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

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

Awareness
US singer-songwriter Jimmy Buffett, best known for his 1970's hit Margaritaville, has died aged 76. "Jimmy passed away peacefully on the night of September 1 surrounded by his family, friends, music and dogs," said a statement on his website. 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 Resort CityWalk and found his music very pleasant to listen to. RIP Jimmy, your name and music lives on! https://youtu.be/ohDqjRGqpIU Disclaimer I am not a doctor or any form of medical professional, practitioner…
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Clinical Trial of Tidutamab in Neuroendocrine Cancer (DUET-1)

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

Clinical Trials and Research
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 serve as substitute antibodies that can restore, enhance or mimic the immune system's attack on cancer cells. They are designed to bind to antigens that are generally more numerous on…
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Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials and Research
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 upon binding to the receptor and linking a toxic payload to an SSTR2 agonist is a potential method to kill SSTR2-expressing tumor cells. PEN-221 is a conjugate consisting of microtubule-targeting…
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A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

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…
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Rosacea – the NET Effect

Rosacea – the NET Effect

Awareness, Patient Advocacy, The NET Effect Series
Around 2001, I started noticing some issues on my nose, particularly around the creases, an issue I still experience today. It normally starts with a stinging feeling, an indication I'm about to experience some sort of inflammation. What eventually happens is something which looks like a 'whitehead' which I now know to be a 'pustule'. Sometimes there are multiples, and most are not normally bigger than 2mm, mostly smaller. These pustules nearly always disappear within a short period of time, normally after washing/showering, but they tend to leave reddish marks which eventually fade. Very infrequently, these pustules would appear on my chin. My nose is slightly discoloured and more reddish than the rest of my face since the issue started.Shortly after I started experiencing this issue, a doctor diagnosed me…
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Living with Neuroendocrine Cancer – the 7 Year Itch

Living with Neuroendocrine Cancer – the 7 Year Itch

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 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 of the time! I had gotten through the worst and…
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NETwork with Ronny © – Community Newsletter JUNE 2017

NETwork with Ronny © – Community Newsletter JUNE 2017

Newsletters
  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 set up for Inoperable Pheochromocytoma/ Paraganglioma. Not yet recruiting but read more here. Immunotherapy.  Merkel Cell Carcinoma is already benefiting from an FDA approved drug with another pending.  Check out…
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