Somatuline Autogel (US: depot) - Ronny Allan - Living with Neuroendocrine Cancer

10Sep 2023 by Ronny Allan No Comments

Lanreotide: Ipsen injection devices vs generic injection devices

Treatment

Whenever I get a chance to talk to a pharma involved in somatostatin analogue injection devices, I tell them one very important thing ...... "To the patient, the injection delivery is almost as important as the drug". I also add that my opinion is based on thousands of comments about the patient experience in my patient online group. My own experience is based on the use of Sandostatin Acetate (Octreotide) daily shots (the ones where you break an ampule open and suck the drug into the syringe etc). I was pleased to see some later developments in this area such as the BYNFEZIA PEN. However, the use of octreotide daily shots was a short-term solution to prepare me for surgery and this was followed by monthly somatuline autogel (Lanreortide) which I…

08Dec 2022 by Ronny Allan No Comments

Lanreotide: 12 more years

Inspiration, Treatment

I once wrote a blog entitled "Four more years". I was watching the US elections back in 2014/15 and that phrase come up after it became the most retweeted tweet on twitter (since been overtaken several times). As a blogger, I was trying to tie in that popular phrase with my lanreotide experience hoping it would drum up some blog views. I can tell you now, it worked as I still get hits today from unsuspecting political buffs! I've since written updates at the 11-year point and will update you each year. This year I wanted to recount my story about the events leading up to Injection 1 on 9th December 2010. 9th December 2010 I was at home recuperating from major surgery wondering what the next event in my…

16Mar 2022 by Ronny Allan 4 Comments

Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Clinical Trials and Research, Patient Advocacy, Treatment

An Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide) - now that sounds exiting. It doesn't seem that long since we got the new improved injection delivery system for the current model of Lanreotide. I had to look at my blog articles for the announcement of that and was surprised it was way back in 2019. It may be a shorter time period for many though, UK was near the front of that rollout. I personally found the new injection a better experience and I know the nurses were happier too. However, I also know there was some disappointment that the injection gauge and length were the same and therefore there was little change for many in terms of the 'experience'. Speaking from a personal perspective, there was not…

22Apr 2021 by Ronny Allan 10 Comments

Generic Somatostatin Analogues for Neuroendocrine Cancer

Treatment

Generic Somatostatin Analogues. I've covered a lot about somatostatin analogues, particularly the two predominant approved drugs Lanreotide and Octreotide. Recently I read about generic drugs and found there are some for octreotide and as of Jul 2021, at least one for Lanreotide. I was concerned to hear a patient asking a question about generic drugs in my private Facebook group with the main concern being they could be of lesser quality. I studied that in more detail and here are the results of my research. What are generic drugs? Primer Companies take out exclusive rights called patents on each new drug they discover. If a company has a patent on a drug, only that company can market it under their brand name once it's been granted a licence. Once the patent expires,…

07Mar 2021 by Ronny Allan No Comments

Treatment for Neuroendocrine Cancer – a summary for patients

Treatment

ScopeThis summary provides an overview of the types of therapy known for treating Neuroendocrine Cancer. They will have been approved at least by one national or regional approval agency, may not be available or approved in your own country; and may appear in clinical guidelines for the treatment of Neuroendocrine Cancer.Clinical trials will not be covered, although it's noted that some of the approved treatments listed may be in follow on trials either to prove new coverage or used in combination with another drug. For a list of clinical trials covered by the author, click here. This summary will not include complementary or alternative treatment but may cover or overlap with experimental treatment. Who recommends the best treatment for my condition? Different types of doctors often work together to create a…

25Feb 2021 by Ronny Allan No Comments

My treatment is a pain in the butt!

Treatment

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email The post header is a bit ‘tongue in cheek’ (…. did you see what I did there?) I’m very happy to have this treatment every 4 weeks – I can think of far worse scenarios. When I was first diagnosed, the dreaded word ‘Chemo‘ was discussed. Chemo isn’t particularly effective in treating the lower grades of Neuroendocrine Cancer but it is used extensively at high grade and often in Grade 2 showing more effectiveness in pancreatic NETs. Looking back though, my Oncologist may have meant in conjunction with a liver embolization (i.e. TACE) on the basis this was scheduled once in June 2011 following liver surgery. Prior to my diagnosis,…

17Jan 2021 by Ronny Allan No Comments

Lanreotide and Keytruda – the PLANET study (NCT03043664)

Clinical Trials and Research

Headline: Roughly 40% of patients with advanced, progressive gastroenteropancreatic neuroendocrine tumors (GEP-NETs) treated with pembrolizumab (Keytruda) in combination with lanreotide (Somulatine Depot) achieved stable disease, according to results from the phase 1b/2 PLANET clinical trial presented during the 2021 American Society of Clinical Oncology (ASCO) Gastrointestinal Cancer Symposium.I've written about Pembrolizumab (Keytruda) before in my general immunotherapy coverage - click here. I did note they weren't really having much luck with Neuroendocrine Neoplasms although I do see some success (.... but not enough) in poorly differentiated carcinomas. Well differentiated NETs remain an immunological desert. However, this poster abstract from ASCO GI conference caught my eye.“Pembrolizumab has antitumor activity in a subset of GEP-NETs patients,” wrote the investigators. “We hypothesized that the lanreotide, by its antitumor effects and reduction of serotonin,…

08Dec 2020 by Ronny Allan No Comments

Lanreotide: Eleven more years please!

Inspiration, Treatment

Back in February 2015, I wrote an article called "Four more years" and the title came from an election campaign happening at the time when I had been on Lanreotide for approximately four years. Inspired by this campaign slogan, I too wanted four more years and crafted the blog post. However, I was underselling myself as I've now hit 11 years of Lanreotide on 9th December 2021. On that day in 2010, I was still recovering from major surgery and hadn't had any somatostatin analogues since leaving hospital on 26th Nov. Prior to surgery, I had been taking daily shots of Octreotide which did have the effect of reducing the symptoms of (so called) carcinoid syndrome. I was also administered peri-operative octreotide to de-risk the chances of a hormonal crisis…

18Sep 2020 by Ronny Allan 1 Comment

Clinical Trial: Phase II CLARINET FORTE Somatuline Autogel (Lanreotide) increased dosing frequency

Clinical Trials and Research, Treatment

CLARINET FORTE is a prospective single-arm, open-label, exploratory, international Phase II study to explore the efficacy and safety of an increased Somatuline® Autogel® (lanreotide) dosing frequency (120 mg every 14 days) in patients with metastatic or locally advanced unresectable pancreatic NETs or midgut NETs, with centrally-accessed progression within the last two years while on a standard lanreotide regimen (120 mg every 28 days) for more than 24 weeks.Data announced in September 2020 at the 2020 European Society for Medical Oncology (ESMO), indicated the phase 2 results support a clinically meaningful benefit to a population of patients with high unmet medical need by potentially delaying escalation to more toxic treatments. This means patients with progressive NETs are able to remain on a more tolerable first-line standard of care for longer,” said Professor…

30Jan 2018 by Ronny Allan 1 Comment

I now take food with my medicine!

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email If you want to strike up a friendly conversion with a Brit, ask him or her about the weather - we're really famous for our weather conversations and they normally focus on rain or clouds! However, despite the famous British 'reserve' and 'stiff upper lip', they also frequently talk about being 'under the weather', a phrase meaning slightly unwell or in low spirits.I find myself smiling at some of the conversations I hear in medical establishment waiting rooms, particularly the potentially long wait for blood tests. Here, conversations bypass the weather and focus on being under the weather! I thought I was a regular when I started to recognise people…

08Aug 2017 by Ronny Allan 2 Comments

Lanreotide for Lung NETs – SPINET Clinical Trial

Clinical Trials and Research, Treatment

Reviewed and updated 19th October 2021. Phase III trial data updatedThere's been a lot of action in the area of what is termed Gastro-Entero-Pancreatic Neuroendocrine Tumors (GEP-NETs). It can therefore sometimes appear that Lung NETs are the poor relation. There are certainly some unmet needs in this area of the anatomy including a lack of research. However, there has been some recent movement. Last year, the use of Afinitor (Everolimus) was approved for progressive, non-functional NET of GI or Lung origin.SPINET Trial for Lung NETsIn late 2016, I tipped you off about an Ipsen sponsored trial for Lung NETs involving Lanreotide (Somatuline). SPINET is a Phase 3, prospective, multi-center, randomized, double-blind, study evaluating the efficacy and safety of Lanreotide plus "Best Supportive Care" (BSC) versus placebo plus BSC for the treatment…

13Jul 2017 by Ronny Allan 34 Comments

At home with Lanreotide (….and Octreotide)

Treatment

I think after 163 injections (as of May 2023), I think it's safe to say I'm now 'at home' with Lanreotide (Somatuline Autogel - Somatuline Depot elsewhere). I want to talk about Lanreotide here because that is where my experience is. However, below I have included a bit about how patients can get their long-acting Octreotide (Sandostatin LAR) at home too.I was fortunate enough to have the injection 'at home' via an insurance policy for the first 4 years of my treatment. That was handy because it was informal, chatty, and I had excellent 'continuity of service' with the same nurse administering 80-85% of those 54 injections. I only had 3 other nurses over that period covering my local nurse's holiday etc.When I retired from work, I then had to…

28Dec 2016 by Ronny Allan 28 Comments

Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

Treatment

Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved. So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone overscretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors. They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there are always outliers where such effects are displayed.Somatostatin is actually a naturally occurring hormone produced by the hypothalamus and some other tissues such as the pancreas and the gastrointestinal tract. However, it can only handle the normal release of hormones. When NET syndromes occur, the naturally occurring somatostatin is unable to cope. The…

09Dec 2015 by Ronny Allan 22 Comments

Neuroendocrine Cancer: My experience with Lanreotide (Somatuline Autogel/Depot)

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

On 9th December 2021, I celebrated 11 years of Lanreotide - click here to read about that.My Lanreotide ExperienceWhen 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…

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