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Ronny Allan
On 9th December 2023, I celebrated 13 years of Lanreotide – click here to read about that.
Update 11th Jan 2024. Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen. Clearly to distinguish its product from the generics now rolling out. Not seen similar yet for Somatuline Depot (US).
My Lanreotide Experience
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 and elsewhere as Somatuline Depot). Technically this is a hormone therapy (it’s not chemo).
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. Check out my Lanreotide vs Octreotide comparison blog.
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.
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.
Following an Octreotide Scan, various areas lit up confirming the output from previous CT scans. It also confirmed new ‘hotspots’ for further investigation. This specialist scan confirmed I probably had working receptors to receive something known as a Somatostatin Analogue to help with combatting the effects of Carcinoid Syndrome (please note that not having working receptors does not mean there is no benefit of receiving somatostatin analogues). I was therefore prescribed daily Octreotide (self-injecting) whilst I was waiting for my first major ‘debulking’ surgery, This treatment did eventually lessen the main effect of the carcinoid syndrome, facial flushing. It wasn’t until after my first 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 in Apr 2011 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. For North America, the equivalent instructions can be found here (Somatuline Depot). I don’t know precisely why (……. I do have my suspicions), but I’m always very sceptical about the criteria used to compile the list of side effects for any medicine. In my own mind, I’m fairly certain that people have existing symptoms or new symptoms as a result of coincidental treatment that are erroneously labelled under drugs during trials.
You can also self-inject Lanreotide but I’m not ready for that yet! If you do self-inject, please note it the site is “the upper outer part of your thigh”. Check out the Ipsen leaflet here. Self-inject may not be an option in all countries – please check with your provider.
I think the injection site is very important and getting this wrong will worsen the side effects. For the Healthcare Professional or trained family member administration, the site should be the superior external quadrant but not of the whole ‘butt’, it means the left or right buttock that is being used on an alternative basis. If nurses think the whole ‘butt’, they might be tempted to stick it quite close to the ‘intergluteal cleft’ – not advisable!
Know the instructions!
Although the patient leaflets are very clear on how to administer the drug, once the location is established, I always discuss the following with the Nurse before I receive the ‘dart’:
1. The injection should have been removed from the fridge at least 30 minutes before treatment. However, please note Ipsen clarified this in 2022 with the following:
“Store in a refrigerator between 2°C – 8°C. Store in the original package in order to protect from light. Once removed from the refrigerator, product left in its sealed pouch may be returned to the refrigerator (the number of temperature excursions must not exceed three times) for continued storage and later use, provided it has been stored for no longer than a total of 72 hours at below 40°C.” This can be found by clicking this link (section 6.4).
2. Don’t pinch the skin, stretch it. Injection site is upper outer quadrant and use alternate buttock each injection.
3. Put the needle in fast at 90 degrees, inject the drug slow – 20 seconds is recommended. As the drug is viscous, in any case, there is normally some resistance to a fast release. The new 2019 design has 20 marks on the plunger to assist administrators.
4. When withdrawing the needle, keep the plunger depressed until after removal from the injection site.
5. Do not rub or massage the area after as this action can interfere with the formulation of the drug. This is clearly stated on the drug information leaflet, i.e. ” Apply gentle pressure to the injection site with a dry cotton ball or sterile gauze to prevent any bleeding. Do not rub or massage the injection site after administration”.
See a video of the new re-designed syringe by clicking here.
Please note this is a US video thus the name Somatuline Depot rather than Autogel. Plus some of the rules regarding who and where the injection can take place may not apply to your country. Also any mention of approval wording may differ.
My experience with side effects
People have different experiences with side effects and just because a particular side effect is mentioned, does not mean to say that everyone will be troubled – many patients experience little or none. For me, over 7 years, I think I can attribute the following to Lanreotide:
- 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 and perhaps a coincidental occurrence and this problem seems much less of an issue over 7 years later. EDIT- could have been Hypothyroidism – click here.
- 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, i.e. if the injection is done properly, I don’t really have this problem except for a second or two as it enters. Once, I had pain for 10 days. In my own experience, the best and least painful injections are those done by trained personnel who are confident.
- small lumps form at the injection site which is alternating superior external quadrant of the each buttock. You may occasionally hear these being called ‘granulomas‘ or ‘injection site granulomas’. The issue of ‘injection site granulomas’ seems to figure in both Lanreotide and Octreotide. Gluteal injection site granulomas are a very common finding on CT and plain radiographs. They occur as a result of subcutaneous (i.e. intra-lipomatous) rather than intramuscular/deep subcutaneous injection of drugs, which cause localised fat necrosis, scar formation and dystrophic calcification. But no-one seems to know why they occur with somatostatin analogues. 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 recommended for the smaller and thinner patient. Although the lumps have reduced in size, I have not seen a new lump for some time indicating location might have been the cause. They sometimes show up on scans. This is not a new problem and has been highlighted for the last 10 years in academic papers. This particular paper is useful, and the conclusion confirms this is not something that should worry patients too much. Read more here
- 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! When this occurs, it normally only lasts for 1 day before the normal energy levels return. Again, like the itching, this appears to be less of an issue today.
- malabsorption. although the side effects of gastro-intestinal (GI) surgery and gallbladder removal can cause malabsorption issues leading to steatorrhea (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. Most months, I notice a marked but short-term increase in this problem normally within 48-72 hours of the injection.
- elevated blood glucose. This is a new issue in 2018 but has been brewing for a year or two. The patient information leaflet for Lanreotide (and for Octreotide) clearly states that this is a potential side effect and asks those who are already diabetic, to consult their doctor about monitoring doses of diabetic medicine. I’m working with my doctors to keep my blood glucose down to avoid becoming diabetic. Please read this article covering the connections between NETs and Diabetes
The new syringe design (2019)
Please note a new syringe for Lanreotide will be available in 2019, at least in Ireland and UK which have confirmed dates (UK is end of June rollout begins). However, Ipsen are committed to roll it out to the rest of Europe, US, Canada, Australia and New Zealand by end of 2019 (details to follow) following necessary regulatory approvals. See photos below.
Further information will be communicated to healthcare professionals in advance of this, to enable them to inform their patients, who have been prescribed Lanreotide. In addition, the patient information leaflet included in the packet will have clear instructions for use. There will be a prominent yellow box located on the outer carton of the medicine, alerting healthcare professionals and patients that a new syringe is contained inside.
The new pre-filled syringe for Somatuline® Autogel® was the result of several studies, involving patients, their caregivers, nurses and other healthcare professionals, to inform and test enhancements to the existing pre-filled syringe. Notable new features are modified ergonomics and handling, a needle shield removal system, an injection process with plunger support and heightened ease of use. The automatic, built-in safety system, which helps to prevent needle stick injury by locking in place following the administration, has not been changed.
Please note that the medicine is still the same and the formulation and storage conditions have not changed.
Some pictures with descriptions:
Does Lanreotide have an anti-tumour effect?
A few 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 5 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 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 CLARINET open label extension study report additionally provided evidence for long-term PFS benefits of Lanreotide Autogel 120 mg in patients with indolent pancreatic and intestinal NETs. The ELECT study then looked at Lanreotide’s effect on symptom control leading to a supplemental approval for that issue – read more here.
There’s currently a trial ongoing in relation to Lanreotide and Lung NETs – read by clicking here.
Lanreotide for the Treatment of Metastatic or Unresectable Pheochromocytoma or Paraganglioma, the LAMPARA Study. Read more here
Finally, please spend 5 minutes watching this fascinating video from Ipsen. It explains in easy terms how Lanreotide works. It also has a useful summary of the side effects at the end. Click here to watch the video.
At Home Services
I’ve just been enrolled onto a new service called HomeZone whereby the injection is now administered at my home via an Ipsen provided and funded nurse. Read here to see if you can also take advantage of this service.
Lanreotide – a “dartversary”
In July 2018, I received my 100th injection of Somatuline Autogel (Lanreotide). I was very grateful to still be here so I thought it was worth a celebratory cake – injection themed!
Summary
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! Since diagnosis in 2010, 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.
The next design is radical!
Check out the Ipsen project to totally redesign Lanreotide – it’s very exciting. Click here or on the picture to read more. Not heard anything about this for a while.
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
General Clinical Trials Disclaimer
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided in the clinical trials document. It’s very important to check the trial inclusion and exclusion criteria before making any contact. If you need questions, the articles here is very useful Questions to Ask About Clinical Trials | Cancer.Net
The inclusion of any trial within this blog should not be taken as a recommendation by Ronny Allan.
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my wife has net well differentiated low grade that appears to have originated in the liver. She had the exact same cancer 20 years ago and had part of her liver removed at Emory University hospital. She has been taken the lanriotide injections for the past 15 months I am always scared to ask the doctor how long this can prolong her life. would he have an answer if I did ask?
probably not but I know it’s accurate to say that the introduction of somatostatin analogues 10 years ago has been forefront of a vast increase in survival statistics. https://ronnyallan.net/2019/11/17/prognostics-and-crystal-balls/
I had Major surgery my cancer is in lymph nodes it’s metastasis and my sergeant told me anything that shrinks tumors is chemotherapy
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I know many NET experts who would disagree 😄
Morning! I switched over to Lanreotide 120mg from Sandostatin LAR 120mg 4 cycles ago. I’ve had muscle pain & arm tingling in an old injury area of my shoulder ( rotator cuff). Now it’s down through my arm, the soreness, and alot of tingling and some numbness. Could this be a side effect? Opinions please. Thanks!!
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People do complain about ‘joint’ pain but they also do with Octreotide. It’s possible but its also possible to be a coincidence. The shoulder is a funny place as it can often be the site of referred pain.
I’ve been on for a year now I get terrible muscular pain Plus spasms I get very angry the week before I’m due then they putting me on every 3 weeks instead of 4 my cancer is metastasis
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They said it’s stable after each scan define more tumour it’s in my lymph nodes and metastasis tremz behind my belly into my back I had Major surgery they didn’t find the primary so how can you be stable if it’s popping up in different places
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About 10% have ‘unknown’ primary. CT apparently finds 95%. Ga68 PET scan should find them if you have the correct receptors. Are thry still looking?
Yes I’ve heard about joint pain a few times. I don’t have that side effect so I can’t really comment
Thank you so much for a wealth of information Ronnie! I was recently diagnosed with neuroendocrine cancer and will have my 2nd lanreotide injection next week. Not sure yet if it is effective on me but I hope so as the side effects are manageable. Your postingsite is the best and I appreciate your research and dedication. It’s so helpful to so many with this disease.
Thanks for the comment Evie! It normally takes up to 4 monthly injections before your body gets used to it. Good luck and please felt free to contact me any time. My Facebook site message facility is the best way.
Hi Ronny, have you come across any compelling NET special diets one should follow? I’ve always eaten pretty healthy, fruits, whole grains, vegetables, fish etc but there are some rather extreme cancer diets that some follow although the science is spotty. What advice have you been given? Thanks for your insight!
Evie
this is a huge subject which can be very individual depending on which type of NET, what surgery you’ve had, if you have a particular syndrome etc. The best advice I’ve seen is encompassed in my nutrition blogs as this contains advice from Tara Whyand, a NET dietitian https://ronnyallan.com/2016/08/02/neuroendocrine-cancer-nutrition-blog-4-food-for-thought/
I was diagnosed with Neuroendocrine cancer in June of 2014 & had sugery July of 2014. They were not able to remove all cancer so I did 6 weeks of radiation therapy & now am on Lanreotide monthly
I love the you are posting about your journey. I am doing the same, it’s very therapeutic and helps me deal sometimes. I’ve only just discovered your blog, but I’m definitely following you now! Feel free to follow me if you want:
http://www.YourWorthyOpponent.WordPress.com
Great blog as Always Ronny, thanks. Also very pleased to read this today as I had been trying to find out if lanreotide was prescribed for NETs on nhs.
I was wondering, did your oncologist explain why he chose lanreotide over sandostatin for you?
Thanks again
Not really but I’m glad he did when I look at the issues Octreotide users can sometimes have (mixing etc). Plus in hindsight, the evidence of its antitumour effects.
I’m amazed you have had the injection for 5 years and I’m learned about this year. ☺
My NET cancer was diagnosed Sept. 2013 and I have not had surgery either. My primary tumour is in my colon with three secondary tumours on my liver and one on a lymph node. Beginning Sept. 2014, I had 4 treatments of Lutetium 177 (PRRT) over a 7.5 month period. The primary tumour has shrunk significantly and the largest liver tumour is also noticeably smaller. The other growths have not changed and there are no new ones. As a result, I am now receiving Lutetium every 6 months. I have also had 30 Sandostatin LAR injections on a 28 day schedule. They are given by a trained nurse who is provided by the drug company. Self administration is not encouraged because of the very precise mixing requirements. I have had absolutely no side effects from the Sandostatin other than constipation which may or may not be related since I’m also taking a blood pressure medication and calcium. Either one or both of those could be responsible for that. The viscosity of the medication has occasionally been an issue as the needle can plug up requiring more than one poke. That rarely happens though and only once did I require more than 2. I felt a bit like a pincushion that day when I ended up being poked twice on each side! It has been worth even that discomfort though as I no longer experience any of my previous symptoms which included stomach pain, diarrhea, occasional racing heart and flushing. I am thrilled to say that, at this point, my quality of life is hardly affected at all by the fact that I have NETS. I count each day a blessing as I know there’s no guarantee that this will last.
Ronny, Have been following your progress for a year now since my own diagnosis in October, 2014. I have had no surgery even though I’m stage IV NETS with main in ilieum, gone to liver, breast and one lymph node. Monthly injections of Octreotide, stable, no further cancer progression. Changed lifestyle completely, take herbs, homeopathic preps, etc. Wonder how long I can continue like this without surgery. Am waiting for and opting for PRRT treatments to be FDA approved here in the states. Any ideas or comments on this?
I think Doctors have so many variables and factors to consider. One is grade. Most NETs are Grade 1 (low), I. E. They are slow growing. Now…. as you have liver and other mets, presumably your primary could be considered malignant withvariable potential to spread regardless of the grade. Personally I would say you should be a candidate for surgery. Back to the doctor’s variables and factors. I suspect that occasionally doctors will take the patients condition into account, such as comorbidities, condition to withstand the surgery (perhaps bringing age into the equation). Has your doctor said why no surgery? Is he a NET specialist?