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 World NET 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! Edit: As at 15th Oct 2020, now on butt dart number 129.
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. This issues seems to have gone now (edit 2020)
– 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! 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. This issue seems to have gone now (edit 2020).
– 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. The final longer term report can be found in this article.
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 (sorry not sorry). 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!
Edit 2020. I’ve now had much more than another 4 years and long may it continue.