Treatment - Ronny Allan - Living with Neuroendocrine Cancer

10May 2023 by Ronny Allan No Comments

Clinical Trial: Novel Somatostatin Receptor Subtype 2 Antagonist Labelled With Terbium-161 (161Tb-DOTA-LM3) (Beta plus)

A new clinical trial post.What is Terbium-161 (161Tb-DOTA-LM3) (Beta plus).Terbium-161 is a radioactive substance. DOTA-LM3 is a novel somatostatin antagonist targeted using somatostatin receptor number 2 (SSTR2). Combined they form a radioligand for use in Pepetide Receptor Radionuclide Therapy (PRRT). It's a beta emitter but labelled 'plus' on the basis it offers more than the currently approved Luthera product (lutetium 177 or 177Lu Dotaxxx series). There is evidence that terbium-161 (161Tb) is more powerful than 177Lu, not only in combination with SST2 agonists but particularly with SST2 antagonists.Agonist vs Antagonist in the context of PRRTThe currently approved Luthera product (lutetium 177 or 177Lu Dotaxxx series) are SST2 agonists. SST2 antagonists are more efficient because they can access more binding sites on the cell surface, resulting in higher tumour uptake and…

12Apr 2023 by Ronny Allan No Comments

Piss off cancer, it’s 12 years since my liver surgery!

Patient Advocacy, Survivorship, Treatment

I'm still here I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention, didn’t have a much grander announcement than the one presented to me in 2010 (or had I been paying more attention, in 2008 or 2009). I will never know if a much…

16Mar 2023 by Ronny Allan No Comments

Experimental drug for Gastric NET – Netazepide

Clinical Trials, Treatment

Gastric NETs When I wrote my post entitled "Spotlight on Gastric Neuroendocrine Neoplasms", I explained what these were with some emphasis on the association with hypergastrinemia (elevated fasting serum gastrin levels) with Type 1 and 2 gNETs being differentiated by the settings in which this occurs. This oversecretion is not the same as so called carcinoid syndrome found in other gastrointestinal NETs. Many people with a Gastric NET will already have acid reflux related issues and many will be taking medications such as proton pump inhibitors. But I was surprised to find there was not an approved targeted medication that aims to decrease gastrin levels. It's true to say that somatostatin analogues (SSA) inhibit the secretion of many NET associated hormones including gastrin but SSAs are not routinely prescribed for…

05Mar 2023 by Ronny Allan No Comments

Treatment for Neuroendocrine Cancer: Beware of the alternatives

Clinical Trials, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

The Alternative HypeCancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say. I know from my association with their research capability, that they take an evidence-based approach and do not publish these things lightly.Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatments. Nonetheless, any therapy which is not approved may be dangerous to cancer patients. One of the big selling points advocates of alternative therapies use is to claim that conventional treatments are ’toxic’ while their favoured treatment is ‘natural’, implying that natural is somehow better. In analysis, that is a fallacy. It’s easy to get sucked into…

22Feb 2023 by Ronny Allan 2 Comments

A spotlight on Gastric Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series, Treatment

What are Gastric NENsUnlike other anatomical types, the word Gastric is used to indicate a tumour (NET) or carcinoma (NEC) in the stomach. The stomach lies at the bottom of your oesophagus and connects to the first part of the small intestine (the duodenum). Clearly a key part of the gastrointestinal system, it processes food on its journey downwards.The stomach produces strong acid. This kills many microorganisms that might have been swallowed along with the food. It also contains special chemicals called enzymes. These are important for breaking down the food so it can be absorbed by the body. After it leaves the stomach, the partially digested food passed into the intestines where it begins to be absorbed.The main parts of the stomach are shown below (often this can give…

18Feb 2023 by Ronny Allan No Comments

Belzutifan for the Treatment of Advanced Pheochromocytoma/Paraganglioma (PPGL), Pancreatic Neuroendocrine Tumor (pNET), or Von Hippel-Lindau (VHL) Disease-Associated Tumors

Clinical Trials, Treatment

What is von Hippel-Lindau disease (VHL)?Von Hippel-Lindau disease (VHL) is an autosomal dominant disease that can predispose individuals to multiple neoplasms. Germline pathogenic variants in the VHL gene predispose individuals to specific types of benign tumors, malignant tumors, and cysts in many organ systems. These include central nervous system hemangioblastomas; retinal hemangioblastomas; clear cell renal cell carcinomas and renal cysts; pheochromocytomas, cysts, cystadenomas, and neuroendocrine tumors of the pancreas; endolymphatic sac tumors; and cystadenomas of the epididymis. What is Belzutifan (Welireg)?It is an oral hypoxia-inducible factor-2 alpha (HIF-2α) inhibitor. As an inhibitor of HIF-2α, belzutifan reduces transcription and expression of HIF-2α target genes associated with cellular proliferation, angiogenesis and tumor growth.On August 13 2021, FDA approved belzutifan (Welireg) to treat adults who have several tumors associated with VHL. Specifically, the drug is approved to treat VHL-associated renal cell carcinoma (a type of kidney…

14Jan 2023 by Ronny Allan No Comments

Cancer Ablation

Clinical Trials, Patient Advocacy, Treatment

What is Cancer Ablation?This is a minimally invasive surgical method to treat solid cancers. Special probes are used to “burn” or “freeze” cancers. Computed Tomography (CT), Ultrasound (US) or Magnetic Resonance Imaging (MRI) is used to guide and position the needle probe into the tumour. This requires only a tiny hole, usually less than 3 mm via which the probe is introduced. When the probe is within the cancer it is attached to a generator which “burns” or “freezes” the cancer. “Burning” refers to increasing the temperature of the tumour to such a level that cancer cells die. This is usually achieved by radio frequency probes, referring to the type of energy used to increase the temperature. “Freezing” refers to cryoablation which decreases the temperature to -40 C (-40 F)…

03Jan 2023 by Ronny Allan 2 Comments

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, Treatment

ReviewIn 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost. It takes 3-4 years to get a million hits based on current performance. To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened! I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal but 2022 has seen some pickup. Some of it is due to less writing but much is due to a change in Facebook algorithms which affected many ‘pages’ reducing their scope (the more cynical might say it was done to drive advertising revenue but …….). 2022…

14Dec 2022 by Ronny Allan No Comments

A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs

Clinical Trials, Patient Advocacy, Survivorship, Treatment

Background It's normally the case that the higher the grade/Ki67 in Neuroendocrine Neoplasms (NENs), the less likely the tumours will have somatostatin receptors and therefore be able to take advantage of somatostatin receptor PET (SSTR PET) as the gold standard in nuclear imaging. This is why most grade 3 NENs will receive [18F]FDG PET/CT which finds glycolytic activity in the tumour and predicts an aggressive disease course and normally a higher histological grade. It can also add to prognostic outcomes, which in turn can add to therapy choice decisions. There is an overlap though, particularly with the recognition of well-differentiated Grade 3 Neuroendocrine Tumours (NETs). It is known that some glycolytic activity might be present in some well-differentiated NETs, in particular, grade 3 and the upper range of 2 Neuroendocrine…

12Dec 2022 by Ronny Allan No Comments

Stereotactic body radiation therapy (SBRT) in the treatment of Neuroendocrine Neoplasms

Clinical Trials, Treatment

What is Stereotactic Body Radiation Therapy (SBRT)? External beam radiotherapy has been around for a while. But the next generation equipment and techniques are gradually being deployed. It's a confusing area with many synonyms which I found when I wrote about the subject in a treatment summary for patients. Some of the sub-components/synonyms may be familiar to you and are often used interchangeably with SBRT; but are actually a brand name (e.g.Cyberknife) or a type (e.g. Proton Beam). You will not find SBRT mentioned in any Neuroendocrine Neoplasms (NENs) guidelines and that's because it is not a "standard of care" for this disease. If it is not a standard of care, why did I include SBRT and various techniques in the above summary? I was prompted to include this after…

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…

05Nov 2022 by Ronny Allan No Comments

Incidental Findings in Somatostatin Receptor PET (SSTR PET) scans (e.g. Ga68/Cu64)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Incidental Findings in SSTR PETSomatostatin Receptor (SSTR) PET scans (e.g. Ga68/Cu64) have transformed the imaging landscape for Neuroendocrine Cancer, mainly for well-differentiated NETs, most of which will be somatostatin receptor positive. However, Oncologists/NET Specialists and radiologists must be aware of the various physiologic and other pathologic processes in which cellular expression of SSTR can result in interpretative error. Included in these pitfalls are incidental findings. What is an incidental finding? An incidental finding, also known as an incidentaloma, may be defined as “an incidentally discovered mass or lesion, detected by CT, MRI, or other imaging modality (e.g. PET) performed for an unrelated reason.” An increase in the utilisation of imaging examinations over the past three decades has led to a marked increase in the number of findings detected that are unrelated to the…

17Oct 2022 by Ronny Allan No Comments

Evolving Approaches in the Management of Neuroendocrine Tumor-Associated Carcinoid Syndrome

Patient Advocacy, Treatment

Introduction I found these 10 short video series from OncLive very useful. Each video ranges from 2 - 5 minutes long and is very easy to watch and digest. Not only a succinct primer on (so-called) carcinoid syndrome but also an update on the evolving approaches. And the series also includes information on Hedinger Syndrome (carcinoid heart disease) which can be caused by the effects of this syndrome. The panel includes some 'big hitter' names in our scientific community including: Satya (Nanu) Das, MD, MSCI (Oncologist) Jerome Zacks, MD (Cardiologist) Rodney Pommier, MD (Surgeon) Video list (click on the blue link to watch each one) Episode 1 - Overview of Neuroendocrine Tumors (NETs) (onclive.com) Episode 2 - Overview of Carcinoid Syndrome (CS) (onclive.com) Episode 3 - Overview of Carcinoid Heart…

11Oct 2022 by Ronny Allan No Comments

New test of pancreatic cysts to help with cancer detection

Clinical Trials, Patient Advocacy, Treatment

With NETs, particularly pancreatic NETs, due to a lack of efficient prognostic markers, it is difficult to identify which cases are more likely to metastasise than others. Identifying whether cysts will turn cancerous is also another area requiring a screening program as a standard of care to monitor. Molecular testing is advancing and this test I'm reporting here looks like good news in the case of assessing the risks of pancreatic cysts. Pancreatic cysts are common. For example, up to 15% of the U.S. population will develop a pancreatic cyst at some point in their lives. Most of these cysts are benign, but a small fraction will transform into cancer, including pancreatic NET. A molecular test developed by the University of Pittsburgh is able to distinguish benign pancreatic cysts from…

10Oct 2022 by Ronny Allan No Comments

Evidence of disease but stable

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Musings from a metastatic NET patient of 12 years plus In every surveillance session I've had since diagnosis, there was always something to report. Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings). However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me. That sentence alone probably translates to "stable". After a surveillance event in 2021, I was awarded the accolade of "reassuringly stable", a status which I was happy to accept! Words are very important to cancer patients, some people hang their hats on them and put their feet up, and some people google them until they are tied in a knot, still fraught with worry. Why can't doctors just…

03Oct 2022 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Welcome to my Neuroendocrine Cancer Glossary of Terms list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this list: 1. If your term begins with an A, click on A to find all terms beginning with A. Select your term from the list. 2. For numerical terms, please click on the hashtag (#) symbol in the A-to-Z strip. 3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on my website to display in the list. Please note I'm constantly working on the repository to clean up all definitions, adding and removing links where necessary,…

01Sep 2022 by Ronny Allan No Comments

Management of asymptomatic sporadic non-functioning pancreatic neuroendocrine neoplasms no larger than 2 cm: interim analysis of prospective ASPEN trial

Clinical Trials, Treatment

One of the most controversial subjects in Neuroendocrine Neoplasms is the management of small non-functional (asymptomatic) pancreatic NETs (NF-PanNEN). In the most general terms, surgery is not recommended in tumours less than 2cm. Allowances are made for those who are functional (i.e. symptomatic with one of several syndrome possibilities) or where the tumour is threatening important vessels (i.e. pre-emptive surgery). Normally watching and waiting is recommended. I wrote more detail in an earlier blog - Pancreatic Neuroendocrine Tumours - to cut or not to cut Some patients opt (or push for) a non-guideline surgery regardless and as one other patient advocate put it, "they will surgeon shop until they find one who will do it". While the guidelines are just that (guidelines), decisions on surgery in such cases must be…

08Jun 2022 by Ronny Allan No Comments

Clinical Trial: Dostarlimab, anti–PD-1 monoclonal antibody in Neuroendocrine Carcinoma

Clinical Trials, Treatment

BackgroundFollowing the Americal Society of Clinical Oncology (ASCO) conference in June 2022 (ASCO is the biggest Oncology event in the world), the media widely featured the results of the Phase 2 clinical trial of the drug Dostarlimab, an anti–PD-1 monoclonal antibody. The media often looks for headline-grabbing stories and this was one of them. One UK TV outlet said they may have found the cure for cancer, which is a reckless statement when you look at the size and boundary of the clinical trial referenced. The detail is, that this was a phase 2 trial for "rectal adenocarcinoma", but specifically locally advanced mismatch repair-deficient (dMMR) rectal cancer, allowing them to avoid surgery, chemotherapy, and radiation, at least for the time being. Nonetheless, the complete response in all 12 was clinically…

25Apr 2022 by Ronny Allan 2 Comments

Histotripsy: A new technique which destroys cancer using soundwaves (now in Clinical Trials)

Clinical Trials, Treatment

Illustration of histotripsy technology. Image courtesy of Medicine at Michigan Magazine. A new technique that destroys cancer using soundwaves. It also spurs the immune system to kill off any of the tumour left, scientists have revealed. The non-invasive treatment only needs to be partially effective to stop the cancer spreading.It is currently being tested on human liver cancers in the US and Europe following successful trials in rats. The team from the University of Michigan showed the non-invasive sound technology is able to prevent further spread with no evidence of recurrence or metastases in the majority of cases. The treatment, called histotripsy, noninvasively focuses ultrasound waves to mechanically destroy target tissue with millimetre precision. In many cases, the entirety of a cancerous tumour cannot be targeted directly in treatments due to…

16Mar 2022 by Ronny Allan 4 Comments

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

Clinical Trials, Patient Advocacy, Treatment

Breaking News 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 had already been 3 years. 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 sufficient change for me to consider moving to self-inject. I know (at least…

10Mar 2022 by Ronny Allan 3 Comments

Clinical Trial: Mycapssa (octreotide capsules) for Neuroendocrine Tumours

Clinical Trials, Treatment

The delayed-release capsules contain 20mg of octreotide. Update 20th Dec 2022The European Medicines Agency's (EMA) Committee for Orphan Medicinal Products (COMP) has adopted a positive opinion for orphan designation for the use of Mycapssa® in the treatment of carcinoid syndrome associated with neuroendocrine tumors (NET).Orphan designation in the European Union (EU) is granted by the European Commission (EC) within 30 days of a positive opinion being issued by the COMP. This designation provides certain regulatory and financial incentives including but not limited to product market exclusivity for ten years in the EU following regulatory approval. THIS IS NOT AN APPROVAL but it moves this one step closer. Update 14th July 2022. Amryt Receives Orphan Drug Designation from the FDA for Mycapssa® (oral octreotide) for the Treatment of Carcinoid Syndrome. The details of Phase 3 clinical…

07Mar 2022 by Ronny Allan No Comments

Clinical Trial: Testing the Use of Chemotherapy After Surgery for High-Risk Pancreatic Neuroendocrine Tumors

Clinical Trials, Treatment

An interesting trial centred on SW USA. The use of CAPTEM following surgery in high-risk pancreatic NETs (G2/G3 well-differentiated). Also includes the use of NETest at 3 time points, which is very interesting considering the recent withdrawal of Chromogranin A from US NET Guidelines. (Read about NETest here). Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide versus Observation in High-Risk Pancreatic Neuroendocrine Tumors (S2104) is a recently activated National Clinical Trials Network randomized phase II trial designed to compare CAPTEM chemotherapy versus observation following resection of pNETs (see Figure 2). Patients with well-differentiated grade 2 or 3 (Ki-67 up to 55%) pNETS with a Zaidi score of ≥3 who underwent resection (or ablation) for either localized disease with or without up to five liver metastases are eligible for…

20Jan 2022 by Ronny Allan 3 Comments

External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

Patient Advocacy, Treatment

Peptide Receptor Radionuclide Therapy (PRRT) has been around for a while and doctors are learning all the time about the most likely candidates. Selection of candidates and predictions on who will benefit most are still not an exact science (....and possibly never will be). Neuroendocrine Neoplasms are a heterogenous grouping of cancers, and heterogeneity also includes (but is not limited to) age, stage, gender, functional/non-functional, and pre-existing condition constraints. All of this complicates the task of therapeutic decision-making and sequencing. The attached cohort study aims to bound the issue and describe a method of allocating a Clinical Score (CS) to assist doctors and patients in their decision-making. According to the lead author, the CS is the initial prognostic score to help NET patients anticipate expected benefit from PRRT and is…

09Jan 2022 by Ronny Allan No Comments

Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Clinical Trials, Patient Advocacy, Treatment

What is the aim of this clinical trial?The aim of this single location trial in Imperial College London is to determine whether pre-treatment with ASTX727 results in re-expression of SSTR2 in patients with metastatic NETs, using 68Ga-DOTA-TATE to image epigenetic modification of the SSTR2 locus allowing subsequent treatment with Lutathera(i.e. PRRT). Patients entered into the study will receive ASTX727 orally up to 3 to 8 days prior to receiving Lutathera treatment. What is ASTX727?Oral Decitabine and Cedazuridine (ASTX727) is a DNA methyltransferase (DNMT) inhibitor currently being used in a trial to facilitate oral treatment of certain drugs for adults with intermediate and high-risk myelodysplastic syndromes (MDS) including chronic myelomonocytic leukemia (CMML).This is extremely technical, but from a study conducted by scientists at Imperial College London, they acknowledged that significant number of…

03Jan 2022 by Ronny Allan No Comments

Blog review and top 10 for 2021: RonnyAllan.NET

Awareness, Clinical Trials, Diet and Nutrition, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

I should be happy with over a quarter of a million views in 2021 but I'm not! Like 2020, my figures are down on previous years as the pandemic seems to have changed viewing habits, not to mention my own bandwidth during this period. I created my private Facebook group not that long before the pandemic started, and I think that has been playing a part as huge chunks of my time has been taken up on that special project. I also changed the nature and the type of posts on my "Ronny Allan" Facebook page, which led to fewer outlets for my blog posts. Hopefully, 2022 will be a better year. However, just as I was totally astonished to have been able to accumulate a million views of my…

05Dec 2021 by Ronny Allan 5 Comments

Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Diet and Nutrition, Patient Advocacy, Treatment

With Neuroendocrine Cancer patients, the mention of "diarrhea" is a topical subject. There's the usual claim that it's caused by carcinoid syndrome and for some that will be true, particularly people who have tumours associated with that syndrome, that is, those who have mostly a midgut primary; and that is, those who mostly have elevated levels of serotonin (via 5HIAA testing). When you look at epidemiology data, it becomes clear the numbers associated with carcinoid syndrome are much lower than what might be perceived when analysing many comments in any patient group - most epidemiological data suggests around 10% of the total number of NET cases. There are a number of reasons for this confusion including the belief that any type of Neuroendocrine Cancer can get carcinoid syndrome when in fact…

23Nov 2021 by Ronny Allan 2 Comments

177Lu-DOTA-LM3 – a novel radionuclide therapy proven safe and effective to treat neuroendocrine neoplasms (NEN)

Clinical Trials, Treatment

Update 10th May 2023 - This study has now progressed to a formal clinical trial based in Basel Switzerland. Read by clicking here or on the picture below: [caption id="attachment_42803" align="aligncenter" width="640"] Click on the picture to read more[/caption] A new type of peptide receptor radionuclide therapy (PRRT) has been shown to control disease in 85 percent of patients with metastatic neuroendocrine neoplasms, achieving complete remission in some patients. The first-in-human study utilized 177Lu-DOTA-LM3 therapy, which was administered without severe adverse effects and was well tolerated by the majority of patients. This research was published in the November issue of The Journal of Nuclear Medicine (see citing below). Conclusion: The antagonist PRRT with 177Lu-DOTA-LM3 could be administered without severe adverse effects and was well tolerated by most patients, with thrombocytopenia occurring in only a…

23Nov 2021 by Ronny Allan 3 Comments

Small Intestine Neuroendocrine Tumours: “No other cancer really looks like this”

Patient Advocacy, Treatment

It's known that Neuroendocrine Cancer is quite different in many ways from other cancers, notwithstanding the misnomer term carcinoid which is thankfully being slowly moved out of terminology. As a few examples:It's a wide spectrum heterogeneous cancer group with indolent isolated small tumours at one end all the way across to extremely aggressive metastatic cases at the other end.It's a cancer type that can be syndromically functional or non-functional to add to diagnostic and management challenges.It's a cancer that can appear almost anywhere in the human body.One of it's less well-known traits is the ability to produce multiple primary tumours. Most people might be thinking of Multiple Endocrine Neoplasia at this point (a syndrome that predisposes the patient to multiple primary tumours in different organs). However, I also mean multi-focal…

20Nov 2021 by Ronny Allan 2 Comments

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, Treatment

Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications. At that point, I had been keeping my diagnosis within close family and friends and my manager at work. People at work and my wider list of friends were probably wondering what was going on with me. Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up. To be honest, the first few days I was suffering a lot of fatigue and brain fog from the morphine/painkillers. The thought of posting stuff on Facebook was far from my thoughts. I was receiving…

15Nov 2021 by Ronny Allan 4 Comments

Do we need a new model for Carcinoid Crisis in NETs?

Treatment

(so called) Carcinoid Crisis is one thing that tends to raise concerns in patients and has been bubbling away in NET centres and in patient communities for many years. One of the big problems I have found is trying to place boundaries on it in terms of which types of NET does it apply to. My thinking was that surely it only applies to those tumours which were once described by that ancient misnomer "carcinoid" and yet you hear patients who clearly do not have a tumour that was once described as "carcinoid" talk about it, at least in terms of protection against it. Perhaps some of the confusion lies with the ancient misnomer term, another reason why we need to get rid of it. Many texts I read describe it…

13Nov 2021 by Ronny Allan 6 Comments

A Trial to Assess Efficacy and Safety of Octreotide Subcutaneous Depot (CAM2029) in Patients With GEP-NET (SORENTO)

Clinical Trials, Treatment

Some of the key differences between Lanreotide and Octreotide long-acting are:1. Octreotide long-acting needs constituting prior to administration - Lanreotide comes prefilled. 2. Octreotide long-acting is administered intra-muscular, Lanreotide is deep subcutaneous. 3. I probably should add Octreotide LAR cannot be self-injected but Lanreotide can. I suspect this type of delivery system may open up that possibility for Octreotide LAR. So, this clinical trial caught my eye. A version of octreotide long-acting which is prefilled and given subcutaneously. Plus, the manufacturers say it has a much higher bioavailability than the standard product Sandostatin LAR (bioavailability is the proportion of a drug or other substance which enters the circulation when introduced into the body and so is able to have an active effect).CAM2029 might therefore be considered a generic of Sandostatin LAR but better…

26Oct 2021 by Ronny Allan No Comments

CAR-T clinical trials for Neuroendocrine Cancer

Clinical Trials, Treatment

What is CAR-T?CAR-T – chimeric antigen receptor T-cell – therapy is specifically developed for each individual patient and involves reprogramming the patient’s own immune system cells which are then used to target their cancer, i.e. it's an immunotherapy. It is a highly complex and potentially risky treatment, but it has been shown in trials to cure some patients, even those with quite advanced cancers and where other available treatments have failed.The treatment involves several steps over a number of weeks. First the patient’s blood is taken and is sent off to the manufacturer’s laboratory. Here the patient’s blood is ‘trained’ to fight the cancer cells. The CAR-T blood is then transported back to the hospital and the patient is administered with the CAR-T to treat their condition.It has not been deployed in…

17Oct 2021 by Ronny Allan No Comments

In the land of small tumours, there is still a lot of work to do!

Awareness, Clinical Trials, Patient Advocacy, Treatment

I like reading the words of Dr Mark Lewis, an Oncologist and a Neuroendocrine Tumour (NET) patient himself (with MEN1). He always delivers with "enthusiastic vigour", a term he reduces to "brio" (which I had to google!)His article as usual sets a scene and he has form for looking back in the history of NETs. I'm sure he does this as it can often illustrate just how much clinical progress has been made since way back then. And that is the purpose of the recent article entitled "Continuing the Odyssey in the Land of Small Tumors". He quotes from a 1987 article written by Dr Charles Moertel entitled "An Odyssey in the Land of Small Tumors" and I suspect he selected this article from Dr Moertel as he too writes…

11Sep 2021 by Ronny Allan No Comments

Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials, Patient Advocacy, Survivorship, Treatment

Background. For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors. There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com) Episode 2 - Neuroendocrine Tumor Pathogenesis and Molecular Testing Expert insight on the pathogenesis of neuroendocrine tumors and the best use of molecular testing to inform treatment decisions.Neuroendocrine Tumor Pathogenesis…

30Aug 2021 by Ronny Allan No Comments

Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?

Treatment

Small Intestine Neuroendocrine Tumours (SI NET) are one of the most common types of Neuroendocrine Cancer, and also one of the most challenging to diagnose and then treat. Patients can have a very good outlook even when presenting with metastatic disease. However, it's true to say that some NET centres of excellence (CoE) or multi-disciplinary team (MDT) see a lot of SI NET patients have built up considerable experience in treating them, including the use of surgery. The surgical challenges are such that a surgeon not experienced in treating these cases may shy away or think they are inoperable, whereas MDTs or CoEs potentially have the experience available to operate or to make sound judgements based on their own experience. At the very least, they can offer a second opinion. …

13Jul 2021 by Ronny Allan No Comments

Every picture tells a story (point, click, read)

Awareness, Clinical Trials, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Treatment

I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Click here and answer all questions to join my private Facebook group Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Thanks for reading. Ronny I’m also active on Facebook. Like my page for even more news. Help me build up my new site here –…

22Apr 2021 by Ronny Allan 9 Comments

Generic Somatostatin Analogues for Neuroendocrine Cancer

Treatment

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 at 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? According to the US FDA, a generic drug is a medication created to be the same as an already marketed brand-name drug in dosage form, safety, strength, route of administration, quality, performance characteristics, and intended use. These similarities help to demonstrate bioequivalence, which means…

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,…

15Dec 2020 by Ronny Allan No Comments

Neuroendocrine Tumours – now you see them, now you don’t!

Treatment

In my post entitled "If you can see it, you can detect it", I listed the different types of scanning techniques and technology to find evidence of disease in Neuroendocrine Tumours (NETs). Of course, while scans, blood and (current) marker tests can give some pretty big and important clues, "tissue is the issue" to determine type.Even after formal diagnosis, seeing all the tumours can be a challenge with NETs. In the article I quoted above, I indicated that scans for NETs can be analogous to picking 'horses for courses'. For example, most NETs have somatostatin receptors and can often be seen better on functional scans e.g. somatostatin receptor scintigraphy (SRS) or somatostatin receptor PET (SSTR-PET), combined with the use of radionuclides designed specifically for this purpose e.g. In111, Tc99m, Ga68,…

13Dec 2020 by Ronny Allan 2 Comments

Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Clinical Trials, Patient Advocacy, Treatment

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Fascinating article from the Italian NET scientific community. This article is more than just what the title says, it provides overviews on many facets of NETs including markers, scans and PRRT itself. It covers how to select patients for PRRT in the first place, i.e. who is most likely to get a good response to this treatment and then look at how to track and assess that response. The important thing I gathered from reading is that none of this is a precise science, there are too many variables. And while this article focusses on the clinical factors, there can of course be non-clinical factors in play in different countries…

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, 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…

18Aug 2020 by Ronny Allan No Comments

Small intestine, large surgery

Patient Advocacy, Treatment

My own experienceAt my diagnostic consultation, the Oncologist told me I had Stage 4 metastatic Small Intestine NET (SI NET). He also told me that surgery would almost definitely be on the cards and would be referring me to an experienced surgeon in a different hospital for assessment. I was assured this surgeon was one of the most experienced in the south of England for NETs. This was before the current multi-disciplinary team was set up, but it did all seem so very organised and I felt comfortable, albeit apprehensive. Worth pointing out that surgery is not normally offered in cancer at Stage 4 but the slow-growing nature of most NETs allows for some leeway here. Statistics indicate that around 50% of SI NET present as metastatic cases, I'd like…

24Jun 2020 by Ronny Allan No Comments

Targeted Therapy for Neuroendocrine Cancer – Sunitinib (Sutent)

Clinical Trials, Treatment

Click here to see the A to Z of Neuroendocrine Cancer What is Sunitinib (Sutent)? Manufactured by Pfizer, this is a targeted biological therapy or more accurately, a multitargeted tyrosine kinase inhibitor (TKI). You may also see it described as an anti-angiogenic agent on the basis that these tumor types are highly vascularized and show high expression of something called vascular endothelial growth factor (VEGF), a key driver of angiogenesis in neuroendocrine tumors. Because NETs are generally hypervascularized tumors, treatment with antiangiogenic drugs seems a rational approach. A complex process but in the simplest of terms, sunitinib blocks a particular enzyme and keeps tumors from making their own blood vessels, which are needed to deliver oxygen and other nutrients to help them survive and grow. In clinical trials, SUTENT was…

22Jun 2020 by Ronny Allan No Comments

Targeted Therapy for Neuroendocrine Cancer – Everolimus (Afinitor)

Clinical Trials, Treatment

Click picture to read the A to Z of Neuroendocrine Cancer What is Everolimus (Afinitor)? Manufactured by Novartis, this is a targeted biological therapy or more accurately, a mammalian Target of Rapamycin (mTOR) inhibitor. It works by stopping some of the signals within cells that make them grow and divide. Everolimus stops a particular protein called mTOR from working properly. mTOR controls other proteins that trigger cancer cells to grow. So everolimus helps to stop the cancer growing or may slow it down. The drug is also approved for Renal Cell Carcinoma (RCC) and hormone-receptor-positive advanced Breast Cancer.The drug is administered in oral form (tablet). The recommended dose for AFINITOR® (everolimus) Tablets is one 10-mg tablet once daily but lower doses of 7.5-mg tablets, 5-mg tablets, and 2.5-mg tablets are…

10Apr 2020 by Ronny Allan 2 Comments

Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Treatment

"An unusual disposition of tumours"A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases for late diagnoses. Apart from the primary tumour invading nearby tissue/organs, the most common spread is the lymph nodes, these can take you from a localised Stage 1 to loco-regional Stages 2 and 3. Often the term distant spread infers metastatic disease (stage 4) to the liver, but I had some lymph nodes 'misbehaving' much further away than that. After my first nuclear scan (In-111 Octreoscan) during my diagnostic workup in Jul-Aug 2010, two areas lit up - left axillary nodes (armpit) and left supraclavicular fossa (SCF) nodes (clavicle). However, my MDT remained focussed on my primary and liver metastasis as this was where…

21Mar 2020 by Ronny Allan 2 Comments

COVID-19 and Cancer Treatment and Surveillance

Patient Advocacy, Treatment

This post was generated at the height of the pandemic and is not medical advice, moreover, it should not be considered up to date. For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation’s guidance. NEW CONTENT added 14th June 2020.For US patients - see the recently produced NANETS guidelines which provides guidance on the following:How is treatment for patients with NET/NECs likely to change during the COVID-19 outbreak?What should providers do to prepare their clinic for patients?Should octreotide or lanreotide be delayed or stopped in NET?Surgery: Can/should surgery be canceled or delayed?Liver-directed therapy: Should liver embolization be performed? Is one modality preferable to another in the context of the COVID-19 outbreak?Lutetium Lu177 DOTATATE…

22Jan 2020 by Ronny Allan 11 Comments

Neuroendocrine Cancer – Liver directed therapy

Treatment

Neuroendocrine Neoplasms (NENs) present complex challenges to diagnosis and treatment. Even in metastatic cases spreading to the liver, there are some important differences compared to the more common types of gastrointestinal tumours and pancreatic adenocarcinomas, e.g. their sometimes-indolent nature and their ability to oversecrete hormones causing distinct clinical syndromes. Also, the tumours are known to be highly vascular which is a feature where growth inhibition and symptom relief may be achieved by specific 'blocking' agents - this is particularly the case with liver metastases in well-differentiated Neuroendocrine Tumours (NETs).Spread to the liver may occur from NETs of the foregut, midgut as well as hindgut. NET metastases are usually multiple and of varying size. In most cases, both liver lobes are affected, but widespread (miliary) seeding throughout the liver is seen…

29Jul 2019 by Ronny Allan No Comments

Surufatinib for Neuroendocrine Cancer

Clinical Trials, Treatment

UPDATE 2nd May 2022. US FDA did not approve. Commentary from Healthcare New company Global Data. "On 2 May, the US Food and Drug Administration (FDA) rejected HUTCHMED’s new drug application (NDA) for its lead candidate, Sulanda (surufatinib), for the treatment of advanced neuroendocrine tumours (NETs). Issues pertaining to trial populations were raised in a complete response letter (CRL) and GlobalData expects this case to have wide implications for the whole field of oncology therapeutics. China-based HUTCHMED received approval for its multi-receptor tyrosine kinase inhibitor Sulanda in China for the treatment of pancreatic and extra-pancreatic NETs in June last year and December 2020, respectively. Following the submission to Chinese authorities, NDAs were also submitted to the FDA and European Medicines Agency (EMA). Two large Phase III studies formed the basis…