Cancer of unknown primary (CUP) - Ronny Allan - Living with Neuroendocrine Cancer

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…

23Dec 2020 by Ronny Allan 2 Comments

Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Clinical Trials and Research, Patient Advocacy

It's estimated that around 5-10% of Neuroendocrine Neoplasms (NENs) have an unknown primary - what that means is cancer cells have been found in the body but the place cancer began remains unknown. I wrote about this issue in more depth in my article "Needle in a haystack" - you can read that here. In that article, you will note that NET specialists through their knowledge and understanding of the behaviour of these comped tumours, can often drill down and gather various pieces of evidence to help narrow down the primary location. However, this new study would indicate they could have access to a new tool to be able to home in on a particular location.DNA methylation-based profiling is now routinely used in the diagnostic workup of brain tumors but…

25Feb 2020 by Ronny Allan 1 Comment

Clinical Trial: Lu-177 DOTATOC (PRRT) in adult subjects with Somatostatin receptor (SSTR) positive Pulmonary, Pheochromocytoma, Paraganglioma, Unknown primary, and Thymic Neuroendocrine Tumors

Clinical Trials and Research

Excellent news for those who don't have Gastroenteropancreatic NETs (GEP-NETs). A trial of PRRT is being set-up for the less common types of NET including those with an unknown primary. Using the DOTATOC radionuclide rather than the Lutathera model of using DOTATATE, this trial will cater for Pulmonary, Pheochromoctyoma, Paraganlioma, Unknown Primary and Thymic Neuroendocrine Tumours.Excel Diagnostics and Nuclear Oncology Center (EDNOC) announced today that its physician sponsored Investigational New Drug (IND) application to evaluate safety and efficacy of Lu-177 DOTATOC in adult subjects with Somatostatin receptor (SSTR) expressing Pulmonary, Pheochromocytoma, Paraganglioma, Unknown primary, and Thymic Neuroendocrine Tumors (PUT-NET), has received approval to proceed by USA Food and Drug Administration (FDA) and also charge authorization has been granted (IND#143631, NCT04276597). This IND is anticipated to start enrolling patients by early…

19Dec 2018 by Ronny Allan 2 Comments

Neuroendocrine Cancer: a needle in a haystack?

Patient Advocacy

Reviewed and edited 16th July 2023 It's no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the SEER database report issued in 2017 and also in many other places), there is still a lot of ground to cover. There are a number of reasons why these Neoplasms are often difficult to correctly and quickly diagnose including but not limited to: - they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood. Neuroendocrine Cancer is a heterogenous group of cancers so I may use the following terms in this post: Neuroendocrine Neoplasm (NENs) - a combination term for both well differentiated Neuroendocrine Tumours (NETs) and Neuroendocrine Carcinomas (NECs)…

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…

Tag: Cancer of unknown primary (CUP)