Well differentiated – Ronny Allan – Living with Neuroendocrine Cancer

16Mar 2024 by Ronny Allan 20 Comments

Neuroendocrine Tumours (NET) – benign vs malignant

Reviewed and Updated 13th March 2024 One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the 'benign vs malignant' question. It's been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ..... at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET specialist let alone a doctor who is not familiar with the disease. Going forward I'm mostly intending to use the term Neuroendocrine Tumours (NETs) as that is where the problem…

11Mar 2024 by Ronny Allan 25 Comments

The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2022 classification changes)

Patient Advocacy

- Updated 11th March 2024 - This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of Neuroendocrine Neoplasms is so significant, so gamechanging, that I have re-released the updated text. You may see these important publications called 'Blue Books'. Words are very important in Neuroendocrine Neoplasms (NENs). Nomenclature has important meaning and context more than most other cancers due to the heterogeneity of this group of neoplasms. Grade and Stage are two factors inextricably linked to the nomenclature and while there have been less changes in these areas in the 2022 update, I have incorporated both in their own sections with enhancements to improve understanding. Don't be confused by the "2022" date as the major update is…

12Feb 2024 by Ronny Allan No Comments

Lower grade higher stage NETs – slow motion, chronic and indolent?

Awareness, Patient Advocacy, Survivorship

Context I write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a catch all for both well differentiated Neuroendocrine Tumours (NET) and poorly differeniated Neuroendocrine Carcinomas (NEC). The latter is almost always an aggressive cancer and less common than its less aggresive NET relative (when Small Cell Lung Cancer is not incuded in the math). That said, the higher grades of NET can also be quite aggresive but very often still with a better outlook than NEC. Well differentiated NETs, particularly at the lower end of the scale tend have a good outlook, even at the higher stages incuding Stage IV. Some at the lower end of stage and grade can even be removed with curative intent and patients…

26Aug 2023 by Ronny Allan 1 Comment

Phase 3 CABINET Clinical Trial – Cabozantinib for Advanced Neuroendocrine Tumours

Clinical Trials and Research

BREAKING NEWS - 24TH AUG 2023Exelixis Announces Remarkable Efficacy in CABINET Trial for Advanced Neuroendocrine TumorsOn August 24, 2023, Exelixis made an exciting announcement regarding the Phase 3 CABINET pivotal trial. This trial focused on evaluating the effectiveness of cabozantinib in treating advanced pancreatic and extra-pancreatic neuroendocrine tumors. The CABINET trial was a significant undertaking, involving multiple centers and enrolling a total of 290 patients who were divided into two groups.The trial progressed smoothly, but to everyone’s surprise, it was stopped early. The reason for this premature conclusion was the remarkable improvement in efficacy observed. The Alliance for Clinical Trials in Oncology independent Data and Safety Monitoring Board unanimously recommended ending the trial due to these unprecedented results."CABINET trial will be unblinded and stopped early due to a dramatic improvement…

09Mar 2023 by Ronny Allan 1 Comment

A tribute to the life and legacy of Miranda Filmer

Awareness, Clinical Trials and Research, Inspiration

It's true to say that Neuroendocrine Cancer is an older person's disease, the epidemiology is clear on that. But I do see many young people diagnosed. In my own experience and observation, I normally see three main scenarios with younger people; an incidentally discovered appendiceal NET after appendicitis, someone with hereditary NET (e.g. Multiple Endocrine Neoplasia (MEN)) or an aggressive version of the disease. There are others but I find these are the most common scenarios I see in younger people. For me personally, as a father and a grandfather, it's often heart-breaking to read these stories. I wanted to write about one of the latter scenarios, a younger than average person with an aggressive version of our disease and one that eventually was the cause of her death. It…

23Aug 2022 by Ronny Allan 1 Comment

The Heterogeneity of Neuroendocrine Neoplasms

Awareness, Patient Advocacy

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are heterogeneous tumours .............". The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements. This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only one syndrome. Once again, this is partly related to the lingering use of the term Carcinoid. However, while I applaud national and international NET foundations for providing GP (PCP) with symptom lists, they…

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 and Research, 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…

02Sep 2021 by Ronny Allan 6 Comments

I thought I was going to die. I didn’t

Inspiration, Patient Advocacy, Survivorship

Opinion. It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability. BUT there is also the thought of dying of cancer. I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65. I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger person.It's known that the lower grades of Neuroendocrine Tumours (NETs) have fairly good outlooks but there are still many factors at play, including stage, primary location, grade and differentiation, functional/non-functional,…

09May 2019 by Ronny Allan 5 Comments

A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy

Reviewed and updated 30th May 2023High Grade Neuroendocrine Neoplasms - the forgotten patient group?When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short. Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming. I too am guilty of having a large Facebook site falling into this category. It's little wonder that those with high grade disease can often feel like the forgotten patient group. Clearly all the aforementioned organisations support all patients regardless of grade, but it's true to say that the naming and general use of terminology continues to fall behind. It's also true that…

19May 2017 by Ronny Allan 5 Comments

ASCO 2017 – Let’s talk about NETs #ASCO17

Clinical Trials and Research

ASCO (American Society of Clinical Oncology) is one of the biggest cancer conferences in the world normally bringing together more than 30,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. As Neuroendorine Tumors is on a roll in terms of new treatments and continued research, we appear to be well represented with over 20 'extracts' submitted for review and display. This is fairly complex stuff but much of it will be familiar to many. I've filtered and extracted all the Neuroendocrine stuff into one list providing you with an easy to peruse table of contents, complete with relevant linkages if you need to read more. For many the extract title and conclusion will be sufficiently educational or at least…

16Nov 2016 by Ronny Allan 16 Comments

“You must be doing OK, you’ve not had chemotherapy”

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment

If there's a word which is synonymous with cancer, it's chemotherapy. It's what most people have in their mind when they are talking to a cancer patient...... 'have you had chemotherapy' or 'when do you start chemotherapy'.I was nonchalantly asked by a friend some time ago 'how did you get on with chemotherapy' - he was surprised to hear I hadn't had it despite my widespread disease. Cue - lengthy explanation! I wasn't annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of systemic chemotherapy. If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair.Sure, chemotherapy is not the nicest treatment to receive, and it does…

26Apr 2015 by Ronny Allan 9 Comments

Chemotherapy for Neuroendocrine Cancer

Treatment

Edited and checked December 2022 One of the unusual aspects of Neuroendocrine Cancer is that chemotherapy is not normally considered as a 'standard' or first-line treatment, unlike many other cancers. One exception is high grade (Grade 3) where it is very often a first and/or second-line therapy. This is particularly the case with poorly differentiated Neuroendocrine disease, by default labelled as Neuroendocrine Carcinoma (NEC). Many people think Chemotherapy has a short life span due to recent advances in medical science, some citing Immunotherapy as its replacement. However, it's far too early to write off chemotherapy which is still used in many scenarios and remains a tool in the arsenal of treatments for many cancer types and is predicted to do for some time yet. See more informed reporting about this…

Tag: Well differentiated