When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly 'somatostatin analogue' treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed Lanreotide (known in the UK as Somatuline Autogel).

Somatostatin Analogues (Octreotide/Lanreotide) are mainstay treatments for many Neuroendocrine Cancer patients and their introduction is a very significant factor in the improvement of both prognostic outcomes and quality of life.  Both drugs are designed to control Carcinoid Syndrome (but can be used selectively in other NET syndromes) and both have anti-tumour effects.

Another butt dart Ronny?

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 with his choice.  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 chalked up "butt dart" number 66 last week!

If you're 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 'The Basic Science of Carcinoid Tumours' - inside you will also 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 (octreotide scan), 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.  I commenced Lanreotide on 9 Dec 2010 and I haven't had a facial flush since.  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 (mainly correlated to serotonin levels) returned to normal prior to liver surgery indicating the Lanreotide was doing its job! Somatostatin Analogue 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 experience properly.

If you read the UK patient leaflet which comes with each injection, you can see a list of potential side effects as long as your arm.  Neuroendocrine Cancer comes with many signs, syndromes, symptoms and suspicions, so I always advise caution and some analysis when assigning reasons for problems encountered.  I don't know precisely why, but I'm always very sceptical about the criteria used to compile the list of side effects for any medicine.  Anyway......the main adverse side effects that I have experienced and think I can attribute to Lanreotide are:

  • itching but only on the legs below the knees centred on the ankles - and nearly always the right leg.  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.  (note - a little bit of me thinks there could be a connection with vitamin/mineral deficiency).
  • 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 stretch the skin at the injection site, no pinching!  Stick the needle in fast and release the contents slow.  In any case, there will be some resistance when pressing the plunger as the drug mix is viscous.  The recommended time to fully plunge is a minimum of 20 seconds.  Watch a useful injection video here. In my own experience, the best and least painful injections are those done by trained personnel who are confident.  You can also self inject Lanreotide (upper thigh area) but I'm not ready for that yet!  Close family members can be trained to inject but again, I'm not ready for that and neither is Chris!
  • small lumps form at the injection site which is alternating superior external quadrant of the each buttock.  I find that 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.  I have not seen a lump for some time indicating location might be a cause.
  • fatigue normally within 24-48 hours of the injection but this is not consistent.  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.
  • malabsorption. although the side effects of gastro-intestinal (GI) surgery and gallbladder removal can cause malabsorption issues leading to steatorrhea (basically the inability to digest fat properly); somatostatin analogues can cause or exacerbate existing steatorrhea, as they inhibit the production of digestive/pancreatic enzymes which aid fat digestion.  I notice a marked but short-term increase in this problem normally within 48-72 hours of the injection.

Five 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 3 x Octreoscans over the same period.  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 - lucky they can't see my insides!  Over the last 5 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.

Here's to another 5 years of Lanreotide!

Thank you for reading

Ronny

I don't post everything on WordPress so please like my associated Facebook page to keep up to date (click here)

Disclaimer
My Diagnosis and Treatment History