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!

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!