This post has been superseded by the following:
Lanreotide: it’s calling the shots – click here.
Lanreotide: 10 more years please! – click here.
Lanreotide vs Octreotide – click here.
Original post:
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.
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Hi Ronny, I came across your promising blog in my conquest to better understand NET and Lanreotide as the suggested treatment for my father. I took him to the emergency for what we though was a strangulated intestine due to an ongoing hernia only to find out he has grade 2, stage 4 NET.
My question to you is did the Lanreotide help with weight gain and fatigue? I’m afraid for him to go through treatment as he has become so weak.
I hope he can have promising results like you.
I would love to continue to learn more from you and follow your journey.
Everyone reacts differently and this may improve or worsen because the cause of the weight loss or fatigue may not be the cause of what the drug is treating.
The fatigue and weight loss may be due to many things including vitamin and mineral deficiencies and malabsorption common with NETs of the abdominal area.
Read more about this here
https://ronnyallan.net/2021/08/08/cancer-related-fatigue-crf-neuroendocrine-cancer/
https://ronnyallan.net/2015/07/14/neuroendocrine-cancer-nutrition-blog-2-gastrointestinal-malabsorption/
Could you tell me a bit more about the actual injection.? I didn’t know you shouldn’t pinch the skin but instead stretch it. I also prefer standing up and having the injections lower down on the bottom. Is there anything else I should know? I love your blog xx
This should give you the answer https://ronnyallan.net/2015/12/09/lanreotide-its-calling-the-shots/
what is the cost of a monthly lanreotide injection to the patient in the UK? does NHS cover the cost?
Around $1500 and yes is the answer
Hello Ronny, I am using lanreotide autosolution for 2 years now, with none signifant side effects.
Question: can you use lanreotide autosolution for years and years? E.g. 10 years…
Two years ago my NET (grade 1) in my mesenteric was diagnosed by accident. I have a few small liver metastasis that did not increase these 2 years. This week I see my specialist to talk about resection of the 2 cm mesentric tumor (and I think some other hiding ones). I read your blog with your story “The 9 hour operation was planned to debulk …..I left the hospital some 19 days later ….”. So i’m getting a little nervous, such a big surgery and I don’t have no side effects of my NET now. I hope me and my doctor can make the best decission about ‘to cut or not to cut?’
I’m in my 10th year!
Hi Ronny it’s great to read your and views experiances.your wisdom is amazing and reaching out to the thousands only just found your site.
Hello Ronny , my name is Nina im from Wales i am on this injection and find it runs out after 21 days usually i get all the old symptoms back . I had a pituitary tumour removed on 20 Sept 2013. I have a condition called Acromegaly and also MEN 1 Disease of uncertain significance in other words there is no medical definitive reference for me i am however doing quite well , i would be most interested in finding out if you or anyone else experiences this after the three weeks. kind regards nina
Hi Nina, sorry to hear about your issues. Yes, I have heard of quite a few people with “21 day” issues who are now prescribed lanreotide every 21 days instead of 28. Hope you get some answers.
My husband has been on Lantiotide for three years, he has been doing very well, except for dirarehea, is there any suggestions from anyone as to what can help in this area, he has had gastro stop but that upsets his stomach..
Thank you for your help…
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It’s important to understand the cause. Very individual problem. Try this blog https://ronnyallan.com/2016/09/15/neuroendocrine-cancer-the-diarrhea-jigsaw/
Thanks Ronny I have only recently been diagnosed and have had my third Lanteotide monthly injection You have been so much help to me and i am grateful to you for that take care Martin from Glasgow Scotland
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thanks for the nice comnment
Hi Ronny , sorry about all the typos ! I’ll have to trawl through all the articles I’ve read then about low histamine . To get the reference . Are you around for November 10th? NETS awareness day? I’ll be in the Dome on the cake stand ! No not on it ! I hear you comment !
I’ll be at home mostly, I’m having a worldwide awareness session with thousands of others 😀
I am eight months post colon resection for neurendocrine carcinoid and just had my seventh injection of somotuline depot. I am doing well and recent scans show no regrowth. The nurse never squeezes the injection site and reminds me never to rub the injected area. The shot itself is tolerable. I do have some side affects ie; bone aches and pains and my seratonin levels are low causing sleep problems for which I am trying to adjust to. However, if this is the worst I get then I do consider myself Blessed.
I self administer the Lancreotide injection into my thighs . I dreadful but actually it’s fine! I think my dread is being disturbed whilst doing it rather than the injection! I forget about getting the temperature up to ambient though ! I’ll rember that next month . The affects are scouring almost and this really puts me off having the Lanreotide four weekly injections . The bone lesions are stable but the liver tumours have tripled in two months . Good to read about the accuracy of the biopsy route into the liver . I’m ver nervous of the biopsy though . I gave a wonderful neuro endocrine nurse at our local hospital . I now feel like his stalker !! Email him prob leaky three times a week with concerns , reactions to foods , checking appointments are in course . He’s an angel ! Measured responses .. Actions taken and awareness and open mindedness . All brilliant traits in your first point of contact in this mine field ! Thanks Ronny , again, really interesting informative blogs .. Was it hear I read pea shoots and watercress help with low histamine? I’m trying to find the evidence so I can show to this nurse ? Steph xx
Histamine can be more of an issue in foregut NETs but excess serotonin appears to be the main culprit in diarreah. The thing about triggers is that it’s very individual and what works for one might not work for another, keep experimenting, it took me a year! Good luck with the biopsy. Porridge is a good choice, one of my experimental foods which has stuck (just tucking into mine now😮😮😮😮😮) And toast for lunch works for me 😁 DAO is something I’ll study for my histamine blog. You’re braver than me with self injecting Lanreotide, I declined the offer of a DIY! We share the same NET Nurse I suspect (Poole?). I would not have blogged on pea shoots and watercress 😀
[…] Ward” sign above the door gives it away. I’m here for my 28 day cycle injection of Lanreotide which will hopefully keep my Neuroendocrine Tumours at bay. I look all around, the temporary beds […]
“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)”
Am just starting treatment, not totally clear why your oncologist made the choice. Less side effects, better response, or ?
Is there data?
Thanks and good luck
Thanks for commenting Charles. Lanreotide approved in the USA for symptom control and anti tumour effects. Approval of Octreotide based on symptom control only. However trials since confirmed both have anti tumour effects. Lanreotide has better delivery system. Are you following my Facebook blog? I post more stuff there. If you ‘Like’ this page, you will get my feed https://www.facebook.com/NETCancerBlog
Two Comments one for Ronnie and one for Ronnie and Jim:
Measure your ankles morning and night to see if there is a difference. I have experienced a similar problem with itching and found wearing support stocking fixed it. My ankles were swelling an inch roughly every day. No one at the hospital was interested; the swelling down to mild fluid retention was not enough to concern them. An elderly lady I know suggested the stockings and they work great, no swelling, no itch. One leg may swell more than the other?
I have had exactly the same problem with nurses and the injection. I got my self and partner trained up. It is painful in the thigh, I gave up on that, but done in the bum by my partner is great. If the injection is not warm enough it is very thick and makes the injection more painful and lumpy, nurses are usually in a hurry. It needs to be at room temperature, out the fridge for half an hour, a bone of contention with nurses. You could also get a friend trained to do it if your wife can’t. I have a friend ready to step in if there is a problem with my partner. He could break an arm for example and not be able to do it.
You get 2 injections delivered to your home free, if you live in England. Other countries will have their own system. You refrigerate them. I keep mine in a tupperware box right at the back of my fridge. The prescription is set up to come automatically every 2 months and they ring you to arrange when you will be in for it.
I used to dread the injection I have a skinny bum and one nurse hit bone. I am certain if you look around some one will do it for you. Take control and get it right. There are some good confidence boosting bits on utube my partner kept looking at before he did it as he was so nervous. Best thing I ever did, saves trips to doc or hospital as well.
thank you Christine – you are a wonderful contributor to the blog! I still go to hospital to get my injections, it’s working out OK so far (except for a recent minor blip on location (the dartboard post!)). First question I always ask them is “Had it been out of the fridge for half an hour at least?”.
I’ll raise it again with my Onco who I’m seeing within the next 2 or 3 weeks.
Hello Ronny
I’ a relative new comer to this treatment (June 2014), so far its not gone as well as one would hope.
I have had unpleasant side effects since then, mainly diarrhoea, I’ve lost 2.50 stone, since June, they now have found that I’m not absorbing fat from my diet.
on top of this the ‘specialist Nurses’ have turned out to be a little less specialised, than I expected. Several of them, have began giving me my injection by ‘pinching’ what remains of the flesh, on my buttock, and take particular offence and umbrage when I (or my wife) point out that, the skin, should be stretched, and not pinched.
This has been exacerbated, when (not unreasonably, we think) a Nurse, we’ve not met, before, is asked ‘have you given these injections before and do you know not to pinch?
We have had some rather unpleasant and upsetting exchanges of opinion, at these times. Nurses telling me, well it depends what you read, or it’s just an injection, it’s not complicated.
in fact the nurses have complained to my oncologist, that I’ upsetting the nurses, My oncologist felt it necessary to call me in, for what I thought was a ‘normal consultation, to impart information, or discuss my medical treatment (my injections). we attended the appointment at some inconvenience, and financial cost, only to be told off, and told to stop upsetting the nurses. she also wrote to my GP, telling her about her view of my ‘unreasonable behaviour’.
What I would like to know (not withstanding, all this nonsense), is in your experience do the symptoms eventually subside?
Wow Jim, that’s a tough one. Putting the issues with nurses to one side because I cannot really help you much with that other than to say that I always try to have a good relationship with mine. However, that said, they should know how to give this specific injection.
I don’t know what surgery you’ve had, so it’s difficult to respond properly. However on the assumption you have had some surgery, it will take a while and some assistance and some adjustments will need to be made. Surgery will have some effect, injections could exacerbate. Look out for a future blog on supplements and malabsorption. Also check out my facebook page please. Good luck