4 years ago today, Chris and I completed the 84-mile route of 2000 year old World Heritage site of ‘Hadrian’s Wall’ in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more.
A few months before this trek, I had come to a crossroads and I was unsure which direction to go. That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the main treatments for my metastatic Neuroendocrine Cancer and it was still a delicate period as I waited for signs of some stability.
I was getting into some old habits at work (e.g. working long hours) and in hindsight, I can now see that was impacting on my search for normality and stability. However, at the time, it conveniently aided the image of invincibility which was my way of saying “get lost Cancer”. I was reaching out for something I could call normal and for a long time before diagnosis, me working hard was normal! I had always loved a bit of stress but not if it was going to help Neuroendocrine Cancer kill me!
And then boom! – a thyroid lesion is reported. I suddenly realised I had too many balls in the air and I was no longer the expert juggler I was previously. The mask on my poker face was slipping and something needed to change. The thyroid lesion (more on that later) was not the turning point but it was definitely one of a number of signs that I was not invincible, my situation was delicate and I needed to be more proactive on finding the normal I was so desperately seeking. Work was no longer the route I needed to take. To cut a long story short, I decided to retire early BUT in an effort to maintain personal challenges, I set myself some fitness targets which lead to the Hadrian’s Wall walk over 6 days. I actually set up this blog site simply to document the walk and that was the only reason at the time.
Four years on, Lanreotide injection 100 is coming up shortly, my thyroid lesionis not causing any issues although I have recently been prescribed medication to support my borderline hypothyroidism, I have much less stress in my life and I’m fitter and leaner than I was at diagnosis. I found a new normal and I liked it! Maintaining and improving it is a challenge though.
My Hadrian’s Wall blog was an acorn which has now grown into a nice little Oak tree and I’m truly thankful to everyone for their fantastic support. There’s still plenty tree left to grow
In March 2018, the blog passed half a million views.
Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, a couple of years ago, I came across a list of ‘E’ words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. There are many variations of this list but this is my take! I suspect some of this also applies to other types of NETs and other NET Syndromes.
On analysis of this list, it struck me that I was aware of the issues and their potential effects and I’m certain there is science to substantiate the content. These E’s are apparently the most common ‘triggers’ for Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks and I always feel great after. I had dental treatment without any precautions before I was aware of the risks …….. nothing happened! Before I was treated, stressful meetings at work would make me flush though! As for eating – well that’s another couple of blog’s worth! (see the Diarrhea Jigsaw and Nutrition Blog 4 – Food for Thought)
The 5 Es are, however, very important, as a severe attack of Carcinoid Syndrome symptoms could be debilitating and life-threatening and I’m fairly certain the list was compiled with this in mind. Some people are more affected by Carcinoid Syndrome and this is not necessarily related to the extent or aggressiveness of their disease. Some people just react differently. An extremely severe attack of Carcinoid Syndrome can also be known as a ‘Carcinoid Crisis’ which is very dangerous on the operating table due to the effects of anaesthetics – thus why many NET Cancer patients may be infused with somatostatin analogues (usually Octreotide) prior to and during surgery or other medical procedures. There’s a lot of excitement generated around the term ‘Carcinoid Crisis’but it is generally uncommon.
I’m not saying the 5Es should be ignored but NET Cancer is complex and most things need to be read in the correct context. What works for some may not work for others. There can also be confusion surrounding the source of symptoms, i.e. are they syndrome or something else? This is why I believe NET Cancer patients need to answer some key questions when considering the risks associated with the 5 E’s:
Are you currently syndromic? If you are, then the 5 ‘E’ list is probably very good advice but interpreting the advice in the correct context remains important.
Are your syndrome related biochemistry results normal (e.g. 5HIAA)? Normal readings (in range) tend to mean the syndrome is under control and many people who were diagnosed with a syndrome may actually be non-syndromic following treatment.
Have you had treatment or are having treatment likely to produce side effects which might be confused with Carcinoid syndrome? For example, surgery can be the long term cause of diarrhea and other issues. Despite the role of somatostatin analogues, these could also be the root cause of certain reactions.
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
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.
I recently posted an ‘Onc Live’ video series about Neuroendocrine Tumour (NET) treatments and the final episode talked about combination treatments i.e. where more than one treatment is administered simultaneously. An interesting and exciting area to watch for the treatment of NET patients.
Thought you’d be interested in a potential new treatment being developed in Australia. The use of PRRT and chemo (in particular CAPTEM) or ‘PRCRT’. The attached video is a presentation by Dr Michael Hofman who I see regularly on twitter posting some very interesting stuff. He’s a great advocate for NET patients. The video will explain in some detail how the treatment is thought to work together. Additionally, it also provides excellent PRRT information. Dr Hofman has some really interesting things to say. 20 minutes – definitely recommended watching! CLICK HERE
I’d been planning to provide you with this post for a few weeks but was prompted to release early today by an announcement from Unicorn Foundation confirming recruiting is open for a trial named ‘CONTROLNETS’ involving PRRT and CAPTEM. The details of the trial can be read here: CLICK HERE
Thanks for reading
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Firstly as I have an international audience, I thought I’d introduce what might not be a well-known British trait – the ‘stiff upper lip’. For the uninitiated, I’m defining this as “One who displays fortitude in the face of adversity and within that, exercises great self-restraint in the expression of emotion, rarely asks for help and just suffers in silence.” That perfectly explains the accompanying graphic! That definition also covers the two key themes above, talking about it and managing the illness.
There appears to be a lessening of this way of thinking in the past 30 or so years. However, I think this trait remains prevalent, particularly (but not exclusively) in the more senior citizens. I’m not convinced that a stiff upper lip is something confined to the UK as I learn how some of my overseas friends cope. I also think it might be more prevalent in men, you just need to look at the gender split on cancer forums to see that.
As someone with a cancer blog which has fielded a quarter of a million views, I can hardly be accused of keeping quiet about my cancer.However, that is a relatively new thing since diagnosis in 2010. Following that diagnosis, I kept my cancer ‘secret’ to close family, a few selected friends and only those at work who actually needed to know for administrative purposes. As I said in my blog “Sorry I’m out of service”, …..the image of ‘invincibility’ was important to me at that time and I thought I could deal with it and still have the same ‘look and feel’ in my life as I had before. Someone suggested that I should go home one day and my response was “the only way I’m leaving this building early is in an ambulance. Foolish? Absolutely (but in hindsight of course!). It eventually became impossible to find the same ‘look and feel’ and it took me 3 years to come out of my cancer closet.
I suppose people have such varying personal circumstances and different characters will deal with managing their illness in different ways. Some rely totally on their medical team (I get this but I wouldn’t rely 100% on this strategy). Some rely on support groups. For example, take patient forums where there is a broad range of patient engagement types. Some people talk a lot about their issues, every cough, sneeze and ache is a worry. I suspect they are simply looking for support or they might be frightened and worried about a particular problem. Perhaps some are more reserved or they already have enough support elsewhere. Maybe they simply get some support by reading about the experiences of others with the knowledge they have that safety net if they felt they ever needed to ask a question. Of course, when you compare the ‘guesstimate’ of NET patients vs online patient forum numbers, the vast majority of NET patients are not on a forum. Interestingly, I have many people following my blog on Facebook, twitter and WordPress, who are not on any forum – in some ways, this might be a good option for some. That said, I’d like to think my own groupoffers a good service.
I find myself managing my illness on a day to day basis. I like to assess any issues carefully to avoid wasting other people’s time and generating unnecessary alarm and drama. But do I have a stiff upper lip? Yes – I think I’ve always been like that and the ‘going home in an ambulance’ statement above confirms that. However, I suspect I’m now more of a realist i.e. I’m aware of the signs, aware of the risks and I know there’s a possibility of me becoming ill in a short space of time. I need to avoid that. Sometimes I have a ‘battle’ with my ‘stiff upper lip’ but it’s normally a question of judgement and risk assessment. Key questions I ask myself are: ‘Is what I’m experiencing normal’ and if so ‘it is dangerous’. If it’s not normal, ‘is it connected to NETs’ or ‘is it a regular illness’.
I remain alert but I won’t normally suffer in silence for too long. Please don’t either.
Most people with an incurable Cancer will go through both good and bad periods. I quite liked a quote by a fellow patient who described that as the ‘ebb and flow’ of living with cancer and said the flow would always return at some point. I also liked a quote from a fellow blogger whose blog catchphrase is “Having a bad day shouldn’t mean having a bad life”.
When I wrote my blog “Living with Neuroendocrine Cancer – it takes guts“, that wasn’t me being one of those trendy bloggers saying the sort of things people want to hear. Nor was it an attempt to invoke some sort of ‘pity party’. Neither of those things are my style. Despite the metaphoric angle to the post title, it really does take guts to live with a life threatening condition.
Despite my positive sounding blogs and my generally focused and determined nature, I’ve had bad periods where I felt I wasn’t coping to well living with cancer. I’ve lost count of the number of times I’d planned to do something and then put if off for various reasons. It’s really easy to become almost permanently inactive and lethargic and that is not a good outcome.
‘It’s the cancer’ – this can sometimes seem like the perfect reason to say ‘I can’t. It’s difficult but I find it helps if you have someone providing motivation, a partner, a friend or just by reading an inspiring post. I’m perked up when I read stories about patients trying to change or improve their outcome, even simple day-to-day things.
Sometimes there is a fine line between ‘poker face’ and ‘cancer card’.
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