I now take food with my medicine!


vitamin-supplements_650x450-002

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

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

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

  • Apixaban (Eliquis).  To prevent a recurrence of pulmonary emboli (PE). Unfortunately, I had PE after my big surgery in 2010. 2 per day.
  • Pancreatic Enzyme Replacement Therapy (Creon).  Recently added, anything between 6 and 12 per day depending on what I eat.  Check out this article on PERT.  Check out this article on Malabsorption with references to NET dietitians.
  • Multi-Vitamin (50+ age).  I’ve actually been taking these since a few years before diagnosis in 2010.  NET patients can be at risk of vitamin and mineral deficiencies.  Check out this article on the issues and with references to NET dietitians.
  • Vitamin B Complex. This was added in 2013 to mainly tackle low B12 (despite my multi-vit containing 400% RDA) and it seemed to help with fatigue.  Read more here.
  • Vitamin D3. This was also added in 2013 to tackle low Vit D levels (again, despite my multi-vit containing 200% RDA). 10µg (400iu).  D3 is normally the recommended form of Vitamin D to take, easiest to absorb and more natural.  Vitamin D3 is also known as cholecalciferol.  Many people who do not live in sunny countries are probably deficient or borderline already.
  • Probiotic.  This was also added in 2013 to try to offset some of the abdominal issues that many NET patients seem to have.  I take a 5 billion dose and it seems to help.  Check out this article with references to NET dietitians.
  • Omega 3.  This is also something I had been taking since before my diagnosis.  I think I took it for a couple of reasons, my diet did not really include foodstuffs containing Omega 3 and I was experiencing some joint pain in my hands.  I just never stopped taking it.  Dose size 1000mg.
  • Lanreotide (Somatuline Autogel).  An injection rather than a pill/capsule.  Quite a big chap!  You can read all about my relationship with Lanreotide by clicking here.
  • Levothyroxine. One 50mcg tablet each morning.  My blood tests are indicating hypothyroidism – check out my whole thyroid story by clicking here.  All NET patients need to keep an eye on thyroid levels.  Read why here.
  • Seretide and Ventolin.  These are asthma drugs, a preventer and a reliever respectively.  I hardly ever take the latter nowadays.  I had mild asthma as a child, it went at 16 and came back at 35.  I take 2 puffs of Seretide night and day.  Seems to help.  Ventolin seems to be only required if I have a cold or flu thing going on.

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

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

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

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

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

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


find net specilaist and 10 qeusitons

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

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

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

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

Finding experts

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

Europe – here at ENETS: European NET Centres of Excellence

UK – here at UKINETS: UK NET Centres

USA:

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

Australia – here: Australian NET Doctors

New Zealand – Dr Ben Lawrence, based in Aukland.

Canada (from patient knowledge):

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

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

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

AskDoctor_0

Neuroendocrine Cancer – 10 questions to ask your specialist

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

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

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

Pre-question Check

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

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

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

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

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

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

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

3. What is the stage of my disease?

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

4. Do I have a NET Syndrome?

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

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

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

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

A small percentage of NETs are hereditary/genetic in nature.  This is mostly associated with those who have Multiple Endocrine Neoplasms (MEN) syndromes  and a few other less common types of NET including Pheochomocytoma / Paraganglioma(Pheo/Para) and Medullary Thyroid Carcinoma (MTC) (the familial version of MTC is often referred to as FMTC). However, please note this does not mean that all those diagnosed with pancreatic, parathyroid, pituitary, Pheo/Para and MTC tumours, will have any hereditary or genetic conditions, many will simply be sporadic tumors.

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

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

8. What Surveillance will I be placed under?

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

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

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

10. How will treatment affect my daily life?

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

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

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

Let’s not forget about the consequences of cancer

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

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

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

Unmet Needs for NETs

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

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

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

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

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

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

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

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

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

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

Thanks for listening

Ronny

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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!

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

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

Steve Jobs died 5 Oct 2011.  RIP Steve, you certainly made a difference to the world of technology and that is still being felt today.  I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That’s interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported.

There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary – click here to read more. 

pancreatic vs neuroendocrine

I’ve mentioned Steve Jobs a few times previously, mainly in my blog The Human Anatomy of Neuroendocrine Cancer. I wrote that blog when I was frustrated about the constant misreporting of Neuroendocrine Cancer as other types of cancer. Others included Nick Robinson (see blog The Devil is in the Detail) and Wilko Johnson (The Ecstasy of Wilko Johnson).  I’ve also suggested in my blog ‘Every Day is NET Cancer Day’ that we need high-profile patient Ambassadors and despite his death, Steve Jobs would have been quite a catch, had he been willing. Curiously, the same thing is happening with Dag Kittlaus (Siri creator) who was diagnosed with a pNET last year.  To add insult to injury, the 2018 death of Aretha Franklin is gong the same way.

A lot has been written about Steve’s cancer experience and much of it is full of ‘what ifs’. However, I’d like to focus on the facts that are known and we can be almost certain about. That said, the precise detail that we (as NET patients) might want, is probably only to be found in Steve Jobs’s medical documents. Many people say that Steve Jobs had a right to personal privacy and I agree, nothing I put here isn’t already in the public domain.

Diagnosis

How was it found?  In 2003, Steve was having a CT scan to examine his kidneys and ureter, as he had developed recurrent kidney stones beginning in the late 1990s. A suspicious lesion was spotted on his pancreas. To cut a long story short, he eventually had more specialist scans and then a biopsy which diagnosed a type of Neuroendocrine Tumour.  There are many mentions of Insulinoma, a pNET which is reported to have a 10% malignancy rate (ISI Book – Woltering et al). It isn’t clear whether Steve had any presentational symptoms of an Insulinoma at this point (i.e. hypoglycemia).  There is also some chatter online about his tumour being a Glucagonoma (another type of pNET).

Initial Treatment

Steve initially tried alternative medicine before having surgery 9 months after diagnosis. There are reports of his medical team urging surgery earlier and his biographer stated that Steve had later regretted this delay. One of his Doctors is reported to have said “Steve was a very thoughtful person. In deciding whether or not to have major surgery, and when, he spent a few months consulting with a number of physicians and scientists worldwide as well as his team of superb physicians. It was his decision to do this”.  He is reported to have gone on to have a ‘Whipple’ type operation in 2004.  It was only then, that his condition was made public.  During that operation, 3 lesions were reported on his liver.

Ongoing Treatment and Surveillance

Most NET patients enter this phase after their initial treatment, it’s also the period where you learn about the cancer and how best to live with it.  There’s not much written about Jobs’ illness between his surgery and his liver transplant but my research uncovered a useful timeline from Bloomberg and other sources:

June 12, 2005: Jobs talks about his fight with cancer during a commencement speech at Stanford University. He says he was diagnosed about a year earlier and that doctors told him he wouldn’t live longer than six months. The cancer turned out to be a form that was treatable with surgery, “and I’m fine now,” he says. Source Bloomberg.  {Author’s note:  an indication he had been told, or his doctors knew, it was a Neuroendocrine Tumor}

January 24, 2006:  Walt Disney chief executive Bob Iger knew early on that Steve Jobs’s cancer had returned and kept it a secret before it became public knowledge, a new biography of Apple’s late chief executive reveals. The day the deal was officially announced, Mr Iger said he was at Pixar’s headquarters for the ceremony when Jobs asked to go for a private walk. On a secluded part of the Californian campus Jobs put his arm around Mr Iger’s shoulder and revealed his cancer was back. “Frankly, they tell me I’ve got a 50-50 chance of living five years,” the Disney CEO quoted Jobs as saying.

2007:  Not much out there except that he was busy launching what might be regarded as Apple’s most successful and iconic product ever – the iPhone.

June 9, 2008: Jobs, while introducing the iPhone 3G at Apple’s developers’ conference, appears thinner and frail. The company blames a “common bug.”

July 21, 2008: Responding to concerns about Jobs’s appearance, Apple says he has no plans to leave the company and that his health is a private matter. Investors aren’t reassured, and the shares fall 10 percent.

July 23, 2008: The New York Times reports that Jobs has been telling associates and Apple’s board he is cancer-free. Jobs had a surgical procedure earlier in the year to address a problem that contributed to his weight loss, the newspaper reports, citing unnamed people close to the executive. The shares climb 2.6 percent.

July 26, 2008: New York Times columnist Joe Nocera writes that he spoke two days earlier on the phone with Jobs, who said his health problems weren’t life-threatening. Jobs declines to go on the record about the nature of his ailment.

Sept. 9, 2008: Jobs, introducing new iPod media players at an event in San Francisco, still looks thin. “Reports of my death are greatly exaggerated,” Jobs jokes. Munster says that while the CEO’s appearance is unchanged since June, “Just the fact that Steve Jobs was up there was a positive.”

Oct. 3, 2008: A posting on CNN’s citizen journalist Web site, called iReport.com, says Jobs has been rushed to the hospital after a “major heart attack.” The shares fall 5.4pc. The stock rebounds after Apple says the report is false.

Dec. 16, 2008: Apple says that Jobs won’t be giving his usual speech at the Macworld conference, renewing concerns about his health. Jobs had used the forum to introduce new products for 11 straight years.

Jan. 5, 2009: Jobs says he is suffering from a hormone imbalance, causing him to lose weight. Jobs vows to remain CEO during treatment. “The remedy for this nutritional problem is relatively simple and straightforward,” Jobs says in an open letter.

Jan. 14, 2009: Jobs gives up day-to-day operations to Cook until June, saying his health problems are more complex than originally thought. Jobs says he will remain involved in major strategic decisions. “I look forward to seeing all of you this summer,” he says in a letter to employees.

By this stage, his cancer is already starting to take its toll on how he looks.

The disease takes its toll over the years

Liver Transplant 2009

It is common knowledge that Jobs had a liver transplant in 2009 in Tennessee (he was on the list in California and Tennessee).  In between his Whipple and then, he appears to have lived (and worked) with his disease and it’s consequences. His issues appear to have been exacerbated by his excessive vegan diet/fads and the effects of the Whipple surgery (many of you will be aware of these effects). For example, he would spend weeks eating the same thing and then suddenly change his mind and stop eating it. He’d also go on fasts. His condition immediately prior to the liver transplant was said to be ‘poor’ and losing more weight (he had been noticeably thinner for some time).

Did Steve Jobs get ‘experimental’ PRRT?

Jobs took a second medical absence for roughly six months in 2009. It wasn’t until June 20th, two months after the fact, that the Wall Street Journal uncovered the fact that Jobs had undergone a secret liver transplant at Methodist University Hospital in Memphis, Tennessee. However, during that absence, Fortune reported Jobs also took an unpublicized flight to Switzerland to undergo an ‘unusual radiological treatment’ (PRRT) at the University of Basel for neuroendocrine cancer, according to Jerry York, the Apple director who died in March 2010.

Post-Liver Transplant

In 2010, Jobs started to feel sick again. He would lose his appetite and begin to feel pains throughout his body. His doctors would do tests, detect nothing, and reassure him that he still seemed clear.  In early November 2010, he was in pain, stopped eating and had to be fed intravenously by a nurse who came to his house. The doctors found no sign of more tumours, and they assumed that this was just another of his periodic cycles of fighting infections and digestive maladies.

Heres’ a great bunch of TV interviews (something Jobs didn’t do very often).  “The last few years have reminded me that life is fragile”.  Click here (worth watching the whole 10 minutes). His final TV appearance was in June 2011 to the Cupertino City Council about the acquisition of land for their new campus.  Worth watching some of it: Click here.

The End

In early 2011, doctors detected the recurrence that was causing these symptoms. Ultimately, he developed liver, bone, and other metastases.  He had a further extended leave of absence from his job before stepping down as Apple CEO in Aug,  Steve Jobs eventually died 5 Oct 2011.

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

References

Notwithstanding the Pancreatic Cancer vs Neuroendocrine Cancer issue, I carried out my research mainly using two articles of the many you can find out there:

  1.  “And one more thing” about Steve Jobs’ battle with cancer
    This is a long article and totally fascinating.  Some of the evidence is presented using extracts from Walter Isaacson’s book ‘Steve Jobs’
  2. A Tumor Is No Clearer in Hindsight.  This article comes to similar conclusions than the one above but it’s shorter and easier to read. It’s from the New York times and was written after the dust settled on Jobs’ death (i.e. when more facts were available). There is also input to this article from NET specialists Dr Wolin and Dr Libutti.

  3. Apple chief Steve Jobs: Health timeline since 2003.  This article is from a UK National Newspaper (The Telegraph) but via US Business Publication Bloomberg.

Personal Summary

“A tumor is no clearer in hindsight” is a good summary on the basis that I would have liked much more detail!  During my research, I found many mentions of Insulin as stated above but only one or two mentioning Glucagon, a hormone associated with another pNET type – Glucagonoma. However, looking at this tumor type in the ISI Book (Woltering et al) and the Jobs diagnostic and treatment story, I have some doubts whether this was the precise tumor type. I have some other searches in progress hoping to find something concrete.

Thinking Differently There is no doubt that Steve Jobs was an amazing and very interesting character.  You just can’t see Apple being the Apple it is today without his intervention.  He was famous for being ‘unconventional’ and ‘thinking different’ and I get that element of his character.  I just can’t help thinking that perhaps he should have been more ‘conventional’ with this thinking and approach to treating his cancer. However, we just don’t know what advice he was receiving and what advice he accepted or rejected.  As for the ‘Pancreatic Cancer’ thing – I’ve said this before, I believe patients only say or interpret what their doctors say to them in regards cancer type.

“The most famous patient ambassador we never had”.  I don’t mean any disrespect by that, I’m just emphasising that we need so much more awareness of our cancer and a high-profile patient could do so much to help in this area. If he was so inclined, Steve would have been a fantastic advocate for Neuroendocrine Cancer and there’s an area where perhaps thinking different might be the way ahead. However, I have a suspicion that very famous people don’t really want to talk about their illness and Steve Jobs might even perceive that as a weakness.

And one more thing …….  you may also find this article useful.  It’s titled “And one more thing”

 

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 Treatment for Neuroendocrine Cancer and Other Conditions

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.

Other conditions may actually be the cause of the diarrhea or the treatment for those conditions.  For example, it is possible that people actually do have Irritable Bowel Syndrome (IBS).  Treatment therapy for common conditions may also be contributing, for example the use of Proton Pump Inhibitors for acid reflux.

 

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

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!

As for my own strategy,  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 (changed to Nutrizym Feb 2019) 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 1.5).  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

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!

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

 

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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

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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.  When I say “carcinoid syndrome” in this article, I only mean the syndrome that is caused by what was once called “Carcinoid Tumors”, i.e. mainly serotonin secreting types but include tumours which are well differentiated found in the small intestine, appendiceal, rectal, lung, and one or two other less common places.

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 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 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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Neuroendocrine Cancer Nutrition Series – Article 3 – Gut Health

OPINION.  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 and for most countries without adequate NET Specialist Dietitian support, it remains an unmet need. In this article, I’m discussing the use of probiotics to combat the potential issue of small intestine bacterial overgrowth (SIBO) in Neuroendocrine Tumours.  

When I first indicated this nutrition series was under construction, a few people got quite excited anticipating me to produce advice on what to eat.  However, that was never my intention. What people should or should not eat is such a varied problem (or solution?) that anything I said would only really be of help to those for whom it worked – this area is not an exact science. I’ve seen 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.

What my nutrition series actually covers is what causes the nutritional related issues and to a certain extent, try to work out how to tell if these issues are caused by either treatment or an associated syndrome, leaving fellow patients to make up their own minds about what to eat; or arm themselves with the necessary knowledge whether this applies to them or not.

The first two articles in the series were Article 1 – Vitamin and Mineral Challenges and Article 2 – Malabsorption. These remain popular and have a constants stream of views – no surprises as these are well known side effects of many types of NETs…… or at least they should be well known.

This particular article “Gut Health” 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 the issues.  Again I’m grateful to Tara Whyand (NET Specialist Dietician and researcher from Royal Free London) for some of the input below. Although I marked this with ‘Opinion’, some of it has references but I still decided to use ‘Opinion’ as the science is not yet 100%.

What is the “Gut” ?

When I first met my surgeon, I found one of his favourite words 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 when you look at these contextual uses of the word, 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 and grouping of Neuroendocrine primary tumours, although the boundaries and constituent parts can vary from site to site.  The inclusion of certain anatomical locations as a sub-section of the gut is clearly for convenience rather than anatomical accuracy (e.g. Lung).

This is a massive subject but I wanted to ‘cut to the chase’ in this article and focus on the use of probiotics to combat the potential issue of small intestine bacterial overgrowth (SIBO) in Neuroendocrine Tumours.  The symptoms and signs of SIBO can be similar to they symptoms and side effects of treatment that many patients report anecdotally on patient forums.  I also found the science is complex and not really 100% tied down.

Probiotics

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 didn’t really understand why, I just complied. 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 realised that the supermarket drinks and yoghurts were simply not enough good bacteria for my ‘new plumbing’, and decided to take a high-grade daily capsule containing 5 billion friendly bacteria multiple strains (Tara does recommend at least 2 billion and multiple strain).  Within weeks I was noticing a difference in bowel motility although I confess to changing other elements of my lifestyle at the same time given that I was embarking on finding my new normal.  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.

Bacteria

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 are said to help keep the balance and mix of bacteria stable within the gut which can be affected by many different factors, including the use of 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 or have had gut surgery (or like me you are a total geek!).  They are also frequently used in Irritable Bowel Syndrome (IBS).

Small Intestine Bacterial Overgrowth (SIBO)

Another interesting area of research into something called Small Intestinal Bacterial Overgrowth (SIBO), a condition where the small intestine is populated by an abnormal amount and/or types of bad bacteria. It follows that probiotics (good bacteria) may be useful in combatting this by helping to maintain balance.

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 Proton Pump Inhibitors (PPI) (e.g. omeprazole and lansoprazole, etc). Several studies link to these drugs including this one,
  • possibly long term use of antibiotics which can kill good bacteria.Some evidence of surgical involvement can be found here – this link – 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).

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.  These symptoms are regularly reported by patients so working out the root cause might need some professional help.

Is there any testing for SIBO?

There is a test to check for SIBO is 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. However, advice is to leave a 2 hour gap between taking probiotics and antibiotics and a high dose multi-strain probiotic should be applied.  Our friend Tara has done some work on this alongside Professor Martyn Caplin which was featured at ENETS 2017.

ENETS Research – Assessment of Small Intestinal Bacterial Overgrowth (SIBO) in NET Patients Abstract #1698

Introduction: SIBO is not uncommon in NETs. Hydrogen Breath testing (HBT) using glucose may be more sensitive to proximal SIBO as glucose rarely reaches the colon. Many NET patients are likely to have distal SIBO however, as factors such as ileocecal valve removal apparently increase distal SIBO risk. Thus glucose BT alone may limit sensitivity for detecting SIBO in some NET diagnoses.

Aim(s): Assess likely risk factors for SIBO. Assess sensitivity of additional lactulose HBT and CH4 BT.

Materials and methods: Retrospective data (n=55) of NET patients undergoing HBT was examined. Twelve patients (12/55) who tested negative for glucose HBT but continued to have diarrhoea +/- wind had repeat BT using lactulose. These patients had both H2 & CH4 BT.

Results:
Midgut NET diagnoses were most frequently referred for BT (n=43, 78%). Twenty four (24/55, 44 %) had prior right hemicolectomy. Ten (10/24 ,42%) of those were SIBO positive. Ten patients were positive for HBT prior to being given the glucose substrate, they all had abdominal surgery in the past. Twelve patients who tested negative for glucose HBT had repeat testing using lactulose and measured both H2 and CH4 production. This led to an additional 3 (25%) positive results.

Conclusion:
Abdominal surgery, especially right hemicolectomy increases the likelihood of a positive glucose HBT. Glucose may still be sensitive in those with risk factors for distal SIBO. Additional lactulose use with H2 and CH4 measurement increases the sensitivity in diagnosing SIBO.

Conference:
14th Annual ENETS conference (2017)
Presenting Author: Tara Whyand

Keywords: nets, sibo, dysbiosis

My own Experience

I personally take a 5 billion dosage and am happy to recommend the source offline. However, in addition to obtaining from a reputable provider (i.e. in UK, MHRA approved supplier), there is evidence 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.

This article 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?

None of this should be considered medical advice. 

Thanks for reading

Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis

Early signs of a late diagnosis (2)One of the curious things about Neuroendocrine Cancer (NETs going forward) is that it can very often exhibit one or more vague symptoms collectively known as a ‘syndrome’.  Syndrome is an apt word to describe these complications as the most general meaning in medical terms is a group of symptoms that together are characteristic of a specific disorder or disease”.  Having a syndrome can often be the difference between having a ‘functional’ condition or a non-functional’ condition – see more below.

This frequently makes Neuroendocrine Cancer very difficult to diagnose quickly.  It’s a very devious disease.

It’s not all about Carcinoid Syndrome!

Most people think of Carcinoid Syndrome when they discuss NETs. Anyone suggesting that all NET patients get carcinoid syndrome or that all symptoms of NETs are caused by carcinoid syndrome, is WAY off the mark. Firstly, not everyone will have a ‘syndrome’ in addition to their tumours – the percentage is actually well below 50%. Secondly, there are in actual fact, several associated syndromes depending on the anatomical location and type of NET. As an example of one syndrome, statistics vary from source to source but it is estimated that around a 30-45% of all ‘midgut’ patients will present with metastatic disease and around a third of those (∼10-15% of all midgut) will exhibit Carcinoid Syndrome indicating their tumours are ‘functional’ (secreting excess hormones, particularly serotonin).  It follows that Carcinoid Syndrome itself is not that common and it could be the same with other types of NET (even though it can appear more prevalent on forums).

Diagnostic Challenges in NETs (this graphic only covers so-called Carcinoid Syndrome).  Inner segments are the key symptoms, outer segments are some of the potential misdiagnosis/delayed diagnosis. Graphic courtesy of Modlin IM, Kidd M, Latich I, et al. Current status of gastrointestinal carcinoids. Gastroenterology 2005; 128: 1717-1751

Functional / Non-Functional

These tumours and associated syndromes are treatable for most but the difficult part can be arriving at a diagnosis. Moreover, without a syndrome, some of these tumours can be silently growing and as they grow slowly, the ‘silence’ can go on for some years. Even with a syndrome, the root cause can remain disguised as the symptoms are similar to many day-to-day illnesses, again the reason for the title of this blog. Curiously, the lack of a syndrome can sometimes lead to an even later presentation and the consequences that arise (i.e. no signs to aid a diagnosis). In fact a large proportion of Pancreatic NETs are non-functional at diagnosis. There can be the odd exception but in general terms, NETs are either functional (with a syndrome) or non-functional (no syndrome). It’s also possible that patients can move from one state to another.

It’s useful to know about the range of tumor markers and hormone markers – read more here

Syndrome and Tumors – ‘Chicken or Egg’ ?

I’m always confused when someone says they have been diagnosed with a Syndrome rather than a NET type.  You normally need a tumor to produce the symptoms of a syndrome.

The exception might be hereditary syndromes e.g. MEN.  MEN syndromes are genetic conditions. This means that the cancer risk and other features of MEN can be passed from generation to generation in a family. A mutation (alteration) in the various MEN genes gives a person an increased risk of developing endocrine/neuroendocrine tumors and other symptoms of MEN. It’s also possible that the tumors will be discovered first.  It’s complex!

Major NET Syndromes  

(information mainly taken from the ISI Book on NETs with a cross-reference from ENETS and UKINETS Guidelines)

The ISI Book on Neuroendocrine Tumors 2016 (Woltering et al) confirms there are a number of syndromes associated directly and indirectly with NETs and are described as individual syndromes according to their secretory hormones and peptides. The reference publication expands on this list to aid diagnoses by including common presentations, associated tumour types and locations and the offending secreting hormones. You can see why Neuroendocrine Cancer is a diagnostic challenge!

Carcinoid – a syndrome connected with (mainly) serotonin secreting tumours in certain locations (mainly small intestine, lung, stomach, appendix, rectum). The key symptoms include diarrhoea, flushing of the skin (particularly the face), stomach cramping, heart problems such as palpitations, and wheezing. The syndrome is actually caused by the release of a number of hormones, in particular Serotonin, Bradykinin, Tachykinin (Substance P), Histamine, and Prostaglandins.

(there’s also a very rare instance of pancreatic based tumours producing carcinoid syndrome effects – according to ENETs less than 1% of all tumours associated with carcinoid syndrome)

Whipple’s Triad – Whipple’s Triad is the classic description of insulinoma which includes symptoms of hypoglycemia with a low blood glucose concentration relieved by the ingestion of glucose. These tumours can be located anywhere within the pancreas in the cells that make insulin. Insulin is a hormone that controls the amount of  glucose (sugar) in the blood. It moves glucose into the cells, where it can be used by the body for energy. Insulinomas are usually slow-growing tumors that rarely spread. Some of these tumours will be associated with MEN1 syndrome.

Zollinger-Ellinson SyndromeA tumour that forms in cells that make gastrin and can be known as a Gastrinoma. Gastrin is a hormone that causes the stomach to release an acid that helps digest food. Both gastrin and stomach acid are increased by gastrinomas.  This is a condition in which one or more tumours form in the pancreas, the upper part of the duodenum or the stomach (these organs are very close and tightly packed together). These tumours secrete large amounts of the hormone gastrin, which causes your stomach to produce too much acid. The excess acid can lead to peptic ulcers, in addition to diarrhea and other symptoms.  Associated with Gastrinoma (pNET) and Gastric NETs.  Some of these tumours may be associated with MEN1 syndrome.

Werner-Morrison SyndromeVasoactive Intestinal Peptide (VIP) is secreted thus the pNET term – VIPoma –  Sometimes the syndrome is referred as WDHA – Watery Diarrhea, Hypokalemia (potassium deficiency), and Achlorhydria (absence of hydrochloric acid in gastric secretions).  Sometimes known as Pancreatic Cholera. Some of these tumours may be associated with MEN1 syndrome

Glucagonoma.  A tumour that forms in cells that make make glucagon. Glucagon is a hormone that increases the amount of glucose in the blood. It causes the liver to break down glycogen. Too much glucagon causes hyperglycemia (high blood sugar) rendering most patients diabetic. A glucagonoma usually forms in the tail of the pancreas.  Some of these tumours may be associated with MEN1 syndrome.  See also Sweet’s Syndrome below.  Sometimes known as the 4D syndrome – Dermatological, Diabetes, DVT, Depression.

Somatostatinoma is a very rare type of NET, with an incidence of one in 40 million persons. These tumours produce excess somatostatin arise from the delta cells in the pancreas, although these cells can also be present in duodenal/jejunum tissue where around 44% of these tumours occur. Somatostatin is a naturally occurring peptide that inhibits the function of almost all gut hormones (author’s note – this fact should give you an appreciation of how somatostatin analogues tackle associated syndromes whilst giving you certain side effects as a result!)

Pancreatic Polypeptide (PP)PPoma A complicated one and not too much information (even in the ISI book or ENETS Guidelines). However, it’s the third most common type of islet cell tumour (i.e. pNET).  The function of pancreatic polypeptide is not completely understood. Patients present with weight loss, jaundice, and abdominal pain. The diagnosis is confirmed by pancreatic polypeptide levels > 300 pg/ml. Some of these tumours may be associated with MEN1 syndrome.

Hedinger Syndrome – the technical name for Carcinoid Heart Disease and an ideal replacement term now that Carcinoid is being phased out.

Cushing’s – also known as hypercortisolism.  A collection of symptoms caused by very high levels of a hormone called cortisol in the body.   In Cushing’s disease, oversecretion of pituitary ACTH induces bilateral adrenal hyperplasia. This results in excess production of cortisol, adrenal androgens, and 11-deoxycorticosterone. Cushing’s disease, a subset of Cushing’s syndrome, is due to a pituitary corticotroph adenoma and results in a partial resistance to the suppression of ACTH by cortisol so that secretion is unrestrained. In contrast, causes of Cushing’s syndrome may include the following:

•   Adrenal adenoma or carcinoma arise spontaneously. ACTH levels are undetectable.

•   Non-pituitary (ectopic) tumours produce ACTH. They most frequently originate in the thorax and are highly aggressive small cell carcinomas of the lung or slow- growing bronchial or thymic carcinoid tumours. Some produce corticotropin- releasing hormone (CRH) instead, which stimulates pituitary ACTH secretion and can therefore mimic a pituitary tumour.

•   Other causes include NETs of the gastric, pancreatic, and intestinal organs; Pheochromocytomas, and MCT.

The hallmark of Cushing’s syndrome is that ACTH levels are partially resistant to suppression with dexamethasone, even at very high doses. Some MEN patients with pituitary tumours may have Cushing’s Syndrome. AdrenoCorticoTropic Hormone (ACTH) releasing tumours are somerimes known as ACTHoma.

Sweet’s – Dermatitis/rash associated with Glucagonomas.  Not to be confused with Pellagra (B3 deficiency)

Neuroendocrine / Endocrine tumors can be seen in several inherited familial syndromes, including but not limited to:

  • Multiple Endocrine Neoplasia type 1 (MEN1)
  • Multiple Endocrine Neoplasia type 2 (MEN2)
  • Multiple Endocrine Neoplasia type 4 (MEN4)
  • SDHx mutations – Hereditary Pheochromocytoma/Paraganglioma Syndromes.
  • Pituitary.
  • Von Hippel-Lindau (VHL) Disease
  • Neurofibromatosis Type 1 (also known as Recklinghausen’s Disease). Not covered further.
  • Tuberous Sclerosis (not covered further)
  • Carney Complex

see Genetics and Neuroendocrine Tumors

MEN1 – Mainly involved the 3 Ps, Pituitary, Pancreas and Parathyroid.  The pituitary tumours are primarily Prolactinomas, the pancreatic tumours are mainly PPomas, Gastrinomas and Insulinoma.  Many also have association with Zollinger-Ellinson  syndrome (ZES).  Sometimes known as Wermer Syndrome.  Associated with the MEN1 gene.

MEN2A – associated with the RET gene, can result in Medullary Thyroid Carcinoma, Pheochromocytoma, and overactive parathyroid glands characterised by a high calcium level.

MEN2B. An inherited disorder characterised by the certain development of Medullary Thyroid Carcinoma, plus the possible development of pheochromocytomas and characteristic tumours (mucosal neuromas) of the lips, tongue and bowels. Parathyroid disease is extremely rare in MEN2B.  Also connected with the RET gene.

MEN4.  A relatively new MEN variant and related to the CDKN1B gene.  Similar to MEN1 but normally only 2 of the 3 Ps, parathyroid and pituitary; and potentially other places.

SDHx mutations/Hereditary pheochromocytoma/paraganglioma syndromes

  • Succinate dehydrogenase (SDH) is an enzyme which is important for the metabolic function of mitochondria. Patients with mutations of these genes have increased risk of pheochromocytomas, paragangliomas, stomach tumors and kidney tumors.
  • SDHx mutations (SDHA, SDHB, SDHC, and SDHD) can present as Pheochromocytomas/Paragangliomas and other non-NET conditions.  If this interests you see site http://www.SDHcancer.org

Von Hippel-Lindau (VHL) – not an exclusively NET syndrome. VHL is a rare disorder caused by a faulty gene. It is named after the two doctors who first described the disease, and affects about one in 35,000 people. Tumours develop in one or more parts of the body. Many of these tumours involve the abnormal growth of blood vessels in parts of the body which are particularly rich in blood vessels. Areas most frequently affected are the eyes, the back of the brain (cerebellum), the spinal cord, the kidneys, the adrenal glands and the pancreas. People are affected differently, even within the same family. The only VHL tumour which tends to run in families affects the adrenal glands (Pheochromocytoma). Different VHL features tend to develop at different ages. The eye angiomas often develop in childhood. Others, including tumours found in the cerebellum, spinal cord or adrenal glands (Haemangioblastomas and Pheochromocytomas) can develop from late childhood onwards. The kidney tumours are usually the last things that develop, from the mid-twenties onwards.  Most VHL related tumours are benign.

Summary

As for my own experience of syndromes, I did once show symptoms of the most common NET syndrome (currently known as Carcinoid syndrome) where the key symptoms include diarrhoea, flushing of the skin (particularly the face), stomach cramping, heart problems such as palpitations, and wheezing.  You can see why those symptoms are frequently and easily confused with other conditions. If you have a similar diagnosis, you may benefit from looking at something known as The 5 E’s which is a useful list of things to be wary of.

I did have issues for a year or two in 2010 leading up to diagnosis and until my treatment was underway.  I was experiencing flushing and infrequent bouts of diarrhea but I totally ignored it (hear me talk about this). However, it ended up being instrumental in my diagnosis albeit some good luck was involved in getting to that point.  My twist of fate which involved a low hemoglobin score led me to a scan and ‘bingo’.  I had a ‘gastrointestinal blip’ some 18 months previously but that proved colonoscopy negative.  Despite my distant and metastatic tumour disposition and seemingly late diagnosis, I’m current non-syndromic due to “early” intervention and good treatment.  However, my ongoing treatment continues to play its part.

For many, the vague and routine symptoms generated by a syndrome contribute to the fact that NET Cancer is frequently misdiagnosed with some people suffering from the side effects for many years before a correct diagnosis is made.

There are many other less known syndromes that appear to be directly or indirectly connected with Neuroendocrine Tumours and I may update this post if I discover they are more prevalent than I think.  Please let me know if you’ve been told you have a NET related syndrome not listed.

Neuroendocrine Cancer – shh! Can you hear it? 

Thanks for reading

Ronny

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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

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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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Chocolate – the NET effect


fotolia_5369986_XS

I’ve always had a ‘sweet tooth’ and the softer the sweet the better – toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts and macaroon are all on my list of favourites.  In terms of desserts, I love those too – ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn’t complete without a biscuit (or three….). Don’t get me wrong, I’m not stuffing my face with sweet stuff 24/7, however I do need my sugar ‘fix’ now and then. I’m not a large person, I’m small ‘framed’ and although I was starting to look a bit ‘chubby’ early 2010, my Neuroendocrine Cancer diagnosis and subsequent treatment took care of that.

Coping with cancer is hard and it can lead to certain lifestyle changes including diet. This is also hard! Coping with the amount of available and contradictory dietary information on cancer is challenging too!  There is also significant ‘chatter’ suggesting that sugar ‘fuels’ cancer cells.  Apparently there are more than one million websites capitalising on this fear but virtually none offering any science.  However, if you check reputable websites such as the main US and UK research agencies, you will see this link has not been scientifically proven and this claim is debunked on many reputable cancer websites in their lists of ‘cancer myths’.  Of course the situation is not helped by the wide circulation of these myths by the misinformed via social media – we’ve all seen these haven’t we?

I’m not saying that sugar is a good thing but like many other facets of modern lifestyle, too much of a good thing won’t be good for long.  The last thing any cancer patient wants is (yet) another debilitating or long-term chronic illness, something always in the back of my mind. I now watch what I eat although I try to keep a balance so that I can still enjoy some of my favourite foods – my food diary helps identify the ‘culprits’.  I had actually cut down on sugar before I was diagnosed, it’s addictive so it can be hard work!

So are sweets dangerous for a Neuroendocrine cancer patient? Like a lot of other things, in moderation they probably don’t do any harm but that’s based on my own experience. The amount of specific amines in foods can be a useful guide to how much you eat.  Please note not everyone has bad reactions and foods high in these amines do not fuel tumour growth!  Moreover, the only time you should really avoid these high amine foods is just prior to a 5HIAA test (unless you have a consistently bad reaction to them of course).  Chocolate is said to be “moderately high” in tyramine, dopamine, xanthenes and theobromine.  One size doesn’t fit all though and NET nutrition guides emphasise the amount will often matter more than the food itself. I will therefore continue to eat small amounts 😃 If you want to learn more about NET nutrition – read here.

I think sweeet stuff is more dangerous for those at risk of diabetes more than any potential syndrome effect.  Read more about Diabetes and NETs by clicking here.

Let me complete the blog with a recent personal incident regarding chocolate indicating there is a dark side to it (no pun intended!).  I cracked a tooth whilst eating a piece of chocolate in 2014.  I never found the broken piece so I assumed I’d swallowed it.  I kept a lookout for a few days but no sign and I presumed I just missed it.  However, 32 days later, my regular surveillance CT scan revealed an “ingested foreign body or ‘entrolith’ within a loop of the small bowel”.  A bit of a worry given the amount of surgery I’ve had.  My Consultant said it would eventually work its way out of the body naturally and it did.  Phew!

Apologies to anyone unable to eat any chocolate without an adverse reaction 😡

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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Most Popular Posts

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

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Living with an incurable cancer – does mind over matter help?

mindmatter1

When I started blogging in 2014, it was relatively easy – all I needed to do was to talk about my experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian’s Wall for a local Charity.  The blog was only ever intended to be a temporary supporting tool for the walk and its build up; but I was persuaded by good reviews and viewing numbers to keep it going.  That suddenly made it more difficult!

In my early blogs, there were several ‘no go areas’ which were either too complex or potentially controversial.  I didn’t really have much time to think them through properly at that point in time. However, I’ve since dabbled in some of these areas to test the waters.   I’m not a healthcare professional of any sort so I can only talk about my own experiences and how I made improvements to my own issues. Since then;

Clearly there are many other issues involved including but not limited to social support, comorbidities, pain control.

It’s no secret that a cancer patient’s problems can at times go beyond the physical, i.e. the mind can also be affected. My research indicates that any cancer patient is at risk of succumbing to depression and anxiety with one study indicating it could be as high as 40% with an equal split between clinical depression and subclinical depression. The latter is an interesting condition as it’s not as severe as the former but can last much longer.  I suspect if I dug deeper, I would find there are other factors at play including (but not limited to) geography, socio-economic and gender. It’s also worth noting that these issues can also affect someone who is living with, or caring for, a cancer patient.

It would appear that studies into depression and anxiety in cancer patients have been a challenge because symptoms occur on a broad spectrum ranging from sadness to major affective disorders and because mood change is often difficult to evaluate when a patient is worried about death, is receiving cancer treatments, is fatigued or is experiencing pain. Living with cancer or depression can be hard (I can vouch for the former) – battling both together must be more difficult.  According to Cancer Research UK (one of the biggest and respected names in Cancer), depression and anxiety issues are an important but largely under-recognised problem for people with cancer. Read more by clicking here.  And if you listed the unmet needs for NETs, psychological problems would certainly be on the list.

Many people still see a cancer diagnosis as a death sentence but improvements in medical science has meant that fewer people now die of cancer (although certain cancers are still struggling, e.g. Pancreatic).  If fewer people are dying of cancer, it clearly indicates that more people are now either living with their cancer or going into remission?  The latter is indeed very good news and will have impacted the survival figures greatly.

However, some incurable cancers can also have a good prognosis or outlook despite their ability to put a dent in Quality of Life (QoL).  These cancers can provide physical and mental challenges to patients who are living with both the side effects of the cancer and the (lifelong) treatment.  One such type is Neuroendocrine Cancer, sometimes known as ‘the silent cancer or ‘cancer in slow motion‘ in respect the well differentiated versions.  In prognostic terms, there are worse cancers out there, even patients with metastatic disease can have good prognostic outcomes and live fairly normal lives with the right treatment.  But each person is different and there can sometimes be a varying cost in terms of quality of life and risk of patients succumbing to depression and anxiety issues.  Many people not only live with Cancer but they also live with the consequences of Cancer.

As a Neuroendocrine Cancer patient, I have at times felt like my mind wasn’t coping very well despite a healthy and happy outlook – not forgetting that I look so well 🙂  I’m good at bottling things up so it’s easy for me to put on a façade. However, I’ve always managed to give myself a proverbial ‘kick up the backside’ if I feel a drop in my levels of focus and determination. It’s too easy to be constantly fearful and blame every single ache and pain on my cancer (because most of the time it turns out not to be) –  this just increases the fear. I’m generally a POKER FACE type of guy and some might say that is dangerous! However, I’m not complacent nor am I in any form of denial.  One of the key reasons why I study my disease in some detail and work with my medical team prompting them as my own advocate where I think there is a strong connection, is so that I don’t become complacent whilst at the same time I don’t automatically assume any aches and pains are caused by the cancer.  NET Cancer needs an element of pragmatism now and then!  I also think exercise and nutrition can help body and mind – thus why I listed those factors above.

Does mind over matter help? I don’t believe a positive attitude helps cure any condition but I believe it can be helpful for anyone with cancer including those living with incurable diseases such as Neuroendocrine Cancer.

I’ll have Neuroendocrine Cancer forever – I cannot change that, so I’ll just have to deal with it. Quality of life is therefore important – I need to work to maintain and improve where possible.

If you think your psychological issues are unmanageable, I strongly encourage you to talk with your doctor or a counsellor.  In fact, you may appreciate this excellent video from NET Patient Foundation presented by Kym Winter helpful. She is a qualified Psychotherapist and Counsellor – click here.

I also liked this video by Dr Michael Burke, a Psychiatric Oncologist – click here

You may also enjoy my article “8 tips for conquering fear” which is written by a patient for patients and also features both the above videos.

8 tips for conquering fear

Thanks for listening

Ronny

I’m also active on Facebook.  Like my page for even more news. Please also support my other site – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

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Check out my Podcast (click and press play)

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

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