The acronym ‘NET‘ (NeuroEndocrine Tumour) can be advantageous to NET Cancer advocates and organisations because it occasionally attracts readership from outside the Cancer community when links are accidentally found by ‘surfers’. NET just also happens to be a common truncation of the word ‘Internet’ or ‘Network’. The vast majority will realise the irrelevance (to them) and move on but 1 or 2 might just hang around and take a look. Bingo – we have spread a little bit of awareness!
These unintended awareness opportunities are not confined to this search phrase though. According to my blog statistics, the most common search phrases which leads to my blog is “No Fear” – the title of one of two blogs I wrote on so-called ‘scanxiety’. However, I suspect many surfers, base jumpers, bungee jumpers, climbers, extreme sport types and those looking for this famous clothing brand, have now learned something about Neuroendocrine Cancer 🙂 Interestingly, there’s also been a search using the phrase “humor fat german nurse syringe to butt” which found my blog site. I wonder what that was about 🙂
Conversely, NET Cancer advocates and patients may come across the term ‘NET’ thinking this is something associated with Neuroendocrine Tumours only to find it’s something about ‘technology’ – I know some NET patients who would be equally happy in both areas! Had he been alive, Steve Jobs (the most famous of all NET patients) would have been happy with this and declared his condition as iNET. However, the diversion during searches is more likely to be in our direction given the extreme popularity of all things ‘NET’ in the IT world vs. the niche and esoteric subject of Neuroendocrine Tumours (NET).
This diversion happened to me last week when I came across an article in the UK news where the term ‘NET’ was used in conjunction with a part of the anatomy, so it immediately caught my eye. It was a term I hadn’t heard before so thought it might be some new research worth ‘tweeting’ or for further analysis as a potential blog post. The article was entitled “Do you suffer from NET BRAIN?”. However, upon reading, I found it was news of research by a group of psychologists who claimed ‘tech’ (meaning IT/mobiles/tablets etc) makes one in 10 people into “anti-social and distracted narcissists” and that it was now a recognised medical disorder called NET BRAIN.
I laughed out loud (LOL), in fact, I also LMAO and was ROFL. Perhaps this was a reaction to disguise the feeling that I might already be suffering from this condition although I’m content it has nothing to do with my NET (are you confused yet?). Apparently the main symptoms of NET Brain are ‘poor attention span’ (PAS) and a ‘fear of missing out’ (FOMO) and personally I would also add the use of #dafthashtags and extreme use of three and four letter abbreviations (TLA and FLAS) into the mix.
What can I say … I don’t think I have PAS but I confess to sneakily checking twitter/emails/Facebook posts and my blog stats on a (shall we say) ‘frequent’ basis. I am, however, far too old for FOMO – I quite enjoy my 8 hours sleep a night (part of my new normal) and normally have no issues ‘dropping off’. The article went on to say ‘people who are classed as passionate and uninhibited are three times more likely to become addicted to technology than others’. I’m passionate about stuff but I’m not that uninhibited (#tooconservative #annoyinglyanalytical). IT and ‘social media’ (tech) are essential for my mission to spread awareness of NET Cancer – that rules out any narcissist tendencies. However, it does rule in what might be perceived as an addiction, but in reality I’m just a man on a mission.
One thing I did draw out of the article is that ‘NET Brain’ is definitely more prevalent and has a much higher incidence rate than NET Cancer. However, if you actually suffer from FOMO, then you had better sign up for my blog and Facebook immediately. I wouldn’t want you to miss anything 🙂
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At the end of last year, I was feeling pretty good celebrating 4 years since my first ‘big’ surgery in 2010. It prompted me to write a blog – Surgery – the gift that keeps on giving. In that blog I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time……….and of course it remains so today. Other than some detail of the surgery, I didn’t get too technical, I just wanted to generate a thankful and festive mood. However, a recent private message from a subscriber prompted me to study the current benefits of surgery for Neuroendocrine Tumours (NETs) in more detail just to ensure my understanding was still in line with best practice.
It’s very well known that NETs can present a major challenge to physicians in their recognition and treatment requirements. Midgut NETs (carcinoid) are the most common cause of carcinoid syndrome, requiring surgery for primary and mesenteric tumours to minimise the risk for abdominal complications and future growth; but also for removal of liver metastases to palliate hormonal symptoms. Among pancreatic neuroendocrine tumours (pNETs), insulinoma and gastrinoma often cause severe symptoms of hormone excess despite their inconspicuous size, but they can be successfully removed with improved pre- and intraoperative localisation. Other tumours–glucagonoma, VIPoma, and non-functioning endocrine pancreatic tumours–are often large or metastasising, but generally require surgical debulking to alleviate hormonal symptoms and have favourable survival.
I searched reputable websites and European and North American NET treatment guidelines to find that surgical treatment of these tumours still appears to be increasingly important and not just for curative treatment (where this is possible) but also for symptom palliation and survival. Although more treatment modalities are available than ever before (e.g. radiotherapy, liver embolisation, liver ablation, somatostatin analogues and other new drugs and chemo combinations), surgery still appears to be the mainstay treatment to be offered when it is appropriate.
I had an amazing surgeon with an impressive CV in Neuroendocrine disease. He believes in early and aggressive surgery (within normal guidelines) and always in conjunction with other treatment modalities. I found a video of one of his lectures which you may find useful. Another surgeon who talks with knowledge and passion is Dr Pommier and one of his videos can be viewed here. I’m sure there are many others. They are different characters but they both seem to believe in getting as much tumour out as early as possible and also emphasise that sometimes it can be too risky so the focus moves to other treatment. Both presentations provide statistical evidence that debulking/cytoreductive surgery offers a better outlook even for those with advanced neuroendocrine disease.
I think I have a soft spot for surgeons probably because they are mostly straight talkers, no holds barred. They also seem to love their job despite it being particularly ‘gory’. On the subject of ‘gory’, I recently came across another surgical video which I found totally fascinating. This one contains amazing footage of real surgery and if you are like me, you will find this very educational. It’s also quite recent (2014) so perhaps offers more up to date techniques. It’s also a very well structured presentation. Some of you might have seen it before and some of you could even have even been at the presentation! If you don’t have time, skip forward to approximately ’19 minutes’ and watch them take out large and small tumours of the liver using a technique called enucleation! (Click here to watch).
Hope you enjoyed this session as much as I enjoyed writing it!
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Last year I wrote a series of blogs on the ‘coping’ side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I’ve had, I sometimes have a little laugh even although I wasn’t laughing at the time! My favourite ‘treatment laugh’ is the ‘suppository story’ which occurred in hospital shortly after my first major surgery – it wasn’t funny at the time but I smile when I think back to it. On a similar subject, I had a colonoscopy around 21 months prior to my actual NET Cancer diagnosis. Like the guy in the story below, I don’t remember a thing. However, what I do vividly remember (and clearly so did he!), is that the preparation for the procedure can be a ‘challenge’. I can vouch for that.
I came across this real but anonymised journal which you may enjoy and hopefully have a little laugh too. I suspect those who have had a colonoscopy (or two) will enjoy it more than others! I suddenly realised colonoscopies can be funny on the basis I laughed out loud reading this. The quotes from doctors at the end are hilarious!
I called my friend Axxx, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office, Axxx showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis. Then Axxx explained the colonoscopy procedure to me in a thorough, reassuring and patient manner. I nodded thoughtfully, but I didn’t really hear anything he said, because my brain was shrieking, ‘HE’S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!’
I left Axxx’s office with some written instructions, and a prescription for a product called ‘MoviPrep,’ which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America’s enemies.
I spent the next several days productively sitting around being nervous.
Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn’t eat any solid food that day; all I had was chicken broth, which is basically water, only with less flavor. Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons). Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes – and here I am being kind – like a mixture of goat spit and urinal cleanser, with just a hint of lemon.
The instructions for MoviPrep, clearly written by somebody with a great sense of humor, state that after you drink it, ‘a loose, watery bowel movement may result.’ This is kind of like saying that after you jump off your roof, you may experience contact with the ground. MoviPrep is a nuclear laxative. I don’t want to be too graphic, here, but, have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.
After an action-packed evening, I finally got to sleep. The next morning my wife drove me to the clinic. I was very nervous. Not only was I worried about the procedure, but I had been experiencing occasional return bouts of MoviPrep spurtage. I was thinking, ‘What if I spurt on Axxx?’ How do you apologize to a friend for something like that? Flowers would not be enough.
At the clinic I had to sign many forms acknowledging that I understood and totally agreed with whatever the heck the forms said. Then they led me to a room full of other colonoscopy people, where I went inside a little curtained space and took off my clothes and put on one of those hospital garments designed by sadist perverts, the kind that, when you put it on, makes you feel even more naked than when you are actually naked.
Then a nurse named Exxxx put a little needle in a vein in my left hand. Ordinarily I would have fainted, but Exxxx was very good, and I was already lying down. Exxxx also told me that some people put vodka in their MoviPrep. At first I was ticked off that I hadn’t thought of this, but then I pondered what would happen if you got yourself too tipsy to make it to the bathroom, so you were staggering around in full Fire Hose Mode. You would have no choice but to burn your house down. When everything was ready, Exxxx wheeled me into the procedure room, where Axxxx was waiting with a nurse and an anesthesiologist. I did not see the 17,000-foot tube, but I knew Axxx had it hidden around there somewhere. I was seriously nervous at this point. Axxxx had me roll over on my left side, and the anesthesiologist began hooking something up to the needle in my hand. There was music playing in the room, and I realized that the song was ‘Dancing Queen’ by ABBA. I remarked to Axxx that, of all the songs that could be playing during this particular procedure, ‘Dancing Queen’ had to be the least appropriate. ‘You want me to turn it up?’ said Axxx, from somewhere behind me. ‘Ha ha,’ I said. And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like……………
I have no idea. Really. I slept through it. One moment, ABBA was yelling ‘Dancing Queen, feel the beat of the tambourine,’ and the next moment, I was back in the other room, waking up in a very mellow mood. Axxx was looking down at me and asking me how I felt. I felt excellent. I felt even more excellent when Axxx told me that It was all over, and that my colon had passed with flying colors. I have never been prouder of an internal organ.
On the subject of Colonoscopies……..
Colonoscopies are no joke, but these comments during the exam were quite humorous!!!!! A physician claimed that the following are actual comments made by his patients (predominately male) while he was performing their colonoscopies:
1. ‘Take it easy, Doc. You’re boldly going where no man has gone before!’
2. ‘Find Amelia Earhart yet?’
3. ‘Can you hear me NOW?’
4. ‘Are we there yet? Are we there yet? Are we there yet?’
5. ‘You know, in Arkansas, we’re now legally married.’
6. ‘Any sign of the trapped miners, Chief?’
7. ‘You put your left hand in, you take your left hand out…’
8. ‘Hey! Now I know how a Muppet feels!’
9. ‘If your hand doesn’t fit, you must quit!’
10. ‘Hey Doc, let me know if you find my dignity.’
11. ‘You used to be an executive at Enron, didn’t you?’
And the best one of all:
12. ‘Could you write a note for my wife saying that my head is not up there’
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Interesting piece in the news today and there’s an amazing story behind it. The “Lung Cancer Breathalyser” is not a new technology but following the death of his wife from advanced colon cancer, inventor Billy Boyle has produced something good enough to have been accepted on a trial basis by the NHS. If successful, it has the potential to save thousands of lives. Lung Cancer is a big killer and the survival rate at Stage 4 is around 5%. Let’s hope this invention works.
When I was reading the article, I immediately recognised his wife as a blogger I was following and who died on Christmas day after fighting advanced colon cancer for 2 years. Her final and penultimate blogs are very inspiring and worth reading. Her final post was written by her mother (excuse the swear word on the blog graphic) and the penultimate was published in the Times and went fairly viral on twitter. Her blog site is here (click)
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The UK general election steps up a gear this month and social media is playing a huge part in the debate leading up to 7 May 2015. In the USA, the different parties are busily working on their candidates ready for 2016. It appears that politicians worldwide, are keen to exploit all areas of communication to eke out votes from the young and old who now use social media on a scale which makes 4 or 5 years ago look prehistoric. In 2012, Barack Obama’s ‘four more years’ tweet was the biggest retweeted post ever up to that point after he thanked his 22 million followers. He took the top spot from Justin Bieber but was then overtaken last year by Ellen De Generes’s famous mass celebrity selfie.
Four years ago, I thought Twitter was only for famous people, I was a low to medium user of Facebook for the odd joke and family photo and I thought blogs were only for journalists. However, I had other things going on and wasn’t worried about such ‘trivia’. Four years ago, I commenced my post-surgical and long-term treatment for metastatic Neuroendocrine Cancer. You can read more about my journey here – my diagnosis and the intervening period leading up to my first big surgery – I woke up on NET Cancer Day.
When I left the hospital, I knew I would be starting long term monthly ‘somatostatin analogue’ treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed 90 mg Lanreotide (Somatuline Autogel, known in the USA as Somatuline Depot). Although I didn’t relish the thought of any injection in the ‘rear end’ every 28 days for the rest of my life, I admit to being slightly relieved. I had been reading about patient experiences with the alternative, mainly the needle length and the occasional problems mixing the drug prior to injection. Although Lanreotide has a similar gauge (thickness), the needle is a good bit shorter and is deep subcutaneous rather than Octreotide LAR’s intramuscular (IM) route. No mixing is required as Lanreotide comes prefilled. I’ve just chalked up “butt dart” number 53 last week!
If you are interested in the science, please be aware that a somatostatin analogue is a synthetic (manufactured) version of a naturally occurring hormone which inhibits the peptides and amines that can be dangerously hypersecreted by certain neuroendocrine tumours. If you are after a more technical explanation of this process, you should check out my blog Neuroendocrine Tumours – not an exact science! – inside you will find a link to a fantastic paper by Dr Eugene Woltering, one of the world’s top NET Cancer experts.
Whilst I was waiting for my first major ‘debulking’ surgery and after checks to confirm if my tumours were ‘avid’ to somatostatin analogues, I was prescribed daily Octreotide (self injecting) and this did eventually lessen the main effect of my ‘carcinoid syndrome’, facial flushing. It wasn’t until after this surgery that the facial flushing was dramatically reduced although I do remember a minor occurrence within a month. I started Lanreotide in Jan 2011 and I haven’t had a facial flush since. However, it’s worth adding that my Chromogranin A (CgA) blood test (correlated to tumour mass) did not return to normal until after a liver resection 3 months later. My 5HIAA urine test results (correlated to serotonin levels) returned to normal earlier indicating the Lanreotide was doing its job!
Octreotide/Lanreotide side effects are to be expected and most people seem to have different and/or greater or lesser effects than others. The daily Octreotide did not bother me too much other than some discolouring of the stomach at the injection sites (i.e. black and blue!) ….I’m more observant nowadays, so it’s possible I may not have recorded this properly. The monthly Lanreotide has caused only minor issues and the ones I’ve encountered are already well documented side effects. I always try to be careful not to immediately assign blame for certain side effects which I’m fairly confident are as a result of my new ‘plumbing’ rather than the Lanreotide. The main adverse side effects I’m sure can be attributed to Lanreotide are:
– itching but only on the legs below the knees centred on the ankles – and nearly always the right leg. I have no idea why but even after my injection last week, this still happened! It is not as intense as 2011 and only lasts for about a week after the injection. Occasionally, the injection site will itch but only for a day or two. I have a tub of emollient cream (almond oil) on standby which seems to calm it down.
– minor pain at the injection site but this only lasts for an hour or two and I believe this to be associated with the administration of the injection. My experience is that a lack of training or confidence hurts more! I always instruct the injector to stick the needle in fast and release the contents slow (min 20 seconds) and no pinching the skin! Watch a useful injection video here. You can self inject Lanreotide (upper thigh area) but I’m not ready for that yet!
– small lumps form at the injection site which is alternating superior external quadrant of the buttocks. They are more conspicuous if the injection is done slightly too high which was my initial experience and they took months to fade. I opted to stand up for the first two injections and I attribute this decision for a slightly too high injection site. I now lie down which is actually recommended for the smaller and thinner patient.
– fatigue normally within 24-48 hours of the injection. Not even sure it can be classed as proper fatigue but it’s a ‘you need to sit down and fall asleep’ feeling! It normally only lasts for 1 day before the normal energy levels return.
– although the side effects of small intestinal surgery and gallbladder removal can cause malabsorption issues, in particular the inability to digest fat properly; somatostatin analogues can exacerbate steatorrhea as they inhibit the production of digestive enzymes which aid fat digestion. I notice a marked and short term increase in this problem normally within 72 hours of the injection.
Four years ago, there was some ‘talk’ that somatostatin analogues were also able to stunt or reverse the growth of certain neuroendocrine tumours. Has this been the case for me? Possibly. I’ve had regular CT scans every 3-6 months and since two bouts of major surgery in 2010/2011, I’ve also had 2 x Octreoscans (the most recent incorporating a SPECT). I did once spend a day analysing 4 years of scan results looking for variations in size and concluded that there was a stable trend and potentially a fading of one or two of my largest liver tumours. I was reminded these two types of scans were not really precise enough to detect small millimetre increases or decreases and as there were other factors at play, there was little commitment to make this declaration. However, I did note in the summary of the CLARINET study, Lanreotide was associated with prolonged progression-free survival among patients with advanced, grade 1 or 2 (Ki-67 <10%) enteropancreatic, somatostatin receptor–positive neuroendocrine tumours with prior stable disease, irrespective of the hepatic tumour volume. In terms of its anti-proliferative effects, an interim report from the CLARINET extension study suggested longer-term Lanreotide treatment is well tolerated with ‘anti-tumour’ effects in patients with progressive disease.
I have my ups and downs and I do feel quite well most of the time. Most people tell me I look quite well too! Over the last 4 years I’ve made some fairly significant adjustments to cope with my condition and maintain a reasonable quality of life – my monthly injection of Lanreotide is no doubt playing a big part.
So ‘four more years’ of Lanreotide gets my vote and I’d like to tell the world! I just wish I had 22 million twitter followers to help with my message 🙂 A retweet by Ellen De Generes, Barack Obama or Justin Bieber would help though!
(Check out my blog “5 years of Lanreotide“)
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