Clinical Trial: Advanced Oncology Formula enterade® – a breakthrough for NET Patients?


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.

Further reading:

1. Enterade FAQ – click here

2. A breakthrough for NET Patients. click here.

3. Recent output from ASCO 2018 – click here. (contact data update for 2018)

4. If you are interested in more information about how enterade® works, check out this short video

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.

Thanks for reading

Ronny

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

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

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

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

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

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

 

PERT

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

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

Background

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

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

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

Pancreatic Enzyme Replacement Therapy

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

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

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

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

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

Frequently Asked Questions (FAQ)

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

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

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

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

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

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

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

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

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

Supplementary Questions:

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

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

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

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

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

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

Supplementary Questions

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

“see question 5”.

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

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

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

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

Supplementary Questions

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

“see question 11”

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

“See question 11”

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

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

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

Supplementary Questions:

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

“see question 11”

4b. What is a snack?

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

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

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

Supplementary Questions:

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

“Timing doesn’t matter”

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

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

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

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

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

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

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

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

Supplementary Questions:

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

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

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

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

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

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

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

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

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

Supplementary Questions:

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

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

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

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

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

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

Supplementary Questions:

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

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

  1. SUPPLEMENTARY QUESTIONS AT THE END

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

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

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

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

Summary

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

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

You may also enjoy these articles:

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

“Nutrition Article 2 – GI Malabsorption”click here.

“Nutrition Article 3 – SIBO/Probiotics”click here

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

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

Thanks for reading

Ronny

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

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


 

Neuroendocrine Cancer – surveillance and follow up

surveillance

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 itclick here.  The Ga68 PET scan is becoming more available – click here.

scans for nets

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.

markers

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

Living with Neuroendocrine Cancer – the 7 Year Itch

7 year itch

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

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

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

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:

Thanks for reading – please feel free to share

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

Weight – the NET Effect

Weight – The NET Effect

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

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

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

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

Why did I lose weight?

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

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

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

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

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.

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!

 

NETwork with Ronny © – Community Newsletter SEPTEMBER 2017

Hi NETworkers!

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

NET News

The following news items may be of interest:

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

 

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

Blog Site?  

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

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

 Other Activity

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

Please join my 2017 awareness campaign event here (select ‘Going’)

I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer.  Please also note that I cannot accept telephone calls on a one to one basis.  Also, the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

Awareness Activity in September 2017

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

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

  • Daily Newsletter from my twitter feed (Nuzzel).  There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.  Currently 336 subscribers – up 12% on last month.

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

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

Speaking Engagements

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

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

Social Media and Stats

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

Facebook Milestone.  I would love to achieve 6000 followers by the end of 2017 but this will be a challenge.  The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

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

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

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

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

 

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

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

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

community_titled_transparent_2013-10-22

NETwork with Ronny © – Community Newsletter AUGUST 2017

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

Hi NETworkers!

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

NET News

The following news items may be of interest:

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

What’s happening on my Blog Site?  

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

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

Misc Blog Stuff

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

Other Activity

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

Please join my 2017 awareness campaign event here (select ‘Going’)

I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer.  Please also note that I cannot accept telephone calls on a one to one basis.  However …..the number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

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

 

Awareness Activity in August 2017

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

  • Article features.  I was featured in a well shared and positive article entitled A revolution in the treatment of Neuroendocrine Tumors. A very positive look at the new treatments coming through. I didn’t agree with some of the content but ‘hey ho’ I cannot control what others write.  You can check out the article by clicking here.
  • Twitter. I’m ‘extremely’ active on twitter and I find a lot of my research stuff there. I also use it to support other conditions and it’s mostly returned (i.e. others help with NET awareness and are made aware of NETs in the process).  In Aug, I tweeted 130 times on my personal account which lead to almost 90,000 views.  I was mentioned 94 times by other tweeters and gained 64 new followers.  My tweet “Ignore this post” remains the most tweeted article about NETs ever posted on twitter.  Check it out – click here.
  • Daily Newsletter from my twitter feed (Nuzzel).  There is so much on twitter that I could swamp the community Facebook site so I started a twitter newsletter via an app called Nuzzel which seeks out stuff I normally like. Click this link and sign up if you think this is something you’d be interested in receiving – you don’t need to have a twitter account to read, just sign up with an email.  Currently 294 subscribers – up 10% on last month.  Will you be number 300?
  • WEGO. I continue to be featured by ‘external’ organisations such as WEGO and my PODCAST is reaching new audiences – click here.  The recent awards will continue to showcase my work which has the effect of spreading Neuroendocrine Cancer awareness to NEW audiences.
  • Macmillan Cancer Support.  I’m proud to be a ‘Community Champion’ on the Macmillan Cancer Support Forum helping ‘outliers’ from the NET community there. There are only 27 champions for a site supporting hundreds of thousand patients.  I’ll be reporting more on this in the coming weeks.  This is the biggest cancer support organisation in the UK and I’m intent on developing relationships with various departments in this fantastic organisation.  On August 30th, one of my blogs made their “top picks” generating some NET awareness – check out Living with Cancer – 6 tips for conquering fear
  • Cure Magazine.  I’ve been accepted as a ‘Cure Today’ contributor which means my articles will get a wider distribution than they do now.  I’ve not contributed yet but clearly they will be posted on all my social media outlets for you to read.  Cure Magazine has a readership of 1 million.  Click here to read more.

Speaking Engagements

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

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

Remember …….

Social Media and Stats

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

Facebook Milestone.  I would love to achieve 6000 followers by the end of 2017 but this will be a challenge.  The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

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

Ronny Allan’s Community

Neuroendocrine Cancer Awareness and Networking

Instagram

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

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

Figures

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

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

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

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

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

community_titled_transparent_2013-10-22

NETwork with Ronny © – Community Newsletter JULY 2017

 

Hi NETworkers!

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

NET News

The following news items may be of interest:

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

What’s happening on my Blog Site?  

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

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

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

NET Cancer Blog Activity

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

I continue to receive a steady flow of private contacts, mainly from patients seeking information.  I don’t have an issue with private contact but please note my disclaimer.  Please also note that I cannot accept telephone calls on a one to one basis.  The number of non-patients contacting me for other reasons (mainly to help with something) continues to grow and this is producing some great publicity and awareness.

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

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

Awareness Activity in July 2017

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

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

Speaking Engagements

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

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

Remember …….

Social Media and Stats

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

Facebook Milestone.  I met my target of 5000 followers a few months before my self inposed deadline date.  I’m very grateful!  The Facebook page is now my biggest outlet for awareness and education so please please please recommend this page to anyone you think would be interested.

Instagram

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

Medicine

Figures

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

 

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

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

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Check out my Podcast (click and press play)

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

community_titled_transparent_2013-10-22

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


Adding life to years is as important as

OPINION.  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’. The recently announced Cancer Moonshot initiative is a timely ‘reinforcement’.  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 focussed 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).  To be rare is to ignored, so I don’t understand the motives of those who ignore the indisputable mathematical facts available.

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.

This is why I was very pleased to hear about the new International Neuroendocrine Cancer Alliance (INCA) campaign to not only address the ‘unmet’ needs of NET patients but to undertake to do it alongside NET specialists representing regional groupings.  I was also extremely happy to have been invited as a guest of INCA to attend the first ever joint patient-physician seminar hosted by ENETS followed by the annual INCA summit where doctors were also invited to form a panel for the first session. It’s worth remembering that I’m not part of the INCA alliance, nor do I represent any national organisation on this blog.  I’m simply RonnyAllan.NET  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.

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 within my question to the INCA 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.

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

Thanks for reading

Please Share this post

Ronny

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

Disclaimer

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Sign up for my twitter newsletter

Read my Cure Magazine contributions

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

 

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Lanreotide vs Octreotide

somatuline-depot-injection-vs-sandostatin
long acting Lanreotide (left) – long acting Octreotide (right)

Somatostatin Analogues are the ‘workhorse’ treatments for those living with NETs, particularly where certain syndromes are involved.  So not just for classic NETs with Carcinoid Syndrome but also for treating insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors.

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

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

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

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

So what’s the difference between the two?

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

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

Injection Administration

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

Here are some interesting videos showing and explaining their administration:

Administering a Somatuline Depot (Lanreotide) injection:

Administering a Sandostatin LAR (Octreotide) injection:

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

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

Injection site granulomas (lumps)

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

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

Somatostatin Analogues and raised blood sugar levels

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

Somatostatin Analogues and thyroid levels

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

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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

patients included

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Happy Thanksgiving

thanksgiving

Just a note to say Happy Thanksgiving to my friends in USA or who may be celebrating it elsewhere.  I am so thankful for the support I get from the US who make up the biggest proportion of subscribers to my blog and associated Facebook pageSo I’m thinking of y’all today!

Now …….. I hate to stereotype but I guess a lot of you might be eating turkey today?  No Thanksgiving is complete without a turkey at the table (… so I’m told!).  And also a nap right after it’s eaten….. right?

As you know I like to analyse such things …… Apparently, the meat has a bad reputation for making eaters sleepy, but is there really science to back that up?   My google alerts feed increases around this time of the year due to the connection of turkey with the word ‘serotonin’.  So for me, this is very educational.  Those who read my blog article on the ‘S’ word may remember that tryptophan is one of the bodies amino acids and is partly responsible for the manufacture of Serotonin in our system.  Turkey is said to be high in tryptophan although most say it is no higher than many other meats.  I’ve also heard the stories about how eating too much turkey makes you sleepy. Melatonin is said to be the hormone which helps with sleep regulation and is manufactured from Serotonin (which is manufactured from tryptophan).  However, the articles I read, (one was from the New York Times and one from Time Magazine) both confirm this is not exactly correct with one describing the turkey/sleepy connection as a “common myth” mainly due to the other food and drink consumed at the same time as the turkey  In any case, what’s wrong with an afternoon or evening nap after a traditional meal?

For those worried about eating too much tryptophan, don’t be, all NET nutritionists say you should not be concerned about this and the only food restrictions that apply are right before the 5HIAA test as directed by your local specialist.

Actually I read that turkey is a really healthy meat to eat, it’s low in fat, full of protein and other nutrients including the important B vitamins that NET patients might be at risk of deficiency (B3 and B12). Note to self …… eat more turkey!

Enjoy your Thanksgiving! It’s OK to have a nap too ……

On a personal note, I’m also very thankful to still be here after 8 years!

im-still-here

Thanks for reading

Ronny

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

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My Diagnosis and Treatment History

Sign up for my twitter newsletter

Check out my Podcast Interview (click and press play)

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


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

chemo

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for reading

You may also enjoy these similar and related articles:

Things not to say to a cancer patient – click here

Shame on you! – click here

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

Things are not always how they seem – click here

Not every illness is visible – click here

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – click here

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Ronny

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Did you hear the one about the constipated NET patient?

constipation
did you hear the one about the constipated NET Patient?

In my neck of the woods, “did you hear the one about the ………” is normally a precursor to a witty comment, or a joke.   However, constipation for NET patients is not actually funny – read on.

Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one …..); or as a result of surgery or certain other treatments.  Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect.

I must admit to being surprised to find myself with feelings of constipation from around 4-5 years after my treatment and I set about trying to find out why that might be. To understand why I got to this stage, I assessed the history of my treatment and what I changed in an attempt to improve my Quality of Life (QoL) – I feel there is a strong connection.

When I underwent my primary surgery (Nov 2010), my surgeon said it would take months for my ‘digestive system’ to return to some form of normality.  I soon found out what he meant, I seemed to be permanently affixed to a toilet seat (plenty of reading opportunities though ….. every cloud!).   I suddenly realised that I needed to start looking seriously at my diet.  I did find some improvements by trying to eat things that would bulk up my stools vs trying to avoid things that might increase frequency (i.e. I wanted a reduction in frequency combined with a bulkier stool). Eventually, I settled on a regime for the first couple of years and to be honest, I didn’t need to change my diet in any radical sense.  I was also determined not to take any medication (I was taking enough) and wanted this to work as naturally as possible.

Things were still not ideal and in 2013, I even remember saying to my Oncologist that although I was never misdiagnosed with IBS, I felt like I now had it. I decided to attack this issue following professional advice from one of the eminent experts in the NET specialist dietitian world – Tara Whyand.  My regime was now based on science (although it isn’t really an exact type!), that is checking the ‘at risk’  nutrient levels were OK (particularly ADEK and B12), taking supplements where necessary to help with deficiencies, and tackling things such as malabsorption and diet.

The patient has a big part to play in any improvement strategy, so in 2013/14 I experimented more and completely changed my breakfast and lunch regime to oatmeal/porridge and toast which made a significant difference. I started to avoid eating large meals and I reduced fat consumption generally. I started taking probiotics to counter the effect of any bacterial imbalance as a result of my surgery (i.e. to combat SIBO).  To keep track of everything, I set up and maintained a detailed diary to help identify things making it worse, tinkering as I went along. For those who are contemplating this sort of strategy, let me tell you – it takes time, effort and patience!

I seemed to make excellent progress with ‘frequency’, which is down to once or twice per day – i.e. I felt like a normal bloke 🙂 Quality was not consistently good but I’m of the opinion, this may be something I need to live with. Stomach cramps are reduced, as is gas and bloating reduced (I’m fairly confident that is mainly down to probiotics). Happy days, my strategy has worked.  I reduced my average daily ‘visits’ by 400% without any medicine. 

However …. (have you noticed, there’s always a ‘however’ with NET cancer?).

Although I’m generally well, I did start to think in 2016 that the balance was not quite right. My ‘visits’ were starting to last longer due to a consistent feeling of incomplete emptying – i.e. movement is OK but is followed by what seems like constipation. Additionally, I’ve had several episodes of constipation and pain with no ‘movement’ for 24-36 hours. This happened in May, September and December 2016.  Had 3 more episodes in 2017 and 2 so far in 2018.  My diary now has numerous ‘zero’ entries in the daily bowel movements column, something I never thought I would see again in my lifetime!

When you’ve had small intestinal surgery, as many midgut NET patients have, this sort of thing can be extremely worrying. A bowel obstruction can be dangerous and I’d like to avoid additional surgery at this stage. The second occurrence was particularly severe and the pain lasted for 1-2 weeks. Fortunately, the issues eventually settled and appear to have been a result of a sluggish system, although my regular scans check to see if any issues in that area might have been contributing. (Note – lactulose (oral) is awful, will never touch it again!). I seem to remember a few years ago thinking constipation would be a luxury.  I can assure you it isn’t – things need to keep moving, the opposite is much worse!

So … am I a victim of my own dietary regime success? Possibly.  The GP who assessed my constipation and pain in September 2016 told me to stop taking a Calcium supplement which was prescribed by the same practice at the beginning of that year – Calcium can slow your system down apparently (…..the calcium is a long story but it was a counter to an osteoporosis risk that I have due to long-term use of blood thinners).  I already get enough calcium (and vitamin D) through the normal channels plus supplements, so it was a low risk action. I tinkered with my diet again, reducing my fibre intake and then built up again slowly. Additionally, I could probably do with more water!  Perhaps my Lanreotide is having some effect too? In 2018, I changed my bread to one with less fibre as a test, nothing to report so far.

Is it just me with constipation issues? No….. I carried out some covert searches on forums and found this issue has been mentioned numerous times.

I suspect we need science and some specialist NET research in this area, not sure the over the counter prescription is the optimum solution.  I was therefore delighted to see a patient survey produced by NET Patient Foundation in conjunction with the Royal Free Hospital presented right in front of me in Barcelona at ENETS 2018.  In this survey (which I remember completing), they found that the most self reported side effect of somatostatin analogues was in actual fact constipation (shock horror!).

Tara poster
The poster as presented at ENETS 2018 – featuring Tara Whyand

As you can see from the picture, the survey results came along with some pertinent advice which you will already find in some of my articles co-authored by Tara Whyand who was involved in the survey results analysis.  Interestingly, Tara commented on the constipation figure pointing out that the constipated feeling may in fact be confused with ‘incomplete emptying’ as I indicated I was experiencing above.  I think she’s right.

self reported survey
Abstract posted at ENETS 2018

I’m always skeptical about patient surveys as they tend to be gathered from a very small percentage of the actual patient population and tend to be sourced from those with the worst issues (something I call ‘situating the appreciation’).  There’s a little skepticism in me about this particular survey, mainly because the results were not scientifically investigated i.e. were these self-reported side effects actually caused by somatostatin analogues or something else?

However, many of the things reported in this patient survey are issues that I know patients tend to talk about anecdotally in patient forums. Some of them are already listed on patient information leaflets (often without patients knowing I might add) so this is further confirmation of the official trial results.  Wide variances or new unlisted issues probably need looking at though.

Despite some of these side effects being listed, I believe doctors need to provide more support for patients who experience these issues.  So, even if constipation (or incomplete emptying) is not totally caused by somatostatin analogues, at least this survey should start up a dialogue.

p.s. I recently started taking Pancreatic Enzyme Replacement Therapy to combat some of the well known side effects of somatostatin analogues but not yet evaluated their overall impact with the above story.  Read about this and a Q & A session with Tara Whyand in this article – click here

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!

Neuroendocrine Cancer – the diarrhea jigsaw

NETCancer Diarrhea Jigsaw

Diarrhea can be a symptom of many conditions but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, PPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma.

Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load.

There are other reasons that might be causing or contributing, including (but not limited to) endocrine problems such as hyperthryoidism, mastocytosis or Addison’s disease (which may be secondary illnesses in those with NETs).  It’s also possible that ‘non-sydromic’ issues such as stress and diet are contributing. It could be caused by other things such as Irritable Bowel Syndrome (IBS). Yes, believe it or not, NET Patients can get normal diarrhea causing diseases too!

Define Diarrhea

I want to give a general definition of diarrhea as there are many variants out there. In general, they all tend to agree that diarrhea is having more frequent, loose and watery stools. Three or more stools per day seems to be the generally accepted threshold, although some sites don’t put a figure on it.  It’s not pleasant and just about everyone on the planet will suffer it at some point in their life, perhaps with repeated episodes. Normally it’s related to some kind of bug, or something you’ve eaten and will only last a few days before it settles (acute diarrhea). Diarrhea lasting more than a couple of weeks is considered chronic and some people will require medical care to treat it.  It can also be caused by anxiety, a food allergy/intolerance or as a side effect of medicine. Pharmacists and GPs will be seeing many patients with this common ailment every single day of business.

Diarrhea induced by a Syndrome

When you consider the explanation above, it’s not really surprising that diarrhea related symptoms can delay a diagnosis of Neuroendocrine Cancer (and most likely other cancers too, e.g. pancreatic cancer, bowel cancer). For example, diarrhea is the second most common symptom of Carcinoid Syndrome (Flushing is actually the most common) and is caused mainly by the oversecretion of the hormone Serotonin from the tumours. Please note diarrhea in other types of syndromes or NETs may be caused by other hormones, for example it may also be caused by excess calcitonin in the case of Medullary Thyroid Carcinoma or VIP in the case of a functional pNET known as VIPoma. I’ve heard stories of people being told they have IBS or something similar for years before they received what is now a late diagnosis and at an advanced cancer stage. This is only one of the reasons why NETs is not an easy condition to diagnose, although it is possible that some people actually had IBS and it was masking the NET. Even after treatment to remove or reduce tumours, many people will remain syndromic and need assistance and treatment to combat diarrhea induced by a NET syndrome (see below).

Diarrhea as a Consequence (Side effect) of Neuroendocrine Cancer Treatment

All cancer treatments can have consequences and Neuroendocrine Cancer is definitely no exception here. For example, if they chop out several feet of small intestine, a chunk of your large intestine, chunks (or all) of your stomach or your pancreas, your gallbladder and bits of your liver, this is going to have an effect on the efficiency of your ‘waste disposal system’. One effect is that it will now work faster! Another is that the less effective ‘plumbing’ may not be as efficient as it was before.  There are also knock-on effects which may create additional issues with the digestive system including but not limited to; Malabsorption and SIBO.  I recommend you read my posts on Malabsorption and SIBO.

Surgery can often be the root cause of diarrhea.  A shorter gut for example, means shorter transit times presenting as increased frequency of bowel movements.  Another example is the lack of terminal ileum can induce Bile Acids Malabsorption (BAM) (sometimes known as Bile Salts Malabsorption) in degrees of severity based on size of resection. Lack of a gallbladder (common with NETs) can also complicate.  Bile Acids are produced in the liver and have major roles in the absorption of lipids in the small intestine. Following a terminal ileum resection which includes a right hemicolectomy, there is a risk that excess Bile Acids will leak into the large intestine (colon) via the anastomosis (the new joint between small and large intestines).  This leakage can lead to increased motility, shortening the colonic transit time, and so producing watery diarrhea (or exacerbating an existing condition). Although this condition can be treated using bile acid sequestrants (i.e.  Questran), it can be difficult to pinpoint it as the cause.

Surgery of the pancreas can also produce effects such as exocrine pancreatic insufficiency which can lead to a malabsorption condition known as steatorrhea which may be confused with diarrhea (although some texts call it a type of diarrhea).   It isn’t really diarrhea but it may look like it given the presentation of the faeces and patients may suffer both diarrhea and steatorrhea concurrently.  Patients will recognise it in their stools which may be floating, foul-smelling, greasy (oily) and frothy looking. Treatment options will mainly include the use of Pancreatic Enzyme Replacement Therapy or PERT for short (Creon etc).

Many non-surgical treatments can also cause diarrhea, including but not limited to; somatostatin analogues (see below), chemotherapy, biological targeted therapy (e.g. Everolimus, Sunitinib), radiotherapy.

Somatostatin analogues are an interesting one as they are designed to inhibit secretion of particular hormones and peptides by binding to the receptors found on Neuroendocrine tumour cells. This has the knock-on effect of inhibiting digestive/pancreatic enzymes which are necessary to break down the fat in our foods leading to Malabsorption of important nutrients.  This may worsen the steatorrhea in pancreatic NET patients but also lead to steatorrhea in others with non-pancreatic locations who have been prescribed these drugs.

Clearly, I cannot offer any professional medical advice on coping with diarrhea, I can only discuss my own situation and what I found worked for me. Don’t forget, like many diseases, what works for one, might not work for another. However, I did tackle my problems following the advice of an experienced dietitian who specialises in NET Cancer. That said, I was ‘sleep walking’ for over 2 years thinking my issues were just part of the way things were after my treatment.  I was wrong about that!

Treatment for Syndrome Induced Diarrhea 

Like many other NET patients, I’m on a 28 day injection of somatostatin analogues (in my case Lanreotide).  Both Octreotide and Lanreotide are designed to reduce the effects of NET syndromes and therefore can often make a difference to syndrome induced diarrhea. These drugs also have anti-tumour effect and so even if you are not syndromic or they do not halt or adequately control syndrome induced diarrhea, they are still a valuable contribution to NET treatment.

Some syndromic patients find they still have diarrhea despite somatostatin analogues and they end up having ‘rescue shots’ or pumps for relief (both of these methods tend to be Octreotide based).  (Hopefully they are not getting confused between diarrhea caused by the non-syndrome effects – see above).  Some have more frequent injections of the long acting versions of somatostatin analogues which has the effect of increasing the dosage.  There’s a new drug available for those whose carcinoid syndrome induced diarrhea is not adequately controlled or perhaps they are unable to have somatostatin analogues as a treatment. Telotristat Ethyl works by inhibiting tryptophan hydroxylase (TPH), a chemical reactor involved in the manufacture of serotonin, which is the main cause of syndrome induced diarrhea.  It was approved by the US FDA in February 2017, EU areas in September 2017, and is on the way to being approved elsewhere.  Read about this drug here.

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

Sorting out the symptoms – post diagnosis

I like to describe this as the Neuroendocrine Cancer jigsaw. It’s a really difficult one and sometimes you cannot find a piece, or the pieces won’t fit. However, metaphorically speaking, the missing piece might be a NET specialist presentation, a comment, statement or view from another patient, a link to an article from a reputable source, or even something you do to improve your lot – there might even be trial and error involved. It might even be this blog post!

How do you work out whether diarrhea is caused by a hormone producing tumour or by the side effects of treatments? There’s no easy answer to this as both might be contributing. One crude but logical way is to just accept that if you have normal hormone markers, for example 5HIAA (there could be more for other tumour/syndrome types), and you’re not really  experiencing any of the other classic symptoms, then your syndrome might be under control due to your treatment (e.g. debulking surgery and/or somatostatin analogues, or another drug). My Oncologist labels me as ‘non-syndromic’ – something which I agree with. I’m 99.999999% sure my issues are as a result of the treatment I’ve had and am receiving.

This disease is so individual and there are many factors involved including the type of syndrome/NET, patient comorbidities and secondary illnesses, consequences of the surgery or treatments performed, side effects of drugs – all of which is intermingled with suspicion and coincidence – it’s that jigsaw again!  I always like to look in more detail to understand why certain things might be better than others, I always challenge the ‘status quo’ looking to find a better ‘normal’.  I really do think there are different strategies for syndrome induced diarrhea and that which is a result of treatment or a side effect of treatment.  There’s also different prices, with inhibitors costing thousands, whilst classic anti-diarrhea treatments are just a few pennies.  Adjustments to diets are free!

When I was discharged from hospital after the removal of my small intestinal primary, I was in the toilet A LOT (I was actually in the toilet a lot before I was discharged – check out my primary surgery blogs here) .  My surgeon did say it would take months to get back to ‘normal’ – he was right and it did eventually settle – although my new ‘toilet normal’ was soft and loose and several times daily.  My previously elevated CgA and 5HIAA were eventually back to normal and my flushing had disappeared.  I didn’t have too many issues with diarrhea before diagnosis.  Deduction:  my issues are most likely not syndrome induced.

I read that many people find basic ‘Loperamide’ (Imodium) helps and I tend to agree with that if you are non syndromic and just need that little bit of help.  I decided long time ago I would not become ‘hooked’ and only really take it for two purposes:  1) if I have a bad patch and 2) if I’m going on a long journey (i.e. on a plane perhaps).  I estimate I’ve used 4 packets in as many years.  Loperamide decreases the activity which causes intestinal motility (peristalsis). This has the effect of increasing the time material stays in the intestine therefore allowing more water to be absorbed from the fecal matter.  Ideal for those with a shorter bowel due to surgery and advice from a medical professional is always advisable.  To reduce the risk of malabsorption induced diarrhea and steatorrhoea, both of which can lead to loss of valuable nutrients, the use of Pancreatic Enzyme Replacement Therapy (PERT) might need to be introduced as required by your NET specialist.

Have a look at Enterade – the results from trials look good.

enterade

As for my own strategy, I filtered out the advice from a NET specialist dietitian and have managed to make quite a difference to my Quality of Life (QoL) without resorting to really expensive drugs (which come with their own side effects).  Here’s things that helped me:

  • made some changes to diet (they were not huge changes),
  • included supplementation where necessary,
  • reduced stress as far as is practical to do,
  • exercise,
  • maintained a diary to help with monitoring progress or setbacks,
  • hydration is also important (….still working on that one).
  • started taking PERT (Creon) on 23 Dec 2017 (still assessing as at April 2018) but looks reasonably positive so far.

With no fancy and expensive drugs, I’ve gone from 6-8 visits to 1-2 visits (as a daily average, it’s actually 1.6).  This didn’t happen overnight though, it took a lot of time and patience.  All of this doesn’t mean to say I don’t have issues from time to time …… because I do!


In summary, I think it’s important that people be sure what is actually causing their diarrhea after diagnosis so that the right advice and the optimum treatment can be given.

Listen to Dr Wolin talking about this particular jigsaw puzzle – click here

Also see a nice article that come out of NANETS 2017 – click here

Of course, some people sometimes have the opposite effect but that’s in another blog here – Constipation

You may be interested in this development

Toilet cards are available from NET Patient Foundation – email hello@netpatientfoundation.org

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

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

Neuroendocrine Cancer Nutrition Series Part 4 – Food for Thought?

Food for thought

Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer.  In the previous parts of this series I focussed on the following:

Article 1 – Vitamin and Mineral Challenges.   This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietician.  This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario.

Article 2 – Malabsorption.  Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.

Article 3 – ‘Gut Health’.  This followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as a consequence of cancer treatment. Also discusses probiotics.  Input from Tara Whyand.

Article 5 – ‘Pancreatic Enzyme Replacement Therapy’. The role of PERT (Creon etc) in helping NET Patients. Input from Tara Whyand.

I said in Article 1 that my intention is not to tell you what to eat, even though that might be a challenge for many and this theme continues. The issue with Nutrition and Diet in general, is that it’s very individual and what works for one may not work for another. Rather I’d like to focus in on why such things might have an effect – patients can then experiment and see what works for them. NET patients may have multiple problems and issues (including the effects of eating) which people may be relating to their cancer or the effects of a particular syndrome or treatment (working that out can be difficult!).  Even if I link you to an authoritative site, it will most likely only show GENERAL GUIDELINES, since patients with NET Cancer should really be assessed on a case-by-case basis.  However, I can say that from personal experience, these guidelines are a good base to start in understanding the issue.  You should always seek professional advice from a reliable ‘NETs aware’ nutritionist that can help you determine what your nutritional needs are and also can guide you in the right direction regarding food and supplement intakes.  Be wary of the internet on diet and nutrition, there is much ‘quackery’ out there and normally they want to sell something regardless of whether it’s good for you or not.  Fake healthcare news is big business unfortunately.  You may also enjoy article 2 and article 3 of this series in internet dangers.

In this article, I want to cover the ‘knotty’ problem of what is in food that might be provoking a reaction and why.  The other thing I would emphasise is that the cause of ‘provocation’ might not just be from what you have eaten, but how much. Moreover, whether the cause is syndromic, due to treatment; or from a comorbidity. For example, if you’ve had classic small intestinal NET surgery, you’re likely to be missing a few feet of small intestine and at least your ascending colon and all that goes with that (i.e. you’ve had a right hemicolectomy).  It follows that your food might transit quicker than normal on its journey from mouth to toilet.  There are no doubt other issues which might cause you to ‘move quickly’ and most of these issues will have been covered in Series Articles 1, 2 and 3.  For those with Carcinoid Syndrome, you may also find my blog on the 5 E’s useful.

A high level of serotonin is something people might be looking to avoid due to its relationship with midgut NETs and in particular those with Carcinoid Syndrome. One thing I noticed is that experienced dietitians are not saying you must totally avoid foods associated with serotonin.  I say “associated” because serotonin is not found in foods (another NET myth), it is manufactured from the amines in food.  The only time dieticians would recommend staying totally away from these foods is before and during a 5HIAA urine test (5HIAA is a by-product of serotonin) as this could skew the results. Experienced NET dieticians will also tell you that amines in foods containing the precursor to Serotonin will not affect tumour growth.  

It’s not just a serotonin problem – it is actually a much wider issue with something ‘vasoactive amines’ (or pressor amines).  They are precursors for catecholamines such as adrenaline, which trigger some NETs to secrete vasoactive substances, which cause symptoms or in extreme cases, carcinoid crisis.  Tyramine is the most active of these amines. Other strongly active vasoactive amines found in food include histamine that can cause strong dilation of capillaries, and also cause hypertensive crisis.  Reported reactions from these vasoactive amines are acute hypertension, headache, palpitations, tachycardia, flushing and unconsciousness. As a general rule, Tyramine and other pressor amines are usually only present in aged, fermented, spoiled protein products, but quite often, it’s food containing a precursor amine that is what you are looking for (for example Tryptophan is a precursor to Serotonin).

Personally I cannot think of a single food which causes me to have a ‘reaction’ other than if I eat too much or eat something with a high fat content.  Basically for someone who has had abdominal surgery, the system cannot cope for one reason or more – see Series Article 2.   It’s important to distinguish this type of reaction which is actually something caused by the consequences of cancer treatment rather than one of the ‘syndrome’ effects .  The answer might simply be to reduce or adjust food intake rather than cut foods out, particularly foods that you may need for nutrition and energy.  And of course, foods you enjoy which don’t cause issues, are related to quality of life.

What I do know from masses of experimentation and running a diary, is that large meals can give me issues. However, as hinted above, I put that down to surgery – NOT syndrome.  I also reduced consumption of fatty foods but that was mainly to combat malabsorption caused by my surgery and exacerbated by Somatostatin Analogues. Again NOT syndrome. I reduced alcohol but mainly because I was concerned about my compromised liver after surgery.

So what are the most provocative foods?  This diagram here is extremely handy BUT I must emphasise that the cause of the provocation may not have been caused by the food itself, just what people think and reported (clearly scientific intervention might prove it was caused by something else).  Everyone is different, so some people might not have any reaction to these foods.  As you can see, a large meal is top and I can almost guarantee much of this was caused by people having a shorter bowel due to surgery.

foods provoking
Graphic courtesy of The Carcinoid Cancer Foundation (CCF)

What are the foods containing high levels of these vasoactive amines?  It is here that I refer you to a site which was one of the very first things I read after my diagnosis, and I re-read it after my initial treatment when I discovered that my debulking and cytoreductive surgery came with some consequences.   This is an amazing piece of research put together by the late Monica Warner (wife of Dr Richard Warner) who herself said “It has not been an easy task to put these guidelines together“.  I don’t believe there is another source of such detailed research and guidelines on the Nutritional Concerns for the NET Patient (note the term Carcinoid is used throughout, therefore it tends to be focused on carcinoid syndrome.  Many other NET Syndromes have associated diet and nutrition constraints and problems too.

This is not an exact science and as the author said “I must emphasize at this point that these are only GENERAL GUIDELINES since patients with carcinoid (sic) may have multiple problems and must be assessed on a case-by-case basis.”. So for example eating a big meal comes out top of the survey and does not necessarily mean that is caused by carcinoid syndrome – as I said above, it’s very frequently caused by having a shorter gut, or no gallbladder, and other issues. You can eat a large meal containing very low levels of the offending amines and still run to the bathroom because your waste disposal system can’t cope with the amount – that is not a syndrome problem.  One person’s perceived ‘syndrome’ problem is another person’s cancer treatment ‘side effect’.  Working out which one is not easy but it’s worth the effort to try to understand which one might be causing the problem.

READ THE RESEARCH AND GUIDELINES BY CLICKING HERE

I hope you found my ‘food for thought’ tasty 🙂

Other useful links which have an association to this blog:

{a} Read a Nutrition Booklet co-authored by Tara – CLICK HERE

{b} Follow Tara on Twitter – CLICK HERE

{c} Watch a video of Tara presenting to a group of NET Patients – CLICK HERE

{d} Now Watch Tara answering the Q&A from patients – I enjoyed this – NET patients are very inquisitive! CLICK HERE

[e] There is an excellent video from the NET Research Foundation (what to eat and why) – CLICK HERE

 

You can hear me talk about my diagnosis by clicking here

Thanks for reading

Ronny

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

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

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


The 5 E’s (of Carcinoid Syndrome)

Guidance and Risk Management
Guidance and Risk Management

Since my diagnosis, I seem to have been in a perpetual learning phase!  What not to do, what not to eat, what not to read!  However, a couple of years ago, I came across a list of ‘E’ words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. There are many variations of this list but this is my take!  I suspect some of this also applies to other types of NETs and other NET Syndromes.

On analysis of this list, it struck me that I was aware of the issues and their potential effects and I’m certain there is science to substantiate the content. These E’s are apparently the most common ‘triggers’ for Carcinoid Syndrome.  Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks and I always feel great after.  I had dental treatment without any precautions before I was aware of the risks …….. nothing happened!  Before I was treated, stressful meetings at work would make me flush though!  As for eating – well that’s another couple of blog’s worth!   (see the Diarrhea Jigsaw and Nutrition Blog 4 – Food for Thought)

The 5 Es are, however, very important, as a severe attack of Carcinoid Syndrome symptoms could be debilitating and life-threatening and I’m fairly certain the list was compiled with this in mind.  Some people are more affected by Carcinoid Syndrome and this is not necessarily related to the extent or aggressiveness of their disease.  Some people just react differently.  An extremely severe attack of Carcinoid Syndrome can also be known as a ‘Carcinoid Crisis’ which is very dangerous on the operating table due to the effects of anaesthetics  – thus why many NET Cancer patients may be infused with somatostatin analogues (usually Octreotide) prior to and during surgery or other medical procedures.  There’s a lot of excitement generated around the term ‘Carcinoid Crisis’ but it is generally uncommon.

I’m not saying the 5Es should be ignored but NET Cancer is complex and most things need to be read in the correct context. What works for some may not work for others. There can also be confusion surrounding the source of symptoms, i.e. are they syndrome or something else?  This is why I believe NET Cancer patients need to answer some key questions when considering the risks associated with the 5 E’s:

  • Are you currently syndromic?   If you are, then the 5 ‘E’ list is probably very good advice but interpreting the advice in the correct context remains important.
  • Are your syndrome related biochemistry results normal (e.g. 5HIAA)? Normal readings (in range) tend to mean the syndrome is under control and many people who were diagnosed with a syndrome may actually be non-syndromic following treatment.
  • Have you had treatment or are having treatment likely to produce side effects which might be confused with Carcinoid syndrome? For example, surgery can be the long term cause of diarrhea and other issues. Despite the role of somatostatin analogues, these could also be the root cause of certain reactions.
  • Do you have any other illnesses?  If yes, do these other illnesses produce effects similar to carcinoid syndrome? e.g. asthma, diabetes, rosacea, thyroid disorders, vitamin & mineral deficiencies, malabsorption, gut bacterial imbalance.  Sorting out the symptoms can be a jigsaw with a missing piece sometimes.

The vagaries of this disease will no doubt throw up some exceptions and additions. There will be patients who have no syndrome but have elevated biochemistry and vice versa!  Additionally, there will be patients who have had surgery and/or are being treated with somatostatin analogues but will still be syndromic in varying degrees of severity.

The so-called ‘5 Es’ are as follows:

Epinephrine: This was a new piece of information for me and I only discovered this as a potential problem when I started monitoring some of the USA Facebook forums.  This does not appear to be that well-known in UK. Epinephrine (commonly known as adrenaline) is often used in dentistry mixed with a local anaesthetic. I won’t risk this, so I’ve instructed my Dentist to place a note on my record asking for epinephrine not be used (and clearly I’ll remind them each visit!). According to NET guru Dr Woltering, plain novocaine, carbocaine or plain marcaine are preferred.  You should also check that your anaesthetist for any procedure you may be undergoing is aware of your carcinoid syndrome. However, the danger is not just with dentistry work.  Any anaesthesia is risky.  Check out my post ‘carcinoid crisis’.

For those who have standby ‘Epi Pens’, I did read the following statement on the Carcinoid Cancer Foundation website:  “ …….. one exception is the administration of epinephrine in the case of an allergic anaphylactic reaction (i.e. a bee sting), so it cannot be avoided in this case, just make sure that Octreotide (Sandostatin) is also available“.  This advice is also extremely relevant to Pheochromocytoma and Paraganglioma patients who may be a high risk of intraoperative hypertensive crisis.

Eating: This is very individual.  Certain foods or large meals can be difficult, particularly if you have had any gastrointestinal surgeries. I keep a personal diary trying to identify things that upset my system. I try to find some balance between what I know is good for me and also what I know I enjoy. For example, I found that very large meals do not agree with my ‘new plumbing’. If I eat a lot of sweets, I’ll also suffer …..so I just eat a little – check out my  blog post Chocolate – The NET Effect.

Personally speaking, I’m fairly certain the vast majority of my issues are related to my treatment (past and present) rather than being provoked by Carcinoid Syndrome, i.e. if I rush to the toilet after a meal, it’s not syndrome, it’s a reaction of my compromised digestive system. So with this in mind, I try to reduce those things but additionally strike a balance between quality of life and excessive and rigid adherence to some of the guidance out there (see below) – as I said above, interpretation and context is important. My compromised system cannot deal with big meals so I ‘graze’ most of the day and then eat a small to medium-sized meal in the evening. I’ve been doing this for 3 years and reduced my visits by 300% without any special or expensive medication.

In my blog Nutrition Blog 4 – Food for Thought, I’ve linked to authoritative sources on potential diet triggers.  I’m not suggesting you cut out all of the foods on these lists (you won’t last long!). Some can indulge in those foods and some cannot. For example, chocolate and caffeine (tea/coffee) are on the lists but I eat/drink those frequently (in moderation) and have no problem. It’s a case of testing things out.  I like to describe my eating as ‘The Risk Management of my Quality of Life’. By the way, no-one is suggesting that a NET patient with carcinoid syndrome (and don’t forget this is only one syndrome of many with NETs) should stop eating foods high in the offending amines or are precursors to serotonin (e.g. tryptophan).  They do not make tumours grow (a myth) but just make sure you adhere to the dietary restrictions for any 5HIAA test.

Emotions:  Stressful situations can cause symptoms to flare up. While it is difficult to avoid all stress (work, home, commuting, etc), it is helpful if you can manage or reduce it. Like eating, this is a very individual area. From personal experience, I know stress can exacerbate carcinoid syndrome. Before I started my treatment, I was regularly flushing in meetings at work (….. think boxing matches!). After my treatment, stress was definitely a factor causing increased bowel motility.  I’ve removed a lot of stress from my life and it helps. You may need to be ruthless in managing this aspect of your illness.

Exercise:  Exercise is extremely important for overall health and well-being and I know quite a lot of NET Cancer patients who exercise regularly without issues. It can, however, trigger carcinoid syndrome if you overdo it – it is, however, like eating, a very individual thing. I take the view that ‘zero’ exercise might potentially be an even higher risk. Even a walk around the garden or gardening is exercise. When I was at work, I would walk to see people rather than phone them. Sometimes I walk to town rather than drive, it all adds up! I have evidence from my own exercising regime proving in my case that exercise can reduce the knock-on effects of some of the other E’s (emotions and eating) and/or the side effects of treatment – check out my blog entitled Exercise is Medicine.  Those who are syndromic and/or have other conditions to manage are probably best to take medical advice on how much exercise they need to do.

Ethanol (alcohol, liquor): Many NET patients have difficulty tolerating wine, beer and spirits (hard liquor). I was never a big drinker so for me it was easy to go almost teetotal. I do have the occasional beer but very infrequently and normally on holiday – I personally don’t get any issues with the odd beer but again this is trial and error.  I really enjoy my beer when I celebrate my Cancerversaries. Also check out my blog Alcohol – the NET Effect

Summary

I’m sure there could be a 5 A’s to 5 Z’s list of things to avoid but as I said above, this needs to be balanced with what the actual risks for you are and if you’re like me, quality of life. If you read most Facebook closed group or forums, you will always find at least one person is affected by something which affects no-one else. Please note this article is just my own appreciation of these issues and I emphasise once again that everyone has different experiences. I do, however, think it’s important to consider any secondary illnesses, effects of surgery and biochemistry results (or indeed a combination of one or more of these factors). Everything in life involves some kind of risk management and if you are totally risk averse, then you are unlikely to have much of a life (or a diet!).

It’s not easy but my daily diary helps me assess trends and work out what things upset me more than others – I can then reduce or eliminate. You need to tailor your own advice perhaps with the help of a doctor and/or dietician versed in NET Cancer.  I also have some related posts on the subject of vitamin and mineral deficiencies, malabsorption and probiotics – check them out as the problems associated with these subjects could potentially look like a worsening of carcinoid syndrome and lead to unnecessary worry and unnecessary treatment.

For most, Carcinoid Syndrome can normally be controlled by the use of debulking surgery and/or somatostatin analogues (Octreotide/Lanreotide).  However, there is a new drug called ‘Teloristat Ethyl’ (XERMELO) which looks like it may provide supplementary treatment for patients whose carcinoid syndrome diarrhea is not adequately controlled by somatostatin analogues. It’s an expensive drug and comes with side effects so you need to be sure it’s your syndrome causing the problem before you commit to a prescription.

Thanks for reading

Ronny

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Lanreotide – it’s calling the shots!

Lanreotide calling the shots

When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly ‘somatostatin analogue’ treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed Lanreotide (known in the UK as Somatuline Autogel and elsewhere as Somatuline Depot).  Technically this is a hormone therapy (it’s not chemo).

Somatostatin Analogues (Octreotide/Lanreotide) are mainstay treatments for many Neuroendocrine Cancer patients and their introduction is a very significant factor in the improvement of both prognostic outcomes and quality of life.  Both drugs are designed to control Carcinoid Syndrome (but can be used selectively in other NET syndromes) and both have anti-tumour effects.  Check out my Lanreotide vs Octreotide comparison blog.

butt dart with words

Although I didn’t relish the thought of any injection in the ‘rear end’ every 28 days for the rest of my life, I admit to being slightly relieved with his choice.  I had been reading about patient experiences with the alternative, mainly the needle length and the occasional problems mixing the drug prior to injection.  Although Lanreotide has a similar gauge (thickness), the needle is a good bit shorter and is deep subcutaneous rather than Octreotide LAR’s intramuscular (IM) route. No mixing is required as Lanreotide comes prefilled.

If you’re interested in the science, please be aware that a somatostatin analogue is a synthetic (manufactured) version of a naturally occurring hormone which inhibits the peptides and amines that can be dangerously hypersecreted by certain neuroendocrine tumours.

Following an Octreotide Scan, various areas lit up confirming the output from previous CT scans.  It also confirmed new ‘hotspots’ for further investigation.  This specialist scan confirmed I probably had working receptors to receive something known as a Somatostatin Analogue to help with combatting the effects of Carcinoid Syndrome (please note that not having working receptors does not mean there is no benefit of receiving somatostatin analogues). I was therefore prescribed daily Octreotide (self-injecting) whilst I was waiting for my first major ‘debulking’ surgery, This treatment did eventually lessen the main effect of the carcinoid syndrome, facial flushing.  It wasn’t until after my first surgery that the facial flushing was dramatically reduced.  I commenced Lanreotide on 9 Dec 2010 and I haven’t had a facial flush since. It’s worth adding that my Chromogranin A (CgA) blood test (correlated to tumour mass) did not return to normal until after a liver resection 3 months later.  My 5HIAA urine test results (mainly correlated to serotonin levels) returned to normal prior to liver surgery in Apr 2011 indicating the Lanreotide was doing its job! Somatostatin Analogue side effects are to be expected and most people seem to have different and/or greater or lesser effects than others. The daily Octreotide did not bother me too much other than some discolouring of the stomach at the injection sites (i.e. black and blue!) ….I’m more observant nowadays, so it’s possible I may not have recorded this experience properly.

If you read the UK patient leaflet which comes with each injection, you can see a list of potential side effects as long as your arm.  Neuroendocrine Cancer comes with many signs, syndromes, symptoms and suspicions, so I always advise caution and some analysis when assigning reasons for problems encountered.  For North America, the equivalent instructions can be found here (Somatuline Depot). I don’t know precisely why (……. I do have my suspicions), but I’m always very sceptical about the criteria used to compile the list of side effects for any medicine. In my own mind, I’m fairly certain that people have existing symptoms or new symptoms as a result of coincidental treatment that are erroneously labelled under drugs during trials.

You can also self-inject Lanreotide but I’m not ready for that yet!  If you do self inject, please note it the site is “the upper outer part of your thigh”.  Check out the Ipsen leaflet here.

I think the injection site is very important and getting this wrong will worsen the side effects. For the Healthcare Professional or trained family member administration, the site should be the superior external quadrant but not of the whole ‘butt’, it means of the left or right buttock that is being used on an alternative basis.  If nurses think the whole ‘butt’, they might be tempted to stick it quite close to the ‘intergluteal cleft’ – not advisable!

Although the patient leaflets are very clear on how to administer the drug, once the location is established, I always discuss the following with the Nurse before I receive the ‘dart’:

1.  The injection should have been removed from the fridge at least 30 minutes before treatment. However, please the product can be put back in the fridge in the original packaging for later use, provided it has been stored for no longer than 24 hours at below 40 deg C (104 deg F) and the number of ‘temperature excursions’ does not exceed three. If you are taking the drug somewhere to be administered or were waiting on a home visit, this might with scheduling issues.

2.  Don’t pinch the skin, stretch it.

3.  Put the needle in fast at 90 degrees, inject the drug slow – 20 seconds is recommended. As the drug is viscous, in any case, there is normally some resistance to a fast release.

4. Do not rub or massage the area after as this action can interfere with the formulation of the drug.  This is clearly stated on the drug information leaflet.

My experience with side effects.  People have different experiences with side effects and just because a particular side effect is mentioned, does not mean to say that everyone will be troubled – many patients experience little or none.  For me, over 7 years, I think I can attribute the following to Lanreotide:

  • itching but only on the legs below the knees centred on the ankles – and nearly always the right leg.  Occasionally, the injection site will itch but only for a day or two.  I have a tub of emollient cream (almond oil) on standby which seems to calm it down.  Note …… a little bit of me thinks there could be a connection with vitamin/mineral deficiency and perhaps a coincidental occurrence and this problem seems much less of an issue over 7 years later. EDIT- could have been Hypothyroidism – click here.
  • minor pain at the injection site but this only lasts for an hour or two and I believe this to be associated with the administration of the injection, i.e. if the injection is done properly, I don’t really have this problem except for a second or two as it enters.  Once, I had pain for 10 days.  In my own experience, the best and least painful injections are those done by trained personnel who are confident.
  • small lumps form at the injection site which is alternating superior external quadrant of the each buttock. You may occasionally hear these being called ‘granulomas‘ or ‘injection site granulomas’. The issue of ‘injection site granulomas’ seems to figure in both Lanreotide and Octreotide. Gluteal injection site granulomas are a very common finding on CT and plain radiographs. They occur as a result of subcutaneous (i.e. intra-lipomatous) rather than intramuscular injection of drugs, which cause localised fat necrosis, scar formation and dystrophic calcification. But no-one seems to know why they occur with somatostatin analogues. I find that they are more conspicuous if the injection is done slightly too high which was my initial experience and they took months to fade.  I opted to stand up for the first two injections and I attribute this decision for a slightly too high injection site.  I now lie down which is actually recommended for the smaller and thinner patient. Although the lumps have reduced in size, I have not seen a new lump for some time indicating location might have been the cause. They sometimes show up on scans.  This is not a new problem and has been highlighted for the last 10 years in academic papers.  This particular paper is useful and the conclusion confirms this is not something that should worry patients too much. Read more here
  • fatigue normally within 24-48 hours of the injection but this is not consistent. Not even sure it can be classed as proper fatigue but it’s a ‘you need to sit down and fall asleep‘ feeling! When this occurs, it normally only lasts for 1 day before the normal energy levels return.  Again, like the itching, this appears to be less of an issue today.
  • malabsorption. although the side effects of gastro-intestinal (GI) surgery and gallbladder removal can cause malabsorption issues leading to steatorrhea (basically the inability to digest fat properly); somatostatin analogues can cause or exacerbate existing steatorrhea, as they inhibit the production of digestive/pancreatic enzymes which aid fat digestion.  Most months, I notice a marked but short-term increase in this problem normally within 48-72 hours of the injection.
  • elevated blood glucose.  This is a new issue in 2018 but has been brewing for a year or two. The patient information leaflet for Lanreotide (and for Octreotide) clearly states that this is a potential side effect and also asks those who are already diabetic, to consult their doctor about monitoring doses of diabetic medicine.  I’m working with my doctors to keep my blood glucose down to avoid becoming diabetic.  Please read this article covering the connections between NETs and Diabetes

Watch a useful injection demonstration video here (for administration by a healthcare professional or family member) (click here)

A few years ago, there was some ‘talk’ that somatostatin analogues were also able to stunt or reverse the growth of certain neuroendocrine tumours.  Has this been the case for me?  Possibly.  I’ve had regular CT scans every 3-6 months and since two bouts of major surgery in 2010/2011, I’ve also had 3 x Octreoscans over the same period.  I did once spend a day analysing 5 years of scan results looking for variations in size and concluded that there was a stable trend and potentially a fading of one or two of my largest liver tumours. I was reminded these two types of scans were not really precise enough to detect small millimetre increases or decreases and as there were other factors at play, there was little commitment to make this declaration.  However, I did note in the summary of the CLARINET study, Lanreotide was associated with prolonged progression-free survival among patients with advanced, grade 1 or 2 (Ki-67 <10%) enteropancreatic, somatostatin receptor–positive neuroendocrine tumours with prior stable disease, irrespective of the hepatic tumour volume.  In terms of its anti-proliferative effects, an interim report from the CLARINET extension study suggested longer-term Lanreotide treatment is well tolerated with ‘anti-tumour’ effects in patients with progressive disease.  The final CLARINET open label extension study report additionally provided evidence for long-term PFS benefits of Lanreotide Autogel 120 mg in patients with indolent pancreatic and intestinal NETs.

There’s currently a trial ongoing in relation to Lanreotide and Lung NETs – read by clicking here.

I have my ups and downs and I do feel quite well most of the time.  Most people tell me I look quite well too – lucky they can’t see my insides!  Over the last 7 years, I’ve made some fairly significant adjustments to cope with my condition and maintain a reasonable quality of life – my monthly injection of Lanreotide is no doubt playing a big part.

Finally, please spend 5 minutes watching this fascinating video from Ipsen.  It explains in easy terms how Lanreotide works.  It also has a useful summary of the side effects at the end.  Click here to watch the video.

I’ve just been enrolled onto a new service called HomeZone whereby the injection is now administered at my home via an Ipsen provided and funded nurse.  Read here to see if you can also take advantage of this service.

THE SOMATULINE ‘RESERVOIR’ FORMING IN THE DEEP SUBCUTANEOUS TISSUE

In July 2018, I received my 100th injection of Somatuline Autogel (Lanreotide).  I was very grateful to still be here so I thought it was worth a celebratory cake – injection themed!

Cake with Needle

CAKE PHOTO1 WITH NURSE2

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Ronny

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Neuroendocrine Cancer – a difficult jigsaw

Book of NETS
A book listing all the possible symptoms of NETs

A couple of years ago, I received a request from a reader asking if I would write an article about all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn’t associated with NETs.

Although I chuckled and raised eyebrows at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task.  I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities. After it started to look like it might be bigger than the Empire State Building, I came to the conclusion that it’s an almost impossible task for a wee Scottish guy with less common disease 🙂  I also started to suspect that even the world’s top NET experts had not accomplished it either.

I have, however, dabbled in attempts to work out my own problems over the past few years. NETs can present with a ‘syndrome’ – a bunch of symptoms normally caused by excessive hormone secretion, some of which are particularly vague and can sometimes continue to cause issues after treatment and beyond. They can also cause non-syndromic issues pertaining to treatment side effects and it must also be noted that even NET patients get regular illnesses.

In my blog article “Neuroendocrine Cancer Syndromes – early signs of a late diagnosis”, I focused on the key symptoms experienced pre-diagnosis and then discussed how you might go about sorting out the symptoms from main side effects post treatment (another regular conundrum for most).  On a similar subject, you might want to check out my 5 E’s blog. I also compiled an article about the source of flushing and diarrhea given there were many differential diagnoses and not just syndromes.

Adding to the issues with cancer and side effects, common comorbidities (many of an endocrine nature) can arise simultaneously and many patients are also (coincidentally) at an age where the body naturally starts to go faulty. All of these factors can make it really difficult to determine the source of the symptoms.  I’m always conscious that the majority of NET patients are in their 5th decade onward and at an age where things start to go wrong.

Here’s another classic example of this problem, I can see many people on forums also have diabetes (an endocrine disease). In the United States alone, nearly 7 million people have undiagnosed diabetes, according to the American Diabetes Association.  I can also see from the news in UK, that this is becoming a much bigger deal too – a report published in Feb 2018 claims that diagnoses have doubled in 20 years.  I’ve used the diabetes link as an example, there will be many other factors at play, e.g. hypothyroidism.  It is certainly possible that many of the problems people face might just be an as yet undiagnosed condition unconnected with NETs. To quote the great Dr Eric Liu, “even NET Patients get regular illnesses”.

In fact, on forums where most people have a diagnosis and are undergoing treatment, there is regular discussion and Q&As about the source of symptoms, i.e. are they a result of a functioning syndrome (i.e. a consequence of the cancer) or something else?  For example, some people complain they still have (so-called) carcinoid syndrome diarrhea after bowel surgery………that needs some careful thought and understanding before coming to what might just be the wrong conclusion, particularly if all tumour markers are normal.  I have lost count of the number of times someone has asked about a symptom on a forum and got 50 different answers. One of the reasons why forums can be good at frightening rather than frighteningly good.  Personally, I never compare myself to strangers on the internet. I just hope most people are using the forums as ‘sounding boards’ and are simultaneously addressing these very complex issues with their doctors when they are genuinely concerned.

I really feel for anyone who is going through a difficult diagnosis or has been diagnosed and then continues to have numerous problems after initial treatment.  I also have a little bit of sympathy for primary care medical staff on the basis this is just one of over 200 types of cancer, many of which have wide age groupings adding to the complexity and difficulty. Moreover, many of the symptoms experienced by NET Cancer patients on analysis look very similar to everyday illnesses and other ailments. And if that wasn’t demanding enough for doctors, many patients present with already established and diagnosed comorbidities (other illnesses) which add another level of complexity. These difficulties can then continue throughout treatment. It can be a real challenge and I’m sure even Doctors can be flummoxed on occasion by patient presentations.

It is extremely difficult to “sort out the symptoms” when faced with multiple locations/tumour sub-types, multiple treatments causing multiple side effects, multiple side effects causing multiple symptoms, multiple comorbidities with symptoms similar to cancer syndromes and treatment side effects (and vice versa).  This disease can be very individual and what happens to one might not happen to another. Although we hope doctors generally take a holistic view when treating NET patients, I have a view that sometimes focussing in on a particular symptom might occasionally be a more effective route (the bottom-up approach – pun not intended!).  When eating an elephant, take one bite at a time!  It’s useful to know about the range of tumor markers and hormone markers – read more here.

NET Cancer Jigsaw

One thing I have learned  ……educate yourself to the best of your abilities.  This will help you to better advocate for yourself.  Improvements are possible.

Neuroendocrine Cancer is a very difficult jigsaw and you sometimes need to look very hard for the missing piece!  The ‘missing piece’ can be variable and very individual, i.e. a NET specialist, access to a particular treatment or even just more support.

Thanks for reading

Ronny

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Neuroendocrine Cancer Nutrition Series – Article 3 – Gut Health

3d render medical illustration of the human digestive system - courtesy of Profbiotics.com
3d render medical illustration of the human digestive system – courtesy of Profbiotics.com

My two most popular posts to date are Nutrition Articles 1 and 2 so I guess this is a topic you guys like?  Lucky for me I’m pushing at an open door as nutritional issues are one of the biggest challenges affecting most Neuroendocrine Cancer patients.  It is also a key factor in maintaining a decent quality of life.

When I first indicated this series was under construction, a few people got quite excited anticipating me to produce advice on what to eat etc.  However, that was never my intention. What people should or should not eat is such a varied problem (or solution?) and there are already several ‘what to or not to eat’ publications/articles out there aimed at NET patients; some more up to date than others (all I would say is to interpret them carefully). Rather I want to look at what causes the nutritional related issues and to a certain extent, try to work out whether these issues are caused by either treatment or an associated syndrome leaving fellow patients to make up their own minds whether this applies to them or not. However, you may find Article 4 Food for Thought useful.

The first two blogs were Article 1 – Vitamin and Mineral Challenges and Article 2 – Malabsorption.  This particular blog is not as ‘clear cut’ or simple as the first two and I suggest you read Articles 1 and 2 first if you are not familiar with these issues.  Again I’m grateful to Tara Whyand (NET Specialist Dietician from Royal Free London) for some of the input below.

When I first met my surgeon, I found his favourite word was ‘Gut’.  Like me before diagnosis, many of you will have heard or used the word but in an intentionally non-medical context, e.g.  guts (bravery), ‘gut feeling’ or ‘gut instinct’ (intuition). I’ll return to that theme later but it’s no surprise why some scientists refer to our gut as a ‘second brain’.

I always thought the gut referred to just the ‘belly’ area but in medical parlance, the gut has a much bigger geography.  It is sometimes used interchangeably with the term Gastrointestinal (GI) Tract and stretches from the throat to the anus and is responsible (in the most general terms) for food intake, digestion/absorption,  waste processing and finally waste ejection.  NET patients should be familiar with the terms ‘foregut’, ‘midgut’ and ‘hindgut’ which are sometimes used to define the embryological origin of Neuroendocrine primary tumours, although the boundaries and constituent parts seem to vary from site to site.

This article is generally about ‘gut health’ but I might stray beyond that at times. However, I must warn you this is an area still under scientific study and investigation. I found a mountain of information out there and it’s all very complex! However, with the help of Tara, I focussed and found a few pieces of information which may be useful to NET Cancer patients.

One of the first pieces of advice I was given after my initial surgery was to take probiotics – to keep up my stocks of ‘good’ bacteria.  I started with the liquid drinks you can buy in most supermarkets and supplemented this by eating bioactive yoghurt.  I didn’t really notice any difference from either but the yoghurt was nice to eat!  Tara Whyand then confirmed this advice when I first met her in 2012 at a NET Patient conference.  In 2013 when I started looking for a new normal, I decided to take a high-grade daily capsule containing 5 billion friendly bacteria.  Within weeks I was noticing a difference in bowel motility although I confess to changing other elements of my lifestyle at the same time (more on that later). Nonetheless, I sense probiotics are helping and I won’t be reducing or stopping them any time soon.  If you look at several NET specific dietician/nutrition presentations, most appear to promote the use of probiotics for NET patients. In addition to Tara, there is a useful NET nutritionist on the NET Research Foundation who recommends probiotics greater than 2 billion to help in tackling diarrhea.  CNETS Canada‘s NET specialist contact also recommends them.

Why might probiotics be important?  One of the terms you find in this complex area is the ‘human gut microbiota’, sometimes known as ‘gut flora’. Our ‘gut’ harbours a complex community of over 100 trillion microbial cells, approx 3% of our body mass!  The human gut microbiota is known to have an influence on every part of our body (including the brain…..) and disruption of this ‘community’ has been linked with several gastrointestinal conditions such as Inflammatory Bowel Disease (IBD) and obesity.

Probiotics can help keep the balance and mix of bacteria stable within the gut which can be affected by many different factors, including antibiotics, aging, illnesses (such as IBD), following infective gastroenteritis and (of interest to NET patients) after cancer treatment or gastrointestinal surgery. {1}  Incidentally, the reference here is authored by Tara Whyand and Professor Martyn Caplin (a Neuroendocrine Tumour expert who also happens to be a Gastroenterologist). Useful reading if you have any of the conditions in the report, had gut surgery or like me you are a total geek 🙂

I’d also like to draw your attention to another interesting area of research into something called Small Intestinal Bacterial Overgrowth (SIBO) which Tara is currently researching. (please note Tara blogs for a commercial organisation so I add this disclaimer – I reference her blogs for their intellectual content rather than any product which is associated with the commercial organisation hosting the blogs. I would also add that her blogs are all evidence based and referenced accordingly)

SIBO is a condition where the small intestine is populated by an abnormal amount and/or types of bacteria. It follows that probiotics may be useful in combatting this.  I found some really interesting statements in one of Tara’s blogs e.g. “……low FODMAP diets are not a long-term solution however as it doesn’t correct the bacterial imbalance and most of the foods to be avoided are healthy. For a longer term solution we need to add bacteria back in – probiotics.{2}.  See also some research on potential issues for people who use Proton Pump Inhibitors (PPI) and take Non-steroidal anti-inflammatory drugs (NSAID’S) including ibuprofen – {3}

So how does SIBO potentially and specifically affect NET patients? It can be caused or exacerbated by abdominal surgery to stomach, duodenum, pancreas or via whipples, small & large intestine, poorly controlled diabetes, the long-term use of omeprazole and lansoprazole (PPIs); and possibly antibiotics.  Symptoms vary for everyone from watery diarrhoea suddenly starting 20 times a day to just bloating and wind in both directions, to nothing at all. Some people also lose weight and there is risk of vitamin and mineral deficiency.

There is a test to check this called the Hydrogen breath test. This test uses lactulose ingestion to measure the hydrogen in the breath. If SIBO is diagnosed, treatment is normally via antibiotics. Interestingly, advice is to leave a 2 hour gap between taking probiotics and antibiotics and a high dose multi-strain probiotic should be applied. There is also an indicative test via blood serum checks. If you have low B12 and high folate (B9), this could also be an indication of SIBO. This should be easy to check as B9 and B12 are normally tested together when either is ordered.  If SIBO is left untreated, bacterial imbalance (dysbiosis) can lead to long-term inflammation and other gastrointestinal problems.

Now all of that is very interesting when you consider some of the day-to-day problems faced by NET patients.  To me, this sounds like another good reason to take regular high strength probiotics, which it would seem, may also be working to resolve an issue which is causing or contributing to diarrhoea. Additionally, good advice on a 2 hour gap between taking antibiotics and probiotics – who knew?

I personally take a 5 billion dosage and am happy to recommend the source offline. However, there is evidence out there to suggest as long as it has some or all of the following strains that are widely available, they should provide benefit: Lactobaccilus plantarum, Lactobaccilus acidophilus, Lactobaccilus brevis, Bifidobacterium lactis and Bifidobacterium longum.

I researched beyond Tara’s advice and also found numerous mentions of very familiar looking SIBO symptoms which all look like classic NET Cancer problems and IBS.  You will like this link which I found very interesting – particularly the bit about the prevalence of patients who have had an “abdominal surgery” or an “Ileocaecal valve resection”.  I guess that would include many NET patients?  (this is a big article so just focus on table 1 near the beginning).

This blog could have been 10 x longer!  I didn’t even get to the bit about the relationship between the gut and the brain – perhaps another day?

 

References:

{1} Review of the Evidence for the Use of Probiotics in Gastrointestinal Disorders – CLICK HERE

{2} Gut Bacteria Reach to Our Intake – CLICK HERE

{3} Acid suppressing drugs and bacterial overgrowth – CLICK HERE

Other useful links which have an association to this blog:

{a} Read a Nutrition Booklet co-authored by Tara – CLICK HERE

{b} Follow Tara on Twitter – CLICK HERE

{c} Watch a video of Tara presenting to a group of NET Patients – CLICK HERE

{d} Now Watch Tara answering the Q&A from patients – I enjoyed this – NET patients are very inquisitive! CLICK HERE

Thanks for reading

Ronny

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

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

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

This is the second article in the Neuroendocrine Cancer Nutrition series. In  the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It’s also worth pointing out that malabsorption issues can be caused by other reasons unrelated to NETs. Additionally, malabsorption and nutrient deficiency issues can form part of the presenting symptoms which eventually lead to a diagnosis of Neuroendocrine Cancer; e.g. in my own case, I was initially diagnosed with Iron Deficiency Anemia in association with some weight loss. Even after diagnosis, these issues still need to be carefully monitored as they can manifest as part of the consequences of having cancer and cancer treatment.

Malabsorption will present via several symptoms which may be similar to other issues (i.e. they could masquerade as, or appear to worsen the effect of a NET Syndrome). These symptoms may include (but are not limited to) tiredness/fatigue/lethargy, stomach cramps, diarrhea, steatorrhea (see below), weight loss. Some of these symptoms could be a direct result of nutrient deficiencies caused by the malabsorption.  Some patients (and perhaps physicians?) could mistake these for symptoms of Neuroendocrine disease including certain syndromes, perhaps leading to prescribing expensive and unnecessary drugs when a different (and cheaper) strategy might be better.

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 (they’re also made in saliva glands and the stomach), break down our food into nutrients so that our bodies can absorb them.  If we don’t have enough digestive enzymes, we can’t break down our food—which means even though we’re eating well, we aren’t absorbing all that good nutrition.

What is malabsorption?

The malabsorption associated with Neuroendocrine Cancer is most prevalent with the inability to digest fat properly which can lead to steatorrhea. Patients will recognise this in their stools. They may be floating, foul-smelling and greasy (oily) and frothy looking. Many patients confuse steatorrhea with diarrhea but technically it’s a different issue although both issues may present concurrently. Whilst we all need some fat in our diets (e.g. for energy), if a patient is not absorbing fat, it ends up being wasted in their stools and in addition to the steatorrhea, it can also potentially lead to (unwanted) weight loss and micronutrient deficiencies of the fat-soluble vitamins A, D, E and K. Certain water-soluble vitamins, particularly B3 and B12, are also at risk. Many NET Patients are prescribed a supplement of pancreatic enzymes to combat these issues – see Article 5 in this series – Pancreatic Enzyme Replacement Therapy (PERT).

What causes it with NET Patients?

Structural Changes (i.e. Surgery) 

This can play a very big part in malabsorption issues. For example, if a patient has undergone Pancreatic surgery, this will most likely effect the availability of pancreatic (digestive) enzymes needed to break down food. Many Small Intestine NET (SI NET) patients will suffer due to the removal of sections of their ileum, an area where absorption of water-soluble vitamins and other nutrients take place. In fact, the terminal ileum is really the only place where B12 is efficiently absorbed.  Low B12 is known to cause fatigue.  Some patients with Gastric tumours succumb to pernicious anemia with the most common cause being the loss of stomach cells that make intrinsic factor. Intrinsic factor helps the body absorb vitamin B12 in the intestine. Although a less common tumour location, jejunum surgery could result in loss of nutrients as this section of the small intestine is active in digestive processes. Malabsorption issues for SI NETs are an added complication to the issues caused by a shorter bowel (e.g. increased transit times), something which is regularly assumed to be the effects of one of the NET Syndromes (particularly diarrhea and fatigue), when in actual fact, it’s a simple consequence of cancer treatment and may need a different treatment regime.

Evidence of the problems being caused by the effects of small intestinal surgery can be found in a recently published Swedish study which you can read here: Click here. This particular study recommends supplementation of B12 and D3 for those affected.  If you’re having trouble getting your physician to monitor your vitamin levels, show them these studies. I get these vitamins checked annually.

The Gallbladder and Liver

The Gallbladder plays an important part in the digestive system – particularly in fat breakdown. The liver continually manufactures bile, which travels to the gallbladder where it is stored and concentrated. Bile helps to digest fat and the gallbladder automatically secretes a lot of bile into the small intestine after a fatty meal. However, when the gallbladder is removed, the storage of bile is no longer possible and to a certain extent, neither is the ‘on demand automation’. This results in the bile being constantly delivered/trickled into the small intestine making the digestion of fat less efficient. One of the key side effects of Somatostatin Analogues  (Octreotide and Lanreotide) is the formation of gall stones and many Neuroendocrine Cancer patients have their gallbladder removed to offset the risk of succumbing to these issues downstream. However, the removal of the gallbladder increases the risk of Bile Acid Malabsorption (BAM) as described below. Any issues with Bile Ducts can also have a similar effect.

The Liver has multiple functions including the production of bile as stated above. However, one of its key functions within the digestive system is to process the nutrients absorbed from the small intestine.  If this process is affected by disease, it can potentially worsen the issues outlined above.

Bile Acids Malabsorption

Another risk created by the lack of terminal ileum is Bile Acids Malabsorption (BAM) (sometimes known as Bile Salts Malabsorption and some texts described the resultant diarrhea as ‘Bile Acid Diarrhea”). Bile Acids are produced in the liver and have major roles in the absorption of lipids in the small intestine. Following a terminal ileum resection which includes a right hemicolectomy, there is a risk that excess Bile Acids will leak into the large intestine (colon) via the anastomosis (the new joint between small and large intestines).  This leakage can lead to increased motility, shortening the colonic transit time, and so producing watery diarrhea (or exacerbating an existing condition).

Somatostatin Analogues

Somatostatin Analogues can also impact (or worsen) the ability to digest fat as they inhibit the production of pancreatic digestive enzymes (amongst other things). This is a well-known side effect of both Octreotide and Lanreotide. The levels of the fat-soluble vitamins (ADEK) and B vitamins such as B12, need to be monitored through testing and/or in reaction to symptoms of malabsorption.  If necessary these issues need to be offset with the use of supplements as directed by your dietician or doctor. Supplements are less affected by malabsorption of nutrients but their efficiency can be impacted by fast gut transit times (thus why testing is important).  The evidence and recommendations for malabsorption caused by somatostatin analogues is here: Click Here.  

Overlapping Areas

Deficiencies of these vitamins and certain minerals can lead to other conditions/comorbidities, some more serious than others. For a list of the vitamins and minerals most at risk for Neuroendocrine Cancer patients, have a read of my article which was co-authored by Tara Whyand – Vitamin and Mineral deficiency risks.

There is a third article in this series discussing a related issue with Neuroendocrine Cancer, particularly where gut surgery has been performed. You can link directly to this article here  – “Gut Health” – (Gut Health, Probiotics and Small Intestinal Bacterial Overgrowth (SIBO)).

The fourth article  looks at Amines and why they can cause food reactions or exacerbate syndromes.

Many people also confuse steatorrhea with diarrhea (although these issues can appear simultaneously), again leading to wrong conclusions about the causes and effects, and worryingly, the treatment required. Check out my diarrhea article – click here.

Article 5 in this series looks at how to combat malabsorption caused by pancreatic insufficiency – Pancreatic Enzyme Replacement Therapy (PERT).

My article ‘The Diarrhea Jigsaw’ is complementary to this nutrition series.

Summary

A common problem in patients and from what I see, many just assume this is part of their various syndromes leading to the wrong therapy or no therapy as it’s simply ignored. Again, I remain very grateful to Tara Whyand for some assistance.

This is a big and complex subject and I only intended to cover the basics.  Everyone is different and nothing in here should be accepted as medical advice for you or anyone you know.  If you need professional advice, you should speak to your doctor or registered dietitian.

Thanks for reading

Ronny

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

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

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Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Vitamins & minerals
Vitamins & minerals – the biggest QoL challenge for NET Patients?

Despite learning early on in my journey that nutrition was going to be a challenge, I sensed the initial focus of my treatment was on getting rid of as much tumour bulk as possible and then controlling (stabilising) the disease through monitoring and surveillance. Clearly I’m happy about that! However, it eventually became clear that the impact of this constant treatment/controlling, meant that some of the less obvious signs of nutrient deficiency were potentially being missed.

This is one of the key reasons I believe there is a gap in specialist follow on support for Neuroendocrine Cancer patients – at least in the UK. As I said in blog post ‘I may be stable but I still need support’, Neuroendocrine Cancer patients need specialist dietary and nutritional advice covering a much wider spectrum than most cancer patients. In this blog, I also suggested that there does not appear to be enough research into these issues leaving many patients working out their own strategies post diagnosis and treatment.  However, I was delighted to see a study published in 2016 indicating a recognition of this problem.  The paper (click here), which was sponsored by ENETS Centres of Excellence (CoE) in UK, concluded that “Given the frequency of patients identified at malnutrition risk using MUST (malnutrition universal screening tool) in our relatively large and diverse GEP-NET cohort and the clinical implications of detecting malnutrition early, we recommend routine use of malnutrition screening in all patients with GEP-NET, and particularly in patients who are treated with long-acting somatostatin analogues”.  This amplifies the advice Tara has given many NET Patients in UK that regular blood checks of key vitamins at risk, particularly B12 and the fat-soluble ADEK (see more on this below).  Even those patients with very healthy diets can still succumb to these issues. Looking at the vast number of forum posts on this subject, perhaps this is also a problem outside of UK?

This is not just about what foods to avoid or eat in moderation, this is also about:

a. receipt of post surgical/treatment advice,

b. early knowledge and countermeasures for the side effects of ongoing and long-term treatment,

c. the intelligent use of supplements where they are applicable,

d. how to combat, treat or offset malabsorption and nutrient deficiencies caused by the complexities of their cancer and any treatment given.  Check out Blog 2 in this series which specfically looks at Malabsorption.  

e. how to deconflict these side effects with those of the various syndromes which can sometimes accompany Neuroendocrine Cancer.

In early 2011, shortly after my first major surgery and commencement of my monthly somatostatin analogue – Lanreotide (Somatuline), I started to notice a number of issues developing. I carefully searched for clues and I could see that some of my issues pointed to side effects from treatment (both from surgery and somatostatin analogues) and potentially some vitamin and mineral deficiencies. I had already been taking an ‘over 50‘ multivitamin tablet for some time before I was diagnosed and assumed I was already covered. Having analysed the issues I was experiencing at the time, I was specifically targeting B12 and my initial test score was just in range (i.e borderline). Surprisingly my multivitamin B12 content was 400% RDA – yet my blood test was borderline. That might explain the fatigue!

I later attended a fantastic patient day where I was introduced to the UK’s solitary Neuroendocrine Cancer specialist dietician. This subject was a revelation for me and I was alerted to the possibility that other vitamins and minerals could be at risk due to a combination of surgery and/or treatment, in particular the fat soluble vitamins A, D, E, K. Following a hastily arranged series of blood tests, I found my Vitamin D was insufficient and this has now been resolved through additional supplementation and more effort to absorb it through conventional means (i.e. the sun!).

I’m now on top of this issue through learning, understanding and basically becoming my own advocate. Please note this is a massive subject and the amount of information on the internet can be overwhelming.  Additionally, it is not an exact science and not everything will apply to every person.  Personally I would stick to sites where the advice is given by a nutritionist/dietician who is also experienced with Neuroendocrine Cancer.

I’m thankful to Tara Whyand who is an Oncology Dietician specialising in Neuroendocrine Cancer at the Royal Free Hospital.  Her research, advice and raising of these issues at patient meetings has been invaluable. As the only specialist in the UK (that I know of), she gets a lot of queries!  If you’re on twitter, you can follow Tara here:

https://twitter.com/LadyNourish

Even though I’ve had to limit this post to vitamin and mineral issues, it’s still much larger than what I normally produce.  Consequently, I’m planning further blogs on associated and overlapping subjects.

In the meantime, I’m very grateful to Tara for the input below:

——————————————————————————————–

NET Patients are at Risk of Deficiencies

Over the past few years I have become more aware of vitamin and mineral deficiencies in NET patients, and the impact these can have on health and quality of life. When the focus of NET treatment is on eradicating and controlling the disease, the impact on nutrition, apart from obvious weight loss, means less obvious signs of micronutrient deficiency can be missed. Below is a list of nutrients which are those most at risk of becoming low enough to cause problems. It is important that the treatment of these deficiencies is discussed with your NET team so they can prescribe suitable doses.

Minerals

Magnesium

Magnesium blood tests are an unreliable measurement and there is no way of accurately measuring body stores.

Magnesium is a vital mineral required for the function structure of the human body. Prevalence of low blood magnesium levels varies from 7% to 11% in hospital patients and clinical magnesium deficiency is frequently observed in conditions causing steatorrhoea or severe chronic diarrhoea, and the degree of magnesium depletion correlates with the severity of diarrhoea and stool fat content. Signs of deficiency include low energy, fatigue, weakness, PMS, menstrual cramps, hormonal imbalance, insomnia, bone mineral density loss, muscle tension, spasms, cramps, cardiac arrhythmia, headaches, anxiousness, nervousness and irritability. If you think you could be deficient you must ensure you consume enough magnesium (375mg per day).

Zinc

Zinc levels are best measured using a combination of blood serum and urinary excretion levels.

Zinc affects the human body through a large number of channels affecting not only cell division, protein synthesis and growth, but also gene expression and a variety of reproductive and immunologic functions. Zinc deficiency is common in undernourished patients. The absence of sufficient levels of zinc in the human body is associated with a large number of adverse health outcomes, including lower immunity, alopecia, tiredness and impaired wound healing. If you are at risk of deficiency make sure you consume enough zinc (10mg per day). If you are clinically deficient your diet must be supplemented.

Iron

Iron deficiency (hypoferremia) and clinical iron deficiency anaemia is easily measured with a simple blood test.

Iron is essential for the formation of haemoglobin in red blood cells which binds oxygen and transports it around the body. Iron is also an essential component in many enzyme reactions and has an important role in the immune system. In addition, it is required for normal energy metabolism and for the metabolism of drugs and foreign substances that need to be removed from the body. Lower iron levels are common in NET patients and there may be several causes of this. Poor iron intake, dietary iron absorption-regulating factors (e.g., vitamin C and copper) or iron distribution factors (e.g. vitamin A), are believed to be causes. Patients may also lose iron due to blood loss from the bowel in intestinal or rectal NETs or after surgery. It may also be possible that diarrhoea in NETs causes malabsorption of iron in the intestine too. Symptoms include tiredness, paleness, thinning hair, impaired immunity and feeling breathless. If you are at risk of having lower than normal iron levels you must consume enough iron (14mg per day). If you are clinically deficient your diet must be supplemented.

Copper

Diagnosis of copper deficiency is based on low serum levels of copper and ceruloplasmin, although these tests are not always reliable.

Copper is an essential trace mineral that is required for human health. This micronutrient is necessary for the proper growth, development, and maintenance of bone, connective tissue, brain, heart, and many other body organs. Copper is involved in the formation of red blood cells, the absorption and utilization of iron and the synthesis and release of life-sustaining proteins and enzymes. These enzymes in turn produce cellular energy and regulate nerve transmission, blood clotting, and oxygen transport. Copper stimulates the immune system to fight infections, to repair injured tissues, and to promote healing. Copper also has an antioxidant effect against oxidative stress.  Gastrointestinal surgery can lead to malabsorption of copper and other micronutrients. Long term malabsorption of food from the gastrointestinal tract can also lead to copper deficiency which puts many more NET patients at risk.  Symptoms of deficiency include neutropenia, impaired bone calcification, myelopathy, neuropathy, and hypochromic anemia not responsive to iron supplements. If you are at risk of lower than normal levels of copper you must consume enough (1mg per day). If you are clinically deficient your diet must be supplemented.

Selenium

Selenium levels are measured using plasma selenium blood tests.

Selenium is an essential micronutrient in humans and functions in many biochemical pathways. Proposed antioxidant pathways of selenium, include the repair and prevention of oxidative damage, alteration of metabolism of carcinogenic agents, regulation of immune response and repair of DNA damage. It works alongside vitamin E and selenium levels are often low during cancer and in patients on long-term intravenous nutrition.  Symptoms of deficiency include muscle pain and tenderness.  Everyone is required to have 55 µg a day and if you are clinically deficient your diet will need to be supplemented.

Water Soluble Vitamins

B1-Thiamine

Thiamine is not usually tested as diagnosis is based on symptoms and a trial of thiamine supplementation. If a doctor is unsure, they will measure erythrocyte transketolase activity and run a 24-hour urinary thiamine excretion.

Vitamin B1, or thiamine is an essential B vitamin which is required for the breakdown of sugars and amino acids. Absorption of thiamine is greatest in the jejunum and ileum, but it is it is inhibited by alcohol consumption and by folic acid deficiency. The most common cause of deficiency is alcoholism, although states causing malabsorption such as gastrointestinal surgery are also a factor. It may also be possible that diarrhoea causing malabsorption of nutrients from the intestines could put a patient at NET patient at risk of deficiency. Symptoms initially include fatigue, irritability, poor memory, sleep disturbances, anorexia, and abdominal discomfort. When more severe it involves hospitalisation due the effects on the nervous system and heart.

Patients who are at risk of deficiency must consume enough thiamine (1.1mg thiamine per day). Patients who are deficient must have their diet supplemented.

B3-Niacin

Niacin is not usually tested but may be useful to confirm diagnosis using urinary excretion of N 1 -methylnicotinamide (NMN).

Niacin also refers to both nicotinamide and nicotinic acid and is required as part of the way energy is produced by the body.  When carcinoid tumours produce hormones such as serotonin, these patients suffer from carcinoid syndrome. These are symptoms such as flushing, diarrhoea, wheezing and damage to heart valves (carcinoid heart disease). When the tumours make large amounts of serotonin, the amino acid, tryptophan, gets used up. When tryptophan stores are low it cannot be converted into the vitamin niacin, which may then cause deficiency. In a NET study, 28 per cent of patients with gastroenteropancreatic /carcinoid tumours and carcinoid syndrome were niacin deficient. Patients without carcinoid syndrome did not have niacin deficiency.  Niacin deficiency can also be caused by cirrhosis and diarrhea. Niacin deficiency leads to pellagra, the typical symptoms of which are diarrhea, dermatitis and dementia. All patients with carcinoid syndrome must take a nicotinamide containing supplement to treat and prevent this deficiency and it is a good idea to get enough niacin if you are at risk of deficiency for other reasons (approximately 40mg nicotinamide a day). Niacin or niacinamide may cause flushing!

B6-Pyridoxine

Vitamin levels are not usually tested but measurement of serum pyridoxal phosphate is most commonly used.

Vitamin B6 comprises 3 forms: pyridoxine, pyridoxal and pyridoxamine, and has a central role in the metabolism of amino acids. It is involved in the breaking down of glycogen into glucose. In addition, vitamin B6 plays a key role in metabolism of neurotransmitters, such as dopamine and serotonin, and it ensures efficient functioning of the immune system and making of red blood cells. The symptoms of vitamin B6 deficiency are local inflammation of the skin and dysfunction of the nervous system. Some NET patients may be at risk of deficiency due to malabsorption in the intestines and undernutrition.  If you are worried you may have lower levels make sure you consume enough (1.4mg per day). If you are deficient you diet must be supplemented.

B9-Folate

Serum folate reflects folate status unless intake has recently increased or decreased.

Folic acid is the synthetic form of folate. It is used in supplements and for food fortification. Folate functions together with vitamin B12 to form healthy red blood cells. It is also required for normal cell division and the normal structure of the nervous system.  It is possible to become deficient in folate due to malabsorption of nutrients in the intestine through diarrhoea and other malabsorption states such as surgery. If you are worried you may be at risk of deficiency ensure you get enough folate/folic acid (200 µg per day). If you are deficient your diet will need to be supplemented.

B12-Cobalamin

Vitamin B 12 must be measured alongside complete blood count and folate levels.

Cobalamin plays a role in DNA synthesis and regenerates methionine for protein synthesis. Low vitamin B12 levels have been observed in NET patients receiving somatostatin analogues and therefore monitoring of vitamin B12 levels is important during long-term therapy. Vitamin B12 deficiency has also been found to be common in type 1 gastric carcinoid NETs after Antrectomy and/or Gastrectomy. Patients with diseased or surgically removed ileums (end of the small bowel) and those who have bacterial overgrowth in the area are also at risk of Vitamin B12 deficiency. In addition, patients with insufficient pancreatic enzymes are also at risk of vitamin B12 deficiency as they play a key role in the steps before absorption occurs. If you are worried your levels may be low you must consume 2.5µg a day. If you are clinically deficient your diet must be supplemented, usually with regular injections.

Fat Soluble Vitamins

A, D, E and K

Somatostatin Analogues (Octreotide and Lanreotide) based injection treatments for a variety of NETs may cause deficiencies in some vitamins. This is because they may alter absorption of dietary fats which contain vitamins. Enzymes are usually released from the pancreas to break down nutrients such as fat, but pancreatic enzyme release can be reduced when somatostatin analogue medications are given.  When fat is not broken down properly, stools become pale/yellow, loose, greasy, foul-smelling or frothy and floating –‘steatorrhoea’. Your precious vitamins therefore end up in your toilet instead. One study followed 54 patients, who mostly had carcinoid tumours and were on somatostatin analogues for at least 18 months. It found that only one fifth of patients had visible steatorrhoea, but 6% were deficient in vitamin A, 28% deficient in D, 58% in E and 63% in K1. This shows that even if you don’t have visible signs of steatorrhoea, you may still be deficient in one or more vitamin!

A-Retinol

Serum retinol blood tests are the means of measuring vitamin A in the body.

Vitamin A is a fat soluble vitamin absorbed through the small intestine either as retinol or carotene, and then converted to retinyl palmitate which is stored in the liver. Normally the liver contains a 2 year store of vitamin A. Vitamin A deficiency has a wide range of ocular manifestations including conjunctival and corneal xerosis, keratomalacia, retinopathy, visual loss, and nyctalopia, or night blindness, which is the earliest and most common symptom. If you are worried about having low levels make sure you consume enough (800 µg per day). If you are deficient your diet will need to be supplemented.

D 3 –cholecalciferol

Your 25(OH)D levels can be measured with a simple blood test.

Cholecalciferol is a nutrient and hormone. Recent evidence for the non-skeletal effects (those apart from bone mineralisation) of vitamin D, coupled with recognition that vitamin D deficiency is common, has revived interest in this vitamin. Low vitamin D levels are linked to higher rates of several other cancers. Vitamin D is produced by skin exposed to ultraviolet B radiation and obtained from dietary sources, including supplements. Persons commonly at risk for vitamin D deficiency include those with inadequate sun exposure, limited oral intake, or impaired intestinal absorption from the diet (as above). The most recent evidence actually points out that the sun is not to be relied on as a source of vitamin D and oral intake is important. If you are worried you may have low levels you must speak with your doctor to arrange supplementation with or without a test.

E- α-tocopherol

Vitamin E can be tested by looking at the α-tocopherol level or ratio of serum α-tocopherol to serum lipids.

Vitamin E is a powerful antioxidant that can be regenerated by vitamin C after oxidation in the human body. It prevents damage of polyunsaturated fatty acids in cellular membranes. Signs of deficiency include dry skin and neurological symptoms. If you think you may have low levels make sure you consume enough (12mg per day). If you are deficient your diet will have to be supplemented.

K- Phylloquinone

Vitamin K deficiency can be measured by looking at the prothrombin time.

Phylloquinone is required for blood clotting and deficiency results in bleeding. Since this deficiency is common in patients with fat malabsorption due to severe liver disease and somatostatin analogue treatment it is important that you consume enough (75 µg per day). If you are clinically deficient you will need to receive supplementation.

Summary

Of course these are only the nutrients which are at risk of deficiency, there are many other nutrients and botanical extracts which may help patients with NET’s. It is vital that nutrition is considered for every patient with a NET and we hope one day each NET unit will have NET Specialist Dietitian to make this possible.

It is vital that nutrition is considered


Links to the other nutrition blogs:

Article 2 – Gastrointestinal Malabsorption.  Overlapping slightly into Article 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.

Article 3 – Gut Health.  This followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as a consequence of cancer treatment. Also discussed probiotics.  Input from Tara Whyand.

Article 4 – Food for Thought.  This is a blog about why certain types of foods or particular foodstuffs can cause issues.

Article 5 – ‘Pancreatic Enzyme Replacement Therapy’. The role of PERT (Creon etc) in helping NET Patients.

You may also appreciate these articles where there is overlap:

The Diarrhea Jigsaw – different things can cause diarrhea, it’s not all about syndromes.

The Constipated NET Patient – yes they exist!

Very grateful to Tara for the input.

Other useful links which have an association to this blog:

{a} Read a Nutrition Booklet co-authored by Tara – CLICK HERE

{b} Follow Tara on Twitter – CLICK HERE

{c} Watch a video of Tara presenting to a group of NET Patients – CLICK HERE

{d} Now Watch Tara answering the Q&A from patients – I enjoyed this – NET patients are very inquisitive! CLICK HERE

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!

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I may be stable (..ish) but I still need support and surveillance


cancer-patient-support

With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, ‘Stable‘ is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal.  The surveillance must continue in case of a recurrence.

It’s important to understand that ‘Stable‘ simply means the disease is “under control” with tests and scans showing the cancer hasn’t changed over time.

One of the disadvantages of ‘incurable but treatable‘ is that Quality of Life (QoL) can in many cases be compromised due to the consequences of cancer and /or treatment. However, if specialist treatment, surveillance and support are all in place, things can gradually be adjusted to a new and hopefully tolerable ‘normal’. 

I also believe patient expectations need to be managed although improvements are still possible.  In my own experience, however, this does not happen overnight. Patients must be willing to accept a new normal or status quo on the basis that things are never likely to be the same again. Many patients with chronic conditions will have minor irritants and Neuroendocrine Cancer patients are no exception in this regard. 

HOWEVER …….. The specialist view of ‘stable’ will be looking at tumour and hormone makers.  The patient is likely to have a much wider view of ‘stable’ and it will include ‘quality of life’ markers. 

So ….what is stable for me?

Looking at my medical documents, I was not really considered ‘stable’ by specialists until 2 years after diagnosis. The measure of that is in scans and markers.  Nothing has grown since 2012 although I have a thyroid lesion being tracked on watch and wait.  My key NET markers have been solidly in range since 2012.  Today, my on-going monthly treatments are well organised, I’m in touch with my specialists and undergo several surveillance checks beforehand every 6 months currently. I get regular/normal illnesses and those are logged in my diary to look for any clues or associations with anything else. In between consultations, I can call in for urgent help if need be. Irregularities of concern to my ‘stability’ are checked, referred to other specialists if necessary and treated.  I feel well, I look well (but you should see my insides ….). I think I’m on top of things.

I think the UK (for example) is very well serviced with district NET Centres across the country each with specialists in Neuroendocrine Cancer and most include a dedicated NET Specialist Nurse – some areas are better served than others. In my opinion, NET Nurses can prove invaluable in on-going care scenarios. In fact, I was very pleased to see a NET Nurse attending and taking a greater role in my most recent MDT meetings.  I’m fairly certain other countries have similar setups.  Some countries may not be so fortunate and are struggling to get the right resources – I can see this on one or two ‘corporate’ Facebook and Twitter sites. Specialist NET Nurses are an extremely valuable commodity – they do brilliant work and we probably need more!  The same could be said for NET Specialist Dietitians who are key to providing quality of life improvements. In fact, I was delighted to see this recommendation at ENETS 2018 in Barcelona. 

recommend dietitians
More dietitians for NETs?

OK … I may be stable (ish) but I still need support!

However ……. my stability does NOT mean I’m complacent.  For minor issues, it’s always useful to talk to a medical professional, even on the telephone. I think of my GP (PCP) as a ‘virtual’ member of my Multi-Disciplinary Team (MDT) and I copy them into any important correspondence between myself and my Oncologist.  They are normally copied in coming the other way (if not I make sure they are). This is starting to return dividends. Whilst my GP is positioned to deal with most of my ‘irritants’, I still believe specialist assistance is required for many NET Cancer problems or any problem where there is potentially an overlap or risk of a connection. Being your own advocate is useful in these scenarios.  Patient-doctor communication is vital and I find it best to drive this myself. I’m lucky to have direct ‘as and when’ contact a specialist NET Nurse.  All NET patients should have the same.

The best advocate for you is YOU (or someone very close to you)

Although I still need constant surveillance, being stable allows me to focus on QoL and in particular trying to improve on my ‘normal’.  Whilst we are on that subject, did you hear the one about the constipated NET patient?  This article contains a summary of my attempts to gain a decent quality of life.

Although I read patient forums, I don’t necessarily rely on them a lot for my own issues. On sporadic one-off forum questions (…..and not forgetting that hundreds of symptom questions are related to ‘the gut’), the discussions can end up with many different and confusing answers. Plus there are so many patients who are at varying stages of their disease, use different types of healthcare systems, have had different treatments and have different types of NET, have other issues going on, it can end up as a tangled mess as people try to compare apples with pears.  To help with this issue, I created my own private Facebook group and I try to emphasise these issues through moderation. 

I will not compare myself to strangers on the internet
remember all patients are different

I like to do my own research as I want to be in control of my own QoL.  One of the most troublesome QoL issues for patients is diet and the digestive system generally (i.e. managing the gut). For many NET patients, particularly those who have had surgery and/or persisting syndrome, diet and nutrition is a  huge challenge as it can very often mimic other problems which can present with a wide range of ‘syndrome like’ symptoms such as fatigue, weight issues and even anxiety. More somatostatin analogues and other drugs might just be the wrong response in certain scenarios. I feel there is a huge gap in the follow-up treatment for people who suffer this as a consequence of their cancer. For example, and to the best of my knowledge, there is only a few dedicated and practicing Neuroendocrine specialist dietician in the whole of the UK (…..I’m willing to be corrected here). Some of you might be thinking that any dietician should be able to help? Although you would be correct to a certain extent, I personally do not believe this is the best or optimum solution. There are very specific issues with NET Cancer patients that are bespoke and complex to the point that conventional cancer diet practices may not fully apply. It’s not just about what you eat………..

NET Cancer patients need specialist dietary advice covering the whole spectrum from diet itself to the use of supplements where required, post-surgical advice, managing the long-term side effects of treatment, combatting and treating malabsorption and nutrient deficiencies caused by the complexities of their cancer or the consequences of their treatment. Personally, I think more resources and research in this area would be useful.

This gap is one of the reasons why I asked Tara Whyand (a dietician with specialist Neuroendocrine Cancer knowledge) to help me co-author a series of blogs to focus in on a few key areas.  I didn’t want to say what someone should or should not do, I wanted to say why this is an area to watch.  The ‘why‘ is important as it helps you in your efforts to distinguish the effects of a syndrome or a co-morbidity from the effects of your treatment (if applicable).  I find this knowledge helps me to think ‘outside the box’ rather than just accepting ‘it’s the syndrome.  I personally feel I’ve been able to harness this knowledge to improve my QoL.

Article 1 – Vitamin and Mineral Challenges

Article 2 – Malabsorption

Article 3 – Gut Health

Article 4 – Food for Thought

Article 5 – Pancreatic Enzyme Replacement Therapy (PERT) (includes a Q & A session with Tara Whyand)

The following blogs may complement this nutrition series:

The Diarrhea Jigsaw

The Constipated NET patient

Serotonin

I now take food with my pills

Thanks for reading

Ronny

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

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


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Lanreotide – Four more years

The UK general election steps up a gear this month and social media is playing a huge part in the debate leading up to 7 May 2015.  In the USA, the different parties are busily working on their candidates ready for 2016. It appears that politicians worldwide, are keen to exploit all areas of communication to eke out votes from the young and old who now use social media on a scale which makes 4 or 5 years ago look prehistoric. In 2012, Barack Obama’s ‘four more years’ tweet was the biggest retweeted post ever up to that point after he thanked his 22 million followers.  He took the top spot from Justin Bieber but was then overtaken last year by Ellen De Generes’s famous mass celebrity selfie.

Four years ago, I thought Twitter was only for famous people, I was a low to medium user of Facebook for the odd joke and family photo and I thought blogs were only for journalists.  However, I had other things going on and wasn’t worried about such ‘trivia’.  Four years ago, I commenced my post-surgical and long-term treatment for metastatic Neuroendocrine Cancer.  You can read more about my journey here – my diagnosis and the intervening period leading up to my first big surgery – I woke up on NET Cancer Day.

When I left the hospital, I knew I would be starting long-term monthly ‘somatostatin analogue’ treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed 90 mg Lanreotide (Somatuline Autogel, known in the USA as Somatuline Depot). Although I didn’t relish the thought of any injection in the ‘rear end’ every 28 days for the rest of my life, I admit to being slightly relieved.  I had been reading about patient experiences with the alternative, mainly the needle length and the occasional problems mixing the drug prior to injection.  Although Lanreotide has a similar gauge (thickness), the needle is a good bit shorter and is deep subcutaneous rather than Octreotide LAR’s intramuscular (IM) route. No mixing is required as Lanreotide comes prefilled.  I’ve just chalked up “butt dart” number 53 last week!

If you are interested in the science, please be aware that a somatostatin analogue is a synthetic (manufactured) version of a naturally occurring hormone which inhibits the peptides and amines that can be dangerously hypersecreted by certain neuroendocrine tumours.  If you are after a more technical explanation of this process, you should check out my blog Neuroendocrine Tumours – not an exact science! – inside you will find a link to a fantastic paper by Dr Eugene Woltering, one of the world’s top NET Cancer experts.

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Whilst I was waiting for my first major ‘debulking’ surgery and after checks to confirm if my tumours were ‘avid’ to somatostatin analogues, I was prescribed daily Octreotide (self injecting) and this did eventually lessen the main effect of my ‘carcinoid syndrome’, facial flushing.  It wasn’t until after this surgery that the facial flushing was dramatically reduced although I do remember a minor occurrence within a month.  I started Lanreotide in Jan 2011 and I haven’t had a facial flush since.  However, it’s worth adding that my Chromogranin A (CgA) blood test (correlated to tumour mass) did not return to normal until after a liver resection 3 months later.  My 5HIAA urine test results (correlated to serotonin levels) returned to normal earlier indicating the Lanreotide was doing its job!

Octreotide/Lanreotide side effects are to be expected and most people seem to have different and/or greater or lesser effects than others.  The daily Octreotide did not bother me too much other than some discolouring of the stomach at the injection sites (i.e. black and blue!) ….I’m more observant nowadays, so it’s possible I may not have recorded this properly. The monthly Lanreotide has caused only minor issues and the ones I’ve encountered are already well documented side effects. I always try to be careful not to immediately assign blame for certain side effects which I’m fairly confident are as a result of my new ‘plumbing’ rather than the Lanreotide.  The main adverse side effects I’m sure can be attributed to Lanreotide are:

– itching but only on the legs below the knees centred on the ankles – and nearly always the right leg.  I have no idea why but even after my injection last week, this still happened!  It is not as intense as 2011 and only lasts for about a week after the injection.  Occasionally, the injection site will itch but only for a day or two.  I have a tub of emollient cream (almond oil) on standby which seems to calm it down.

– minor pain at the injection site but this only lasts for an hour or two and I believe this to be associated with the administration of the injection.  My experience is that a lack of training or confidence hurts more!  I always instruct the injector to stick the needle in fast and release the contents slow (min 20 seconds) and no pinching the skin!  Watch a useful injection video here.   You can self inject Lanreotide (upper thigh area) but I’m not ready for that yet!

– small lumps form at the injection site which is alternating superior external quadrant of the buttocks.  They are more conspicuous if the injection is done slightly too high which was my initial experience and they took months to fade.  I opted to stand up for the first two injections and I attribute this decision for a slightly too high injection site.  I now lie down which is actually recommended for the smaller and thinner patient.

– fatigue normally within 24-48 hours of the injection. Not even sure it can be classed as proper fatigue but it’s a ‘you need to sit down and fall asleep’ feeling! It normally only lasts for 1 day before the normal energy levels return.

– although the side effects of small intestinal surgery and gallbladder removal can cause malabsorption issues, in particular the inability to digest fat properly; somatostatin analogues can exacerbate steatorrhea as they inhibit the production of digestive enzymes which aid fat digestion.  I notice a marked and short-term increase in this problem normally within 72 hours of the injection.

Four years ago, there was some ‘talk’ that somatostatin analogues were also able to stunt or reverse the growth of certain neuroendocrine tumours.  Has this been the case for me?  Possibly.  I’ve had regular CT scans every 3-6 months and since two bouts of major surgery in 2010/2011, I’ve also had 2 x Octreoscans (the most recent incorporating a SPECT).  I did once spend a day analysing 4 years of scan results looking for variations in size and concluded that there was a stable trend and potentially a fading of one or two of my largest liver tumours. I was reminded these two types of scans were not really precise enough to detect small millimetre increases or decreases and as there were other factors at play, there was little commitment to make this declaration.  However, I did note in the summary of the CLARINET study, Lanreotide was associated with prolonged progression-free survival among patients with advanced, grade 1 or 2 (Ki-67 <10%) enteropancreatic, somatostatin receptor–positive neuroendocrine tumours with prior stable disease, irrespective of the hepatic tumour volume.  In terms of its anti-proliferative effects, an interim report from the CLARINET extension study suggested longer-term Lanreotide treatment is well tolerated with ‘anti-tumour’ effects in patients with progressive disease.

I have my ups and downs and I do feel quite well most of the time.  Most people tell me I look quite well too!  Over the last 4 years I’ve made some fairly significant adjustments to cope with my condition and maintain a reasonable quality of life – my monthly injection of Lanreotide is no doubt playing a big part.

So ‘four more years’ of Lanreotide gets my vote and I’d like to tell the world! I just wish I had 22 million twitter followers to help with my message 🙂  A retweet by Ellen De Generes, Barack Obama or Justin Bieber would help though!

(Check out my blog “5 years of Lanreotide“)

Thanks for reading

Ronny Allan

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

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Neuroendocrine Cancer – Hormones

HormonesNET 2018

Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn’t have a clue about hormones – it’s one of those things you just take for granted. However, hormones are vital to human health (male and female) and it’s only when things go wrong you suddenly appreciate how important they are ……..like a lot of other things in life I suppose! The presence of over-secreting hormones (often called peptides throughout) is useful to aid diagnosis albeit it often means the tumours have metastasized. It’s also a frequent indication that the person has an associated NET syndrome.

This is a really complex area and to understand the hormone problems associated with Neuroendocrine Cancer, you need to have a basic knowledge of the endocrine and neuroendocrine systems.  I’ve no intention of explaining that (!) – other than the following high level summary:

  • Glands in the endocrine system use the bloodstream to monitor the body’s internal environment and to communicate with each other through substances called hormones, which are released into the bloodstream.  Endocrine glands include; Pituitary, Hypothalmus, Thymus, Pineal, Testes, Ovaries Thyroid, Adrenal, Parathyroid, Pancreas.
  • A Hormone is a chemical that is made by specialist cells, usually within an endocrine gland, and it is released into the bloodstream to send a message to another part of the body. It is often referred to as a ‘chemical messenger’. In the human body, hormones are used for two types of communication. The first is for communication between two endocrine glands, where one gland releases a hormone which stimulates another target gland to change the levels of hormones that it is releasing. The second is between an endocrine gland and a target organ, for example when the pancreas releases insulin which causes muscle and fat cells to take up glucose from the bloodstream. Hormones affect many physiological activities including growth, metabolism, appetite, puberty and fertility.
  • The Endocrine system. The complex interplay between the glands, hormones and other target organs is referred to as the endocrine system.
  • The Neuroendocrine System. The diffuse neuroendocrine system is made up of neuroendocrine cells scattered throughout the body.  These cells receive neuronal input and, as a consequence of this input, release hormones to the blood. In this way they bring about an integration between the nervous system and the endocrine system (i.e. Neuroendocrine).  A complex area but one example of what this means is the adrenal gland releasing adrenaline to the blood when the body prepares for the ‘fight or flight’ response in times of stress, ie, for vigorous and/or sudden action.

Hormones – The NET Effect

Hormones – the NET Effect

At least one or more hormones will be involved at various sites and even within certain syndromes, the dominant and offending hormone may differ between anatomical tumour sites. For example, NETs of the small intestine, lung or appendix (and one or two other places) may overproduce serotonin and other hormones which can cause a characteristic collection of symptoms currently called carcinoid syndrome.   The key symptoms are flushing, diarrhea and general abdominal pain, loss of appetite, fast heart rate and shortness of breath and wheezing. The main symptom for me was facial flushing and this was instrumental in my eventual diagnosis. The fact that I was syndromic at the point of diagnosis made it easier to discover, albeit the trigger for the investigation was a fairly innocuous event.  Other types of NETs are also affected by the overproduction of hormones including Insulinomas, Gastrinomas, Glucagonomas, VIPomas, Somatostatinomas, and others.  These can cause their own syndromes and are not part of carcinoid syndrome as some organisations incorrectly state. For more on NET syndromes – Read Here.

So are hormones horrible? 

Absolutely not, they are essential to the normal function of the human body.  For example if you didn’t have any of the hormone Serotonin in your system, you would become extremely ill.  On the other hand, if your glands start secreting too much of certain hormones, your body could become dysfunctional and in some scenarios, this situation could become life threatening.  So hormones are good as long as the balance is correct. NET patients with an oversecreting tumor may be classed as “functional”.

  • Functional tumors make extra amounts of hormones, such as gastrin, insulin, and glucagon, that cause signs and symptoms.
  • Nonfunctional tumors do not make extra amounts of hormones. Signs and symptoms are caused by the tumor as it spreads and grows. Many NET patients are deemed to be “non-functioning” with normal hormone levels. It’s also accurate to say that many can move from one stage to the other.

Location Location Location

It’s accurate to say that the type and amount of hormone secretion differs between locations or sites of the functional tumor and this can also create different effects.  The division of NETs into larger anatomical regions appears to differ depending on where you look but they all look something likes this:

Foregut NETs: In the respiratory tract, thymus, stomach, duodenum, and pancreas. This group mostly lack the enzyme aromatic amino decarboxylase that converts 5-HTP (5-Hydroxytryptophan – a precursor to serotonin) to serotonin (5-HT); such tumours tend to produce 5-HTP and histamine instead of serotonin.  The Pancreas is a particularly prominent endocrine organ and can produce a number of different syndromes each with their associated hormone oversecretion – although many can be non-functional (at least to begin with). Please note the respiratory tract and thymus are not really ‘Foregut’ but grouped there for convenience. 

Midgut NETs: In the small intestine, appendix, and ascending colon. For example, serotonin secreting tumors tend to be associated with carcinoid syndrome which tends to be associated with midgut NETs and this is normally the case. Many texts will also tell you that a syndrome only occurs at a metastatic stage.  Both are a good rule of thumb but both are technically incorrect. For example, in the bronchus or ovary you can have a form of carcinoid syndro