a lot of pounds! Most Neuroendocrine Tumours are slow-growing and they can be difficult to diagnose due to their sneaky nature. Some can be just as sneaky beyond diagnosis though. The best way to combat that is through regular surveillance or ‘follow-up’. There are actually guidelines and recommendations for follow-up on the main NET specialist societies such as ENETS, NANETS and UKINETS. There’s others including in USA, the NCCN also have a set (and no surprises that the different organisation guidelines can often differ due to the healthcare systems in place). For more detailed or the latest guidelines content, you may need a login or in one instance (ENETS) a membership subscription.

The type and frequency of surveillance will depend on a number of factors, including but not limited to; NET type, primary location, stage and grade. Worth also noting that these are guidelines and physicians will often take many factors into account in deciding on the frequency and content of follow up surveillance.

Let me also tell you that there isn’t really total common ground on exactly what that should be, although to be fair there’s much more agreement than disagreement. There’s even occasional mentions of “not enough data” to be able to say what the surveillance should be in certain scenarios – it’s not an exact science. So surveillance can be anything from monthly to recommended intervals such as 3 months, 6 months, 12 months, 3 years and I’ve even read something which said “no specific follow-up strategy has been recommended” (e.g. ENETS “curative resection of an Appendiceal NET less than 1cm by simple appendectomy“). Often a patient will need to advocate to get the right attention. Knowing what the guidelines are for your situation is a good start.

So what sort of surveillance might be needed?

I think the definition of surveillance is actually wider than the guidelines infer. In addition to the planned follow-up surveillance, I also think there are checks that might be described as ‘opportunistic’. A simple example … if a nurse visits you at home, he or she might ask how things are. Similarly if you visit a GP/PCP, this could be an opportunity to assess the issue you are having against your medical history. Again, if you call your NET specialist or NET Specialist Nurse, this could be another opportunity to assess a problem, albeit over the phone. The other surveillance I would like to see more ‘formalised’ would be the surveillance of the consequences of cancer and it’s treatment – this is a huge unmet need in many cancers. Examples include (but are not limited to) the issues of vitamin & mineral deficiencies and gastrointestinal malabsorption.

However, the documented and objective surveillance methods are really important and can be very similar to those which were used to diagnose you. These are…..

Scanning

Scanning is very important because the locations of tumours should already be documented and can therefore be tracked, or in the case of an unknown primary, continue to look. Scans are looking for tumours or suspicious objects and any progression of known tumour sites. There are different scans for different purposes and even for different parts of the body and NET type. Check out my article “If you can see it – you can detect it“ – click here. The Ga68 PET scan is becoming more available – click here.

Tumour Markers and Hormone Levels

You will have baseline test results which will be compared at each planned surveillance opportunities. Whilst there are common tests available, some types of NETs may need particular tests, especially if you have one or more of the NET Syndromes producing one or more of the offending hormones. These tests may even be required on an ad hoc basis if symptoms worsen. I have a fairly comprehensive article on this subject – click here. It’s also possible that a new biopsy might be necessary (perhaps following a scan) and this may even lead to a new grading on the basis that the score might turn out be higher than the baseline grade.

Misc Tests

NETs are a heterogeneous group of malignancies so I guess some people have additional tests alongside their main tumour markers and hormone levels. I have the routine blood levels alongside my markers, that’s pretty standard I think. I also get my thyroid levels checked due to a lesion currently under watch and wait. Read about his here. Due to surgery and malabsorption issues, I also get regular vitamin checks, in particular B12 and D. Read here to see why this is important. As someone who was initially diagnosed with ‘Carcinoid Syndrome’ alongside my NET, I normally get an annual Echocardiogram to check for Carcinoid Heart Disease – they had removed that earlier this year from my surveillance but it’s now back as a precaution due to the discovery of some fibrosis growth in my retroperitoneal area. You may also be monitored for ‘at risk’ or comorbidity checks such as the thyroid.

Listen to your body

I also have a personal theory that patients are doing surveillance on a daily basis. For example, I actually maintain a diary briefly listing things such as sleeping patterns, what I’ve eaten, bathroom activity, weight, and some other stuff including particular comorbidities that might or might not be related (if not, then it’s also useful for any resulting GP/PCP appointment). That sounds like a lot of work but actually only takes me one minute each day. I’m really looking for patterns. If I think there is a pattern or a connection, I take this data to any appointment or contact the NET Nurse for advice or even just a sounding board. I can’t beat up my medical team for not spotting something where my input would have been important. I already learned that lesson prior to diagnosis.

Summary

A lot of people don’t like living in a surveillance society. Me? I’m perfectly happy about it – it will keep me alive longer. And if ‘Big Brother’ is a NET specialist, even better!

Always ask what your follow-up regime will be – this cancer can be SNEAKY.

Thanks for reading

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

Thanks for reading

Update: Management of Neuroendocrine Tumors

This is an excellent and positive video based overview of where we are with the Management of NETs. This is a presentation from a NET Specialist (who some of you may know) presenting to a “GI Malignancies” conference. This is therefore not only awareness of NETs, it’s also some good education for non NET GI experts who may only know the very basics. Useful for patients too! I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles.

The classification picture is good as it explains the different facets of NETs and how NETs are classified and categorised in a general way – not seen it done this way before. Slightly out of date as it does not adequately convey the possibility of a well differentiated high grade recently classified by the World Health Organisation – read more here.

Amazingly it is delivered without using the word ‘carcinoid’ other than in reference to syndrome, indicating it can be done and is something also being reflected in all my posts to ensure they are up to date with the latest nomenclature. It’s also a good example for GI doctors as this branch of medicine is often involved in NET diagnostics and surveillance.

Excellent update of all the trials which have introduced treatments in the last decade.

Great update and worth the 30 minutes it takes to watch – you can view it CLICK HERE.

All graphics courtesy of www.oncologytube.com

Thanks for reading

Ronny

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Living with Neuroendocrine Cancer – the 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:

Glucagonoma – a type of functioning pNET can often come with dermatological issues.
Allergies (including from foods)
Mastocytosis – interesting this site recommends marker testing to rule out Gastronomas (Zollinger-Ellison Syndrome), Carcinoid Syndrome and Pheochromocytoma
Histamine, Bradykinin or other Tachykinin (i.e. substance P) secreting NETs
Of course there is a Neuroendocrine Carcinoma of the skin known as Merkel Cell Carcinoma – more of a skin lesion effect than regular dermatological issues.

Can NETs be cured?

OPINION:

“Cured” – In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you’ve been cured.

I’ve been living with Neuroendocrine Cancer for 8 years so I must be cured, right? Unfortunately not as straightforward as this, and I’m guessing this is the case for many cancers. Doctors clearly need to be careful when saying the word “cured‘ even if there is a small likelihood that a cancer will recur. There’s plenty of ‘conservative’ and alternative terms that can be used, such as ‘stable’, ‘no evidence of disease (NED)’, ‘in remission’ or ‘complete response’. However, I don’t see the latter two much in Neuroendocrine disease circles.

So with all these ‘ifs’ and ‘buts’, what exactly is a cure?

Answering this question isn’t a simple case of ‘yes’ or ‘no’, because it depends on the way that the term ‘cancer’ is defined. It should actually be viewed as an umbrella term for a collection of hundreds of different diseases. They all share the fundamental characteristic of rogue cells growing out of control, but each type of cancer, and each person’s individual cancer, is unique and comes with its own set of challenges.

That’s why it’s very unlikely that there will be one single cure that can wipe out all cancers. That doesn’t mean individual cases of cancer can’t be cured. Many cancers in fact already can be. Scientists aren’t actually on the hunt for a ‘silver bullet’ against all cancers, Quite the opposite. The more scientists get to know each type of cancer inside and out, the greater the chance of finding new ways to tackle these diseases so that more people can survive. Thanks to a much deeper understanding of cell biology and genetics, there exist today a growing number of targeted therapies that have been designed at a molecular level to recognise particular features specific of cancer cells. Along with chemotherapy, surgery and radiotherapy, these treatments—used singly and in combination—have led to a slow, but steady, increase in survival rates. You can definitely count Neuroendocrine Cancer in that category.

Cancer is seen today less as a disease of specific organs, and more as one of molecular mechanisms caused by the mutation of specific genes. The implication of this shift in thinking is that the best treatment for, say, colorectal cancer may turn out to be designed and approved for use against tumors in an entirely different part of the body, such as the breast. We’re certainly seeing that with certain targeted therapies and more recently with Immunotherapy.

Surely a cure is more possible if cancer is diagnosed earlier?

To a certain extent this is true for many types of cancer, not just for NETs. In fact the same scientists did say ….”We detect those attacks when they’re still early, before the cancers have widely spread, at a time when they can still be cured simply by surgery or perhaps surgery and adjuvant therapy, which always works better on smaller tumors.”.

What about Neuroendocrine Tumors (NETs)? Clearly I’m not qualified to make such statements except to say that I am of the opinion that earlier diagnosis is better for any curative scenario. When you read NET guidelines (ENETS/NANETS etc), the word ‘cure’ and ‘curative’ is mentioned in relation to surgery. Bearing in mind that our most expert NET specialists are involved in the drafting of these guidelines, perhaps we should pause and think before dismissing these claims. Having checked ENETS publications, I can see it’s related to certain conditions and factors such as localisation within the organ, tumour size, good resection margins, and a suitable follow-up surveillance.

Clearly with advanced disease, the cancer becomes incurable but treatment for many being palliative to reduce tumor bulk and reduce any symptoms and/or syndrome effects. Despite this, the outlook for metastatic NETs at the lower grades is good. While we’re talking about palliative care, do not confuse this with end of life, that is only one end of the palliative spectrum. It can and is used at the earliest stage of cancer.

Immunotherapy will eventually cure cancer, right?

Immunotherapy will play a huge part in cancer treatment in the future, that we know. But to suggest that it’s a cure is probably overstating its current success. Neuroendocrine Cancer has not been forgotten – you can read more about Neuroendocrine Cancer and Immunotherapy here.

I heard the Oncolytic Virus at Uppsala is a cure for NETs?

There is currently no scientific evidence that the Oncolytic Virus (AdVince) can cure humans with Neuroendocrine Cancer. So far it has only been proven in destroying neuroendocrine tumours in mice. The Oncolytic Viruses developed in Uppsala are now being evaluated in phase I clinical trials for neuroendocrine cancer. If you’re not up to speed with this trial, read more here – Oncolytic Virus Uppsala

Isn’t prevention better than a cure?

This old adage is still relevant BUT latest thinking would indicate it is not applicable to all cancers. Scientists claim that 66% of cancer is simply a form of ‘bad luck’ and if the claim is accurate, it follows that many cancers are simply inevitable. The thinking suggests that random errors occurring during DNA replication in normal stem cells are a major contributing factor in cancer development confirming that “bad luck” explains a far greater number of cancers than do hereditary and environmental factors. This scientific thinking is a tad controversial so it’s worth remembering that even if, as this study suggests, most individual cancer mutations are due to random chance, the researchers also admit that the cancers they cause may still be preventable. It’s complex!

The newspapers are always talking about breakthroughs and cures for cancer?

Newspapers looking for a good headline will use words such as ‘cure’. Sadly, headlines are generally written by sub-editors who scan the article and look to find a ‘reader-oriented angle’ for the heading. They either can’t or don’t have time to understand what’s actually being said. Unfortunately this then leads to people sharing what is now a misleading article without a thought for the impact on those who are worried about the fact they have cancer and whether it can be cured or not. There’s also a lot of fake health news out there – check out my article series about the problems with the internet and ‘Miracle Cures’.

To cure, they must know the cause?

To a certain extent, that’s very accurate. Have you ever wondered what caused your NETs? I did ponder this question in an article here. The only known cause of NETs is currently the proportion of patients with heredity syndromes – see my article of Genetics and Neuroendocrine Cancer. Interestingly, the NET Research Foundation recently awarded funding to look at the causes of Small Intestine (SI) NETs (one of the most common types). A scientific collaboration between UCL, Dana-Farber Cancer Institute, UCSF Medical Centre and the UCL Cancer Institute / Royal Free Hospital London. The team’s approach has the potential to identify inherited, somatic (non-inherited) genetic, epigenetic and infectious causes of SI-NETs. The research is questioning whether SI-NETs are caused by DNA changes in later life or by aberrant genes inherited at birth; environmental influences or infectious agents – or is it a combination of all these factors? Very exciting. Read more here.

What would a cure mean to those living with NETs?

This is something that has crossed my mind, even though I don’t believe it will happen in my lifetime. I guess it would be good to get rid of the known remnant tumors left behind from my treatment (and any micrometastases currently not detectable). However, many NET patients are living with the consequences of cancer and its treatment, including surgery, chemotherapy, biological therapy, somatostatin analogues, radionuclide therapy, liver directed therapy, and others. Many of these effects would remain – let’s face it, a cure is not going to give me back bits of my small and large intestine, liver and an army of lymph nodes. So support for those living with NETs would need to remain despite a cure.

Summary

The emotional aspect of the word ‘cured’ seems to be an issue across many cancers and it’s certainly very controversial in NET circles. The world has still not cured the many cancers that exist. But over the next five to ten years the era of personalised medicine could see enormous progress in making cancer survivable. I think both doctors and patients need to take a pragmatic view on the ‘cured’ word and to end this article I wanted to share an interesting quote I found whilst researching.

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.

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!

Please Share this post

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.

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.

	Ever wondered what caused your NET? My latest published article pondering why people get NETs. This generated a lot of discussion – check out the Facebook post here.
	Let’s Raise our ‘Sites’ is a new awareness campaign to focus on the plain and often ignored fact that Neuroendocrine Cancer can start anywhere in the body. Read more 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.
	NETwork with Ronny © – Community Newsletter AUGUST 2017. My August 2017 newsletter ICYMI.
	Your favourite posts. All posts with viewing figures above 2000.
	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.

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).
Twitter – 4153 / 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		2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis		1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had		1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor		1,253
Neuroendocrine Cancer – Incurable vs. Terminal		1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes)		985
I’m still here		869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption		846
Living with Neuroendocrine Cancer – Home Page		824
Ignore this post about Neuroendocrine Cancer		763
The Human Anatomy of Neuroendocrine Cancer		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!

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.

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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).
Twitter – 4091 / 3160 Follow me here @RonnyAllan1 / @NETCancerBlog
Total Blog Views: 360875
Blog with most views: 12568 – 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		2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis		1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had		1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor		1,253
Neuroendocrine Cancer – Incurable vs. Terminal		1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes)		985
I’m still here		869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption		846
Living with Neuroendocrine Cancer – Home Page		824
Ignore this post about Neuroendocrine Cancer		763
The Human Anatomy of Neuroendocrine Cancer		759

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!

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.

At home with Lanreotide. News of an Ipsen sponsored at home nurse injection service. Let me know about your own experience with at home services so I can update my blog if necessary.

The very latest on NET Grades and Stages. Includes updates from WHO 2017.

Don’t believe the hype – 3 more NET myths added.

NETwork with Ronny © – Community Newsletter JUNE 2017. My June 2017 newsletter ICYMI.

Your favourite posts. All posts with viewing figures above 2000.

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

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’)
Twitter – 4000 / 3095 Follow me here @RonnyAllan1 / @NETCancerBlog
Total Blog Views: 337313
Blog with most views: 12323 – 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: 20498 in July 2017. Why the spike? … these blogs here:

Home page / Archives		2,482
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis		1,418
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had		1,326
Diagnosed with Neuroendocrine Cancer? 10 questions to ask your doctor		1,253
Neuroendocrine Cancer – Incurable vs. Terminal		1,212
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes)		985
I’m still here		869
Neuroendocrine Cancer Nutrition Blog 2 – Gastrointestinal Malabsorption		846
Living with Neuroendocrine Cancer – Home Page		824
Ignore this post about Neuroendocrine Cancer		763
The Human Anatomy of Neuroendocrine Cancer		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

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

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

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

Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)

On the day I was diagnosed, I hadn’t really thought about questions, the only one I actually remember asking was “how long do I have left to live” (I watch too many movies!). On the day of diagnosis and a period beyond, people tend to feel emotions of shock, denial, anger and sadness, before going on to accept their situation. Yes, I ‘googled‘ but not a great deal really – although some things I found did frighten me. I wish I had found this article way back then.

As things progressed in the weeks after ‘D-Day’, I started to work out the sort of things to ask but even then it was limited. I had been referred to an experienced NET team so I felt confident they would do whatever needed doing. In hindsight, I can now think of a quite a few questions I should have asked. That said, I suspect my team probably gave me the answers without having been asked the questions!

My blogging efforts have turned into a ‘Community’ of sorts. Consequently, I’m contacted daily from people finding me on the web. Many of these people are at the pre-diagnosis or initial phase. Many are undiagnosed. Most are looking for information and some sound like they are already at the ‘acceptance stage’; some are frightened about the future, some are angry because they think they are not being told important information and some also feel they have been messed about or ‘fobbed off’ by their doctors. Of course I’m happy to help but only after reminding them that I’m just a wee Scottish guy with the same disease!

I have to say that some people arrive on my site without a diagnosis but often seem to be very well prepared – the power of the internet I suspect. The questions I mostly get involve finding experts and then what questions to ask them.

Finding experts

As an extra bonus to this post, I offer you a starting point for the best places I know for finding NET expertise:

Europe – here at ENETS: European NET Centres of Excellence

UK – here at UKINETS: UK NET Centres

USA:

One US center is now the first to achieve a European NETs Center of Excellence accreditation – read more hear about University of Iowa Holden Comprehensive Cancer Center – click here
NANETS have listed “NET Centers” here – NANETS NET Centers and Clinics
The NET Research Foundation as they also have a ‘Doctor Database’ section which differs slightly from CCF below.
Here at Carcinoid Cancer Foundation – Find a Doctor

Australia – here: Australian NET Doctors

New Zealand – Dr Ben Lawrence, based in Aukland.

Canada (from patient knowledge):

Dr. Simron Singh at Sunnybrook in Toronto
Dr. Shereen Ezzat at Princess Margaret in Toronto (PMH)
Dr. McEwan, The Cross Clinic, Alberta?
Dr Kavan at Montreal Jewish General Hospital (Oncology)
Dr Buteau / Beauregard at Quebec Hotel Dieu (Radiation Oncology (PRRT, Ga68)
Dr Rivera at Montreal General Hospital (Endocrinology)
Dr Metrakos at the Montreal Royal Victoria Hospital (Surgeon) sees a lot of NET patients
On the French side Dr Andre Roy at the CHUM in Montreal (surgeon) also sees a lot of NET patients
Dr. Jamil Asselah also treats net patients. He is an oncologist….Quebec
Michael Sawyer at Cross Clinic in Alberta Edmonton.
Drs. Parkins, Card, and Paseka at the Tom Baker CC in Calgary.
London Ontario: Dr. David Laidley, Dr. Robert Reid in the Neuroendocrine Clinic at London Regional Cancer Program and Dr. Daryl Gray, Surgeon.

Russia – Clinical Oncology Research Institute, N. N. Blokhin RCRC RAMS, Address: 24, Kashirskoye sh., Moscow, 115478, RF. NET specialist Alla Markovich

In my Group – ask other patients: Click here to join.

Neuroendocrine Cancer – 10 questions to ask your specialist

Many people ask me what sort of questions to ask and because NETs is such a diverse bunch of diseases, that leads to me ask them a series of questions to ascertain what they might consider asking. I’m not surprised to find some are unable to answer my questions and so those then become some of their questions to ask!

Also, questions don’t end at the diagnosis phase, they continue and in fact, some of the answers to the questions below, may bring up new questions in your mind. Some of these questions can be asked time and time again in the event of issues downstream.

If you’re currently confused about the essential facts of your condition, you’re not alone. In a recent study, almost half of cancer patients did not know basic stuff such as grade and stage of cancer, and after their initial treatment, whether they were free of disease or in remission.

Pre-question Check

For those entering or are recently just beyond the diagnostic phase, you may find certain questions cannot yet be answered without further test results etc. However, if the answer is not yet known for whatever reason, at least you have it on your list for follow up appointments. Consequently, I’ve constructed this list of questions that should function as a generic set. There may also be ‘specific to country’ questions such as insurance cover in addition to this suggested list. Of course, some of you may not want the answer to so certain questions. That’s perfectly understandable, so don’t ask!

1. Where is my primary tumour and what type of NET is it?

This is a fundamental question and it’s likely many will already have some inkling about location and perhaps a type. The difference between NETs and other types of cancer is the primary can be found wherever there are Neuroendocrine cells rather than a specific part of the anatomy in terms of naming the type of cancer, i.e. a NET of the pancreas is not Pancreatic Cancer.

The type of NET is key as it will drive a lot of other stuff including treatment. Location and type of NET are not always aligned, for example, you may have a NET in your Pancreas but there are several types of Pancreatic NET (or pNET) and these may depend on identification of a particular hormone (see syndrome below). Many NETs are non-functional (there is no oversecreting hormone).

For some the primary will not yet be found (i.e. cancer of unknown primary or CUP). There may also be multiple primaries.

2. What is the grade and differentiation of my tumour(s)?

Another fundamental question as this defines the aggressiveness of the disease and is absolutely key in determining overall treatment plans. Treatment plans for poorly differentiated can be very different from well differentiated. Read more here – Grading and here – Benign or Malignant

3. What is the stage of my disease?

Fundamental to understanding the nature of your disease. Stage confirms the extent of your disease, i.e. how far has it spread. Again this will drive treatment plans and long-term outlooks. Scans are really important in determining the Stage of your cancer – check out my scans post here. Read more here on Staging

4. Do I have a NET Syndrome?

Many NET patients will have been experiencing symptoms prior to diagnosis, perhaps for some time. It’s possible these symptoms form part of what is known as a ‘Syndrome’ and there are several associated with NETs. Syndromes are mostly caused by the effects of over-secretion of hormones from the tumours, a hallmark of Neuroendocrine disease. Carcinoid Syndrome is the most common but there are many more depending on the primary location. Read more here – NET Syndromes.

5. What is my treatment plan, and what are the factors that will influence my eventual treatment? When will I start treatment

This is a very complex area and will depend on many factors. Thus why your specialist may not have the answers to hand. Decisions on treatment are normally made by some form of Multi-disciplinary Team (MDT). Many people diagnosed with cancer expect to be whisked away to an operating theatre or chemotherapy treatment. However, for many this is not what actually happens. Depending on what testing has been done up to the actual diagnosis, it’s possible that even more testing needs to be done. Additionally, for those with an accompanying syndrome, this will most likely need to be brought until control before certain treatments can be administered; and even then, there may be checks to make sure the treatment will be suitable. Sometimes it’s a case of ‘Hurry up and wait’. My first treatment was 6 weeks after diagnosis and that was designed to control my syndrome ready for surgery which was undertaken 14 weeks after diagnosis. It’s also possible you will be placed on a ‘watch and wait’ regime, at least to begin with.

6. Can you comment on the potential for my type of NET to be related to any familial or genetic aspects of cancer?

A small percentage of NETs are hereditary/genetic in nature. This is mostly associated with those who have Multiple Endocrine Neoplasms (MEN) syndromes 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, pituitary, Pheo/Para and MTC tumours, will have any hereditary or genetic conditions, many will simply be sporadic tumors.

7. Will you be able to get rid of all my disease?

This is a really difficult question for any specialist, even a Neuroendocrine expert. All published articles on NETs will say they are a heterogeneous collection of diseases (i.e. consisting of dissimilar entities) which makes this question (and others) difficult. I have read articles written by the world’s foremost NET experts and they all have the word ‘curative’ mentioned in various places. So I guess in particular scenarios with certain NETs, and if the disease is caught early enough, that possibility exists. However, for many, the disease could be incurable, particularly where there is distant metastasis. But, the disease has many treatment options for most types and for many it is possible to live as if it were a chronic condition. I call it ‘incurable but treatable’. Read more here – Incurable vs Terminal

8. What Surveillance will I be placed under?

Again, this is very individual in NETs and is mainly dependent on type of NET, grade and stage and how the patients reacts to treatment. This may not be known until you have undergone your initial treatment. For example, surveillance scans can be any period from 3 months to 3 years depending on tumour type(location) and stage/grade. Marker testing tends to average around 6 monthly but could be more or less frequently depending on what’s going on. Read more here – click here

9. Will I receive support and specialist advice after my treatment?

Let’s not be afraid of the word ‘Palliative’, it does not always mean ‘end of life’ care. Another example is nutrition. Many people with NETs, the condition in combination with the side effects of treatment may necessitate an alteration of diet and this is a very individual area. I would also emphasise that dietitians not well versed in NETs might not offer the optimum advice. Read more – My Nutrition Series.

10. How will treatment affect my daily life?

This is a question that many people miss but it’s becoming more important as we all live longer with cancer Again, this may not be possible to answer immediately but perhaps this question could be reserved once you know which treatment(s) you will be receiving. All treatment comes with side effects and can last for some time or even present with late effects after some years. The ‘consequences’ of cancer treatment need to be factored in earlier so that the necessary knowledge and support can be put in place. See also Unmet Needs for NET Patients

I suspect others will have suggestions for this list so feel free to submit these to me. I quite often refresh my posts over time.

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

OPINION.

There’s a lot of inaccurate and out of date information out there. Some of it is propaganda but most is a combination of misunderstanding and patient forum myth spreading …….

Myth 1: All Neuroendocrine Tumours are benign

Not true. By 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.

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.

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.

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“.

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.

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.

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.

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.

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.

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.

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.

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.

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 and please don’t use the term on my social media sites, I refuse to perpetuate this outdated dogma.

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

Not true. Multiple Endocrine Neoplasia are syndromes and inherited disorders. You can 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

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

Myth 19: Serotonin is found in foods

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

Myth 20: NETs cannot be cured

Not true. If caught early enough, some NETs can be treated with curative intent (totally resected) 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.

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.

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

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

Hi NETworkers!

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

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

with Grace Goldstein from Carcinoid Cancer Foundation

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

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

New Blogs Published

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

My February Newsletter!

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life. A key campaign for 2017 in the area of better quality of life and unmet needs for patients (a key INCA initiative). Already over 1000 views.

Other News in Mar 2017

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

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

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

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

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

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

Instagram

Figures

Facebook – 4350. 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’)
Twitter – 3754 / 2883 Follow me here @RonnyAllan1 / @NETCancerBlog
Total Blog Views: 256,111
Blog with most views: 8052 – 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: 19,186 in Jan 2017. Why the spike? …. “The Anatomy of Neuroendocrine Cancer” and “Ignore this post about Neuroendocrine Cancer“

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

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

Thanks for your great support in March.

Ronny

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

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My Diagnosis and Treatment History

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In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly. However, the pressure needs to stay on, all patients, regardless of where they live, need access to the best diagnostics and treatments for them; and at the requisite time. This alone is one very big unmet need in a whole range of countries still lacking.

The ‘War on Cancer’ forgot about Neuroendocrine

The ‘war on cancer’ has been around for the last 50 years, it’s still being waged. There are now more ‘fronts’ and it’s taking longer than thought to find the ‘cure’. Despite this 50 year war, it seems like there’s only been a war on Neuroendocrine Cancer for the last 10 of those years. I guess they were focused on the big cancers and/or the seemingly impossible ‘universal cure’. Prior to that, for NETs, there is only evidence of some skirmishes, more like guerrilla warfare. Now we have a developed nuclear capability! I believe the turning point was the SEER database work carried out by Dr James Yao in 2004 who confirmed the incidence had grown by 400% in 3 decades, i.e. confirming it was no longer rare. The rise of both incidence and prevalence was then amplified in the follow on ‘2012’ study (Desari et al) which confirmed a 640% increase in 40 years.

Let’s not forget about the consequences of cancer

It is true that half of people diagnosed with cancer now survive for at least ten years. Many live for years with cancer, on ‘watch and wait’ or going through various treatments and tests; their future remaining uncertain. For this group, and even for those whose treatment has successfully removed or shrunk their tumour, the struggle with the consequences and late effects of cancer and its treatment can last for years. Many Neuroendocrine Cancer patients fit into this category.

There’s a lot of work going on within all cancer communities to address the unmet needs of cancer patients who are now living with cancer rather than dying of it. Clearly we need this type of support in the NET world. The issue has been discussed at ENETS for the last two years and I was pleased to have asked the very first question about this particular unmet need, emphasising we need more support for those living with Neuroendocrine Cancer, including research into their common issues. I’ve yet to see any concrete output from the two year’s worth of campaigning.

FB_IMG_1489175031510 — The first question to the first ever joint patient-physician symposium

Unmet Needs for NETs

So, there’s a lot of treatments for many types of Neuroendocrine Cancer out there, just not everyone has access to them – therefore an unmet need at the international level. Others are earlier diagnosis, access to multi-disciplinary teams (MDT), ability to access quality information at diagnosis and beyond including clinical trials, funding, accurate national registries to improve statistics and more treatments fot some of the less common types. One area where I feel there is a huge unmet need is in the area of patient support following diagnosis. Although some countries are more advanced than others in this area, even in the so-called advanced countries, there are huge gaps in provision of long-term support for those living with Neuroendocrine Cancer. For example, physicians need to focus more on:

Late diagnosis. People will be dealing from the effects of late diagnosis which has resulted in metastatic disease – and some people will have been fighting misdiagnosed illnesses for years. That takes its toll.

Consequences of Surgery. People will have had surgery which in many cases is life changing – various bits of the gut (gastrointestinal tract) are now missing, lungs are now missing – many other locations will have been excised or partly excised. These bits of our anatomy were there for a purpose and QoL takes a hit when they are chopped out.

Inoperable Tumours and Syndromes. People will be dealing with remnant and/or inoperable tumours which may or may not be producing an associated NET syndrome (some of the symptoms can be rather debilitating in the worst cases)

Consequences of Non-surgical Treatment. Additionally, people will be dealing with the side effects of multi-modal non surgical treatments, such as somatostatin analogue hormone therapy (Octreotide/Lanreotide), chemotherapy, biological therapy (mTOR inhibitors) (i.e. Everolimus (Afinitor)), biological therapy (protein kinase inhibitors (i.e. Sunitinib (Sutent)), radionuclide therapy (i.e. PRRT). Whilst it’s great there are a wide range of therapies, they all come with side effects.

Secondary Illnesses and Comorbidities. Some people will have gained secondary illnesses in part due to the original cancer or treatment – e.g. somatostatin analogue hormone therapy can have a side effect of increasing blood sugar to diabetic levels. There are many other examples.

Finances. NET Cancer can be an expensive cancer to treat and this is exacerbated by the length of time the treatment lasts. A highly prevalent cancer, treatment is for life. It follows that NET Cancer is an ‘expensive’ cancer to have. Whilst most people have access to free public services or private insurance, many people will still end up out-of-pocket due to their cancer.

Emotional Aspects. Many NET patients are kept under surveillance for the remainder of their lives. With that comes the constant worry that the cancer progresses, tumours get bigger, new tumours show up, treatments are denied (i.e. PRRT in the UK). It’s no surprise that anxiety and depression can affect many patients in these situations. To some extent, there can be a knock-on effect to close family members and carers where applicable.

As I said in my question to the panel, even if you found a cure for NETs tomorrow, it will not replace the bits of my GI tract excised as part of my treatment. For many people, even ‘beating’ cancer might not feel much like a ‘win’. It’s a two-way street though – we need to work with our doctors, trying to change lifestyles to cope better with some of these issues. This is why it’s really important to complete patient surveys. However, my point is this: more research into some of these issues (e.g. nutrition, optimum drug dosage, secondary effects) and earlier patient support to help understand and act on these issues, would be good starters. I think some centres are doing elements of this type of support but we need a guideline generating in national and international groupings so that that others can be persuaded to formally introduce it.

“Adding life to years is as important as adding years to life”

Thanks for listening

Ronny

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

Please Share this post

Hi NETworkers!

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

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

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

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

New Blogs Published

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

My Jan Newsletter!

Neuroendocrine Cancer: To cut or not to cut? – This blog had a fantastic response and it’s clearly a topical subject! I had more people contact me privately rather than publicly which was interesting.

Things not to say to someone with cancer – topical subject, so many diverse opinions! Great though provoking video too.

25 Life Lessons From a Two-Time Cancer Survivor – a diversion to someone else’s post but another blog which had a great response.

Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD – very useful progress report from an experienced NET doctor.

It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial) – I had one of those ‘cancerversaries’ with a 5 years since my last (perhaps not final!) surgery. Lymph nodes and thyroid mentioned.

Other News in Feb 2017

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

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

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

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

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

Instagram

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

Figures

Facebook – 4213. 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’)
Twitter – 3684 / 2836 Follow me here @RonnyAllan1 / @NETCancerBlog
Total Blog Views: 239,686
Blog with most views: 7,888 – 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: 19,186 in Jan 2017. Why the spike? …. “The Anatomy of Neuroendocrine Cancer” and “Ignore this post about Neuroendocrine Cancer“

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

For interest the 10 Ten Facebook followers by Country:

Thanks for your great support in February.

Ronny

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

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My Diagnosis and Treatment History

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It’s been 5 years since I saw a scalpel (….but my surgeon is still on speed dial)

5 years ago today, I had a bunch of lymph nodes removed. Two separate areas were resected, only one was showing growth but both were showing up as hotspots on an Octreoscan. I had known since shortly after diagnosis in 2010 that ‘hotspots’ were showing in my left ‘axillary’ lymph nodes (armpit) and my left ‘supraclavicular fossa’ (SCF) lymph nodes (clavicle area). Some 10 months previously, I had a major liver resection and 5 months prior to the liver resection, I had a small intestinal primary removed including work on some associated complications. There had always been a plan to optimise cytoreduction of my distant metastases, it was just a matter of timing. I still can’t get my head round why metastases from a small intestinal NET managed to get to this area but not others!

Distant nodal metastasis treatment

A total of 9 nodes were removed from my left armpit (a very common operation for breast cancer patients). The surgeon had inspected the area and found some were palpable and my normally stable Chromogranin A marker was showing a small spike out of range. During the same operation under general anaesthetic, an ultrasound directed SCF nodal ‘exploration’ was carried out. When biopsied, 5 of the 9 resected axillary nodes were tested positive (Ki-67 <5) but the 5 SCF nodes removed were tested negative. The subsequent Octreoscan still lit up in the left SCF area but the lights on the left axillary area were ‘extinguished’. There is no pathological enlargement or pain in the left SCF area – so this is just monitored.

Side effects

Apart from a very faint scar in the left SCF area, there does not appear to be any side effects from this exploratory surgery. The left axillary area cut is well hidden by hair growth but I do sense a lack of feeling in the area. Additionally, I have a very mild case of lymphedema in my left hand which occasionally looks slightly swollen – the consequences of cancer and its treatment. Fluid build-up, or post-operative seroma, can be a side effect of a lymphadenectomy. In fact, within a month of the operation, I had to have circa 160mls of fluid removed on 4 occasions from my armpit. It was uncomfortable and painful, resulting in additional time off work. The surgeon used a fine needle aspiration to draw out the fluid, a painless procedure. It eventually cleared up and everything was back to normal. The specialist said my left arm would be slightly more susceptible to infections and suggested to avoid using my left arm for blood draws and other invasive procedures and injuries.

Other close calls (“to cut or not to cut”)

I have a 19mm thyroid lesion which was pointed out to me in 2013. This has been biopsied with inconclusive results. Although the thyroid is an endocrine gland, it looks like a non-NET problem so far. Thyroid nodules are in fact very common and statistically, 50-70% of all 50-70 year olds will have at least one nodule present (i.e. if you are in your 50s, there is a 50% chance you will have one nodule and so on). The vast majority will never bother a person while they live. I attend an annual Endocrine MDT where this is monitored in close coordination with the NET MDT. It’s actually managed by the same surgeon who carried out the nodal work above.

I have a 3mm lung nodule, discovered in 2011. Apparently, lung nodules are a pretty common incidental finding with 1 per 500 X-rays and 1 per 100 CT scans finding them. This is monitored and hasn’t changed since noted.

You may also be interested in my post “Neuroendocrine Cancer – to cut or not to cut”

I watch and wait but I also watch and learn. Make sure you are under some form of surveillance.

Thanks for reading

Ronny Allan

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

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My Diagnosis and Treatment History
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Endoscopy for NETs – taking the camera to the tumour

An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom. The mouth route is more accurately called a Gastroscopy and the anal route is called a Colonoscopy (or a reduced version called a Sigmoidoscopy). An endoscope can also be inserted through a small cut (incision) made in the skin when keyhole surgery is being carried out.

Gastroscopy

During a routine 6 monthly check-up at the end of 2016, I mentioned to my Oncologist that I was experiencing what appeared to be very minor heartburn and that it was an unusual symptom for me. He called forward my annual Echocardiogram and also ordered up a Gastroscopy.

I received the Gastroscopy paperwork from the hospital for an appointment on 26 Jan 2017. It offered an option for sedation, either a throat spray to numb the area or a sedative where I would probably not know what was going on. My initial thought was the latter even though it meant a longer visit to the hospital with some other constraints. It also meant I would need to check the sedation to assess the risk of NET Crisis. However, having discussed this issue with the department nurse, I was persuaded to go for the throat spray – apparently 80% of people opt for this method. I just couldn’t resist the statistical challenge! There were many advantages to selecting this option including getting rid of the sedation risk, plus I could walk out of the hospital immediately after the 5 minute procedure. The sedation option meant that I would need to remain in the hospital for an extra hour to recover, not drive for 24 hours and be supervised by an adult for 12 hours.

My blood pressure was checked prior to the procedure and systolic was around 145, 10-20 points above my normal ‘cool as a cucumber’ figure. Clearly, despite my deceptively stoic façade, something was making my heart work faster!

I was really put at ease by all 4 people in the room, two nurses, an endoscopic expert and a technician. However, the procedure itself is not what I would call a ‘breeze’. The throat spray was disgusting and said to taste of rotten bananas but personally I thought it was more like rotten fish! For the first 60 seconds (total guess) I found myself wishing I had gone for the sedation but the next minute was better after I had stopped ‘gagging’ and was now breathing fairly normally. I found swallowing easy despite the tube and a nurse was also extracting excess saliva using a similar tool used in a dental procedure. I was also aware that my eyes were watering! The natural reaction of ‘gagging’ came back at least once but only for a second or two. I would be lying if I said it wasn’t scary at the time.

The procedure seemed to be in parts, he checked the oesophagus, pumped air into my stomach for a better view, sprayed some water (not sure why), took a peek in the duodenum which required an extra swallow from me, using another tool, he took a painless routine sample from the stomach lining to test for CLO (Helicobacter Pylori – a bacterium in the lining of the stomach that can cause peptic ulcers), extracted the air, and then the extraction of the endoscope out from the gastrointestinal tract. These endoscopes really are like swiss army knives!

The best bit was the extraction! The other best bit was when he told me there were no real issues. So it was all worth it in the end! If anyone wants a copy of my comprehensive and easy to read 6 page Gastroscopy guide, let me know.

Colonoscopy

The other main type of Endoscopy is the Colonoscopy which enters the gastrointestinal tract in the opposite direction. I’ve had actually both a Gastroscopy and Colonoscopy before in 2008 before I was diagnosed. I offered the mandatory request to do the endoscopy first if using the same scope 🙂 He’d heard it before! On this occasion I was fully sedated. One minute I was talking to the Gastroenterologist, then the next thing I remember was waking up, job done. Less stressful but more time intensive. That said, the preparation for the colonoscopy is no joke. You can read about this in my blog Colonoscopy Comedy which also includes a light-hearted story about the preparation phase. If you need a laugh, this is really funny.

Although I have not had these, for completeness, I want to mention several associated procedures.

Endoscopic Ultrasound (EUS)

endoscultrasound_2012_1_2_59_117741_f1 — The head of the Pancreas on the left surrounded by the duodenum, stomach to the right

For patients who have, or who are suspected of having pancreatic disease, their doctor may recommend that they undergo a type of procedure called an endoscopic ultrasound, or more often known as EUS. An EUS is a type of endoscopic examination. The EUS is a scan rather than a camera but a camera attachment will be used at some point, perhaps to do additional checks on the way (endoscopic equipment is quite advanced and reminds me of Swiss army knives). It involves the insertion of a thin tube into the mouth and down into the stomach and the first part of the small intestine. At the tip of the tube is a small ultrasound probe that emits sound waves. These sound waves bounce off of the surrounding structures, such as the stomach, small intestine, pancreas, bile ducts, and liver. These sound waves are then recaptured by the probe and converted into black and white images that are then interpreted by your doctor. Because the pancreas sits next to the stomach and small intestine, EUS allows the physician to get very detailed images of the pancreas. This procedure is typically performed in an outpatient setting, and usually takes between 20 and 45 minutes. One of the advantages of performing an EUS is that pancreatic biopsies can be obtained at the time of the examination. These biopsies, often referred to as FNA, or fine-needle aspiration, can allow for your physician to collect tissue samples which can later be analysed under a microscope. Special needles, designed to be used with the EUS scope, allow the physician to insert a small needle through the wall of the stomach or intestine directly into the pancreas. This video explains better: Click here.

Endoscopic retrograde cholangiopancreatography (ERCP)

ERCP is performed on an outpatient basis under sedation (rarely under general anesthesia). Using a “side-viewing” endoscope, called a duodenoscope, the duodenal “papilla”-(a mound-like structure that houses the opening of the common bile duct and the pancreatic duct)- is identified and manipulated. These areas can be examined and x-ray taken of the pancreatic duct, hepatic duct, common bile duct, duodenal papilla, and gallbladder.The endoscope is passed through the mouth and down into the first part of the small intestine (duodenum). A smaller tube (catheter) is then inserted through the endoscope into the bile and pancreatic ducts. A dye is injected through the catheter into the ducts, and an x-ray is taken. Also called ERCP.

Capsule Endoscopy (camera pill)

: “Camera Pill”

Shortly after I was diagnosed, this was mentioned as an option for me as my diagnostic scans were just showing a “mass” and it wasnt 100% clear where my primary tumour was located. It didn’t happen in the end. Capsule Endoscopy involves swallowing a small capsule (the size of the large vitamin pill). The ‘cam-pill’ contains a colour camera, battery, light source and transmitter. The camera takes two pictures every second for eight hours, transmitting images to a data recorder about the size of a portable CD player that patients wear around the waist.

Capsule endoscopy assists in diagnosing gastrointestinal conditions in the small bowel such as: bleeding, malabsorption, chronic abdominal pain, and chronic diarrhoea. Once swallowed the camera moves naturally through the digestive tract. Approximately eight hours after ingesting the camera, patients return to the Endoscopy Unit where the recording device is removed by the nurse, the images are downloaded to a computer and evaluated. The Capsule is disposable and will be passed naturally in the bowel movement.

Sigmoidoscopy

A flexible sigmoidoscopy is a procedure that is used to look inside the rectum (back passage) and lower part of your large bowel (descending colon) and so is like an abbreviated version of a colonoscopy.

Bronchoscopy

Bronchoscopy is a procedure that allows the doctor to examine your trachea (windpipe), bronchi (branches of the airway) and some areas of the lung. A short thin flexible tube with a mini camera built into its tip, called a ‘bronchoscope’, is used for this procedure. The bronchoscope is usually passed through your mouth or nose, into your trachea and bronchi. The doctor can then get a clear view of your airways. During the procedure, the doctor may take samples of tissue (biopsy) or respiratory secretions for examination. Bronchoscopies can also be used for ablation purposes. You may be interested in this award-winning biopsy and ablation service offered by the Royal Free Hospital in London UK – Innovation at Royal Free – Lung Biopsy and Radio Frequency Ablation Service

Thanks for reading about how physicians can take the camera directly to the sites of suspected tumours!

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!

Road ahead closed – Bowel Obstructions

OK – we’ve gone through diagnosis, we’ve gone through treatment and now we need to live with the consequences of cancer and it’s treatment. Not a day goes by when I don’t feel some twinge or some minor pain and I think ‘what was that?‘. Fortunately, many things can just be day-to-day niggles. It’s the cancer …. easy to say, sometimes not easy to prove.

However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel obstruction is quite a scary thought (I suspect this is also an issue for other cancer types). In fact, even before diagnosis, a bowel obstruction rears its head as it can be how the condition is diagnosed in the first place, i.e. pain leads to more pain and that can sometimes result in a visit to the ER/A&E which can very often lead to a scan and an incidental diagnosis of NETs (and I suspect some other cancers).

I guess this isn’t just a threat for those who’ve had intestinal NETs but others in the vicinity of the intestines could also have this issue – the abdominal cavity is full of organs all very closely packed together! Both the small intestine and the large intestine can become blocked and if it can’t be unblocked by non-surgical means, it can become a bit of a drama for the patient. Blockages can be full or partial so it can often be a tough call for the medical team due to the effects of the patient’s existing surgery including but not limited to previous surgical scarring (adhesions), mesentery or retroperitoneal fibrosis complications (read about that by clicking here). Clearing the blockage by non-surgical means is the optimum solution. The presentational symptoms and scans can give immediate clues. Although there are slightly different symptoms for large and small intestine (bowel) obstructions, the key symptoms of a blockage would appear to be:

Feeling bloated and full

Severe abdominal pain

Feeling sick

Vomiting large amounts

Constipation

Looking at some authoritative sites, the logical (and fairly obvious) decision steps seem to be:

Is there an obstruction or is the problem something else?

If an obstruction, where exactly is it?

What is causing the obstruction?

Are there any complications such as adhesions, twisted loops or hernias

Optimum treatment

In 2016, I had 3 bouts of constipation and I confess that a potential blockage did cross my mind on all 3 occasions. However, I was comforted by the fact that I had no nausea and/or vomiting which I suspect is one of the key symptoms indicating a blockage rather than just a sluggish system. Fortunately, on all 3 occasions, the matter settled following a few days of right-sided pain (RLQ). One occasion required lactulose but all three required patience sprinkled with a pinch of endurance! I have to say the lactulose experience was not a good one – fatigue, brain fog and general malaise …..but much better than surgery. If you have issues with ‘fear’ living with cancer, check out my 7 tips article by clicking here.

I’m once again making some adjustments to try to find the magic spot between stool frequency and bulk….. it’s really difficult and not an exact science. I’m suspecting diverticular disease might be playing some part as I was diagnosed with a mild version in 2008 spotted during a colonoscopy (a common problem when you’re over 50). Although that tends to be a left-sided problem, I remain conscious that my ‘new plumbing’ may not be the best representation of a conventional layout!

NET Patient Foundation are really good at producing cards and there’s one for this too! Here’s the back of it here:

Hunting Tumours – Primary vs Secondary

Multiple Primary Tumours

What else helps find a NET?

There are many other clues open to those involved in diagnosing a NET:

Cancers of Unknown Primary

Summary

Please Share this post

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

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

Like this:

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

No thanks for making a right mess inside my body!

No thanks for generating fibrosis throughout my mesentery and retroperitoneum!

No thanks for screwing up some of my hormones

No thanks for the ongoing symptoms and side effects

Surveillance and treatment for life SUCKS!

No thanks for the weight loss

No thanks for the hypothyroidism

No thanks for increasing my diabetes risk

No thanks for making me retire early

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

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What is enterade® ?

What does it do?

Is there evidence that it works?

Can I buy Enterade now?

Further reading:

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Background

Pancreatic Enzyme Replacement Therapy

Frequently Asked Questions (FAQ)

Summary

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So what sort of surveillance might be needed?

Scanning

Tumour Markers and Hormone Levels

Misc Tests

Listen to your body

Summary

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So with all these ‘ifs’ and ‘buts’, what exactly is a cure?

Surely a cure is more possible if cancer is diagnosed earlier?

Immunotherapy will eventually cure cancer, right?

I heard the Oncolytic Virus at Uppsala is a cure for NETs?

Isn’t prevention better than a cure?

The newspapers are always talking about breakthroughs and cures for cancer?

To cure, they must know the cause?

What would a cure mean to those living with NETs?

Summary

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Why did I lose weight?

Why do NET patients lose weight?

Suggested reading for putting weight back after surgery

What about weight gain?

The NETs Jigsaw

Summary

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