Merkel cell carcinoma Archives

03 Oct 2024

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A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient AdvocacyBlue Book, Differentiation, Grading, High grade neuroendocrine neoplasm (NEN), High grade neuroendocrine tumour (NET), Ki-67, Large cell neuroendocrine carcinoma (LCNEC), MANEC, Merkel cell carcinoma, Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN), Molecular markers, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Poorly differentiated, Small cell lung cancer (SCLC), Small cell neuroendocrine carcinoma (SCNEC), Somatostatin receptors (SSTR), Well differentiated

Reviewed and updated 3rd Jan 2025 High 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. …

03 Sep 2023

By Ronny Allan

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Jimmy Buffett 1946-2023 – Neuroendocrine Carcinoma (Merkel Cell Carcinoma)

AwarenessHigh Grade NEC, Merkel cell carcinoma, Neuroendocrine carcinoma (NEC)

US singer-songwriter Jimmy Buffett, best known for his 1970's hit Margaritaville, died aged 76. "Jimmy passed away peacefully on the night of September 1 2023 surrounded by his family, friends, music and dogs," said a statement on his website. Picture credit jimmybuffett.com The cause of death has been given as Merkel Cell Carcinoma, a type of Neuroendocrine Carcinoma of the skin. Read more about Merkel Cell Carcinoma on Dana Farber - click here Many people in US and elsewhere will have heard of Jimmy and love his music. I vividly remember going into the Jimmy Buffett's Margaritaville in Universal Orlando…

12 Sep 2020

By Ronny Allan

1 Comment

Clinical Trial of Tidutamab in Neuroendocrine Cancer (DUET-1)

Clinical Trials and ResearchImmunotherapy, Merkel cell carcinoma, Monoclonal antibodies, Neuroendocrine tumour (NET), Small cell lung cancer (SCLC), Targeted therapy, Tidutamab

UPDATE: 13th July 2022Xencor halted this clinical trial due to disappointing results. Click here to read moreXencor, a clinical-stage biopharmaceutical company developing engineered monoclonal antibodies for the treatment of cancer and autoimmune diseases, today announced that initial data from its ongoing Phase 1 dose-escalation study of tidutamab (XmAb®18087), an SSTR2 x CD3 bispecific antibody, in patients with neuroendocrine tumors (NETs) will be presented during the upcoming North American Neuroendocrine Tumor Society’s 2021 Multidisciplinary NET Medical Virtual Symposium (note - it was also presented at NANETS 2020). What are monocloncal antibodies? See here About Tidutamab Monoclonal antibodies are laboratory-produced molecules engineered to…

24 Sep 2019

By Ronny Allan

1 Comment

Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials and ResearchAdvanced neuroendocrine cancer, Carcinoid tumour, Clinical trial, Incurable cancer, Medullary thyroid cancer (MTC), Merkel cell carcinoma, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Paraganglioma, PEN-221, Pheochromocytoma, Small cell lung cancer (SCLC), Somatostatin receptors (SSTR)

What is PEN-221?Tarveda Therapeutics is discovering and developing a new class of potent and selective precision oncology medicines for the treatment of patients with various solid tumor malignancies. Their strategy includes developing their own proprietary Pentarin miniature conjugates to enhance the effectiveness of promising anti-cancer payloads that have struggled without their selective targeting to solid tumors. These medicines are known as 'Pentarins'. PEN-221 is the lead candidate 'Pentarin' aimed at Neuroendocrine Cancer - PEN-221.Somatostatin receptor 2 (SSTR2) is frequently overexpressed on several types of solid tumors, including neuroendocrine tumors and small-cell lung cancer. Peptide agonists of SSTR2 are rapidly internalized…

20 Nov 2017

By Ronny Allan

5 Comments

Living with Neuroendocrine Cancer – the 7 Year Itch

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Allergies, Atopic dermatitis, Bradykinin, Carcinoid syndrome, Eczema, Food allergy, Gastrinoma, Glucagonoma, Histamine, Hormones, Lanreotide, Lung NETs, Malabsorption, Mastocytosis, Merkel cell carcinoma, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Octreotide, Pheochromocytoma, Quality of LIfe (QoL), Rash, Rosacea, Serotonin, Somatostatin analogues, Substance P, Tachykinin, Zollinger-Ellison Syndrome

I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery. It had taken 12 days for me to feel strong enough to venture onto social media with a simple message "I'm feeling perkier". For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed. I guess I met some of these descriptors most…

05 Jul 2017

By Ronny Allan

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NewslettersAdvanced neuroendocrine cancer, Carcinoid tumour, Everolimus, Incurable cancer, Merkel cell carcinoma, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Paraganglioma, Pheochromocytoma, PRRT, Serotonin, Sunitinib (Sutent)

Hi NETworkers! Welcome to my monthly 'Community' newsletter. This is June 2017's monthly summary of Ronny Allan's Community news, views and ICYMI (in case you missed it!). NET News The following news items may be of interest: NETs in the UK National News. Great publicity. Featuring NET Patient Foundation. Click here. Personalised PRRT is highlighted. Click here. Everolimus and Sunitinib. In England, NICE approves Everolimus (Afinitor) and Sunitinib (Sutent). Read more by clicking here. Videos from LACNETS. I've not watched them all yet due to holiday but they are always great! Click here. PRRT. News of a PRRT trial being…

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