Small cell lung cancer (SCLC) - Ronny Allan - Living with Neuroendocrine Cancer

17Feb 2023 by Ronny Allan No Comments

A Phase II Clinical Trial of Nivolumab and Temozolomide for Neuroendocrine Neoplasms

What is Nivolumab (Opdivo)Nivolumab is a type of cancer treatment drug called an immunotherapy. It is a treatment for a number of different types of cancer. You might have it as part of a clinical trial for other types of cancer.What is Temozolomide (Temodal)Temozolomide is a type of chemotherapy. It is well known in Neuroendocrine Cancer as the TEM in CAPTEMTrial SummaryThe purpose of the trial. Treatment options are sometimes limited in patients with metastatic neuroendocrine neoplasms (NEN). The primary endpoint was response rate (using RECIST 1.1). Secondary endpoints included progression-free survival (PFS), overall survival (OS), and safety. Immune profiling was performed by mass cytometry to evaluate the effect on peripheral blood immune cell subsets."In summary, the combination of temozolomide and nivolumab showed promising activity in NEN, especially in lung…

02Feb 2023 by Ronny Allan No Comments

RonnyAllan.NET – Summary of January 2023 – Ronny Allan – Living with Neuroendocrine Cancer

Newsletters, Patient Advocacy

SummaryGreat start to 2023 and I thank those who continue to support my social media and this blog. I'm keen to hear any suggestions of the sort of thing you would like me to research and publish.The top 10 most-read posts in January are listed below:Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patientThe Masters Snooker competition was held in January 2023 and there was a tremendous spike in views at the time of the final. The Masters Trophy was named the Paul Hunter trophy, and this incidentally generates a vast amount of awareness for Neuroendocrine Cancer as most of the hits come from outside the Neuroendocrine community. Click here or on the picture.[caption id="attachment_19993" align="aligncenter" width="416"] Click picture to read more[/caption]Cancer AblationA popular post with the headline of…

29Jan 2023 by Ronny Allan No Comments

Dustin Diamond

Awareness

I'm behind the curve on this one after being ahead on celebrities such as Steve Jobs, Aretha Franklin, Wilko Johnson and Olivia Williams. But in my defence, Dustin Diamond was not that well known in UK. I noticed his name mentioned in relation to "Neuroendocrine" in early 2023. I set about searching and it didn't take me long to make a connection. BUT .... this is much more complex than the cases above despite the misinformation which followed in all of these cases due to the use of anatomy to name cancers. This appears to be a common issue, particularly as it is the language used by doctors and the press to simplify the complexity to which I refer above; and will outline below. Who is Dustin Diamond Dustin Neil…

14Sep 2022 by Ronny Allan No Comments

Clinical Trial: Phase 1b/3 Targeted Alpha-Emitter PRRT RYZ101 (Ac225)

Clinical Trials

Update 21st March 2023 - RayzeBio Completes Phase 1b Enrollment in ACTION-1 Study, Evaluating RYZ101 (Actinium-225 DOTATATE) in Neuroendocrine Tumors -- 17 patients were enrolled at the highest dose and no dose limiting toxicities (DLTs) were observed -- RYZ101 positioned to be the first approved Actinium-225 radiopharmaceutical therapy for the industry Author's note: Please note this is an evaluation phase, the full trial will eventually progress with up to 218 participants.What is Alpha-emitter PRRT? Substitution of an alpha emitter (e.g. ²¹²Pb) for the beta emitters currently being used (i.e., 177Lu or 90Y) will provide significantly higher Linear Energy Transfer (LET) and a shorter path length. Higher LET particles should cause more tumour cell death. Shorter path length should result in less collateral damage of the normal tissue and therefore less side…

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…

03Mar 2022 by Ronny Allan No Comments

A Spotlight on Lung Neuroendocrine Neoplasms

Awareness

WHO Classification of Tumours, 5th Edition, Volume 5: Thoracic TumoursThe aim of this spotlight is to provide a summary of the latest information on Lung Neuroendocrine Neoplasms (NEN) including the latest terminology, epidemiology data, and guidelines. This follows the publication of the Thoracic WHO classification 5th edition (2021): terminology and criteria for neuroendocrine neoplasms (Blue Book). This book has been anticipated to see if the panel compiling this follows the lead of the Gastroenteropancreatic Neuroendocrine Neoplasms (GEPNEN) editions issued in 2017 (Endocrine) and 2019 (Digestive systems) by removing the antiquated misnomer term ''Carcinoid" in line with the recommendations made by senior NEN doctors in 2020 to have commonality across all blue books. Neuroendocrine neoplasm update: toward universal nomenclature © 2020 Society for Endocrinology 2020, Guido Rindi and Frediano Inzani.I can tell…

12Sep 2020 by Ronny Allan 1 Comment

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

Clinical Trials

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…

24Sep 2019 by Ronny Allan 1 Comment

Clinical Trials – PEN-221 for Neuroendocrine Cancer

Clinical Trials

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…

09May 2019 by Ronny Allan 5 Comments

The Heterogeneity of Grade 3 (High grade) Neuroendocrine Neoplasms

Awareness, Patient Advocacy

Reviewed and updated 14th March 2022High Grade - 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 the term…

28Sep 2017 by Ronny Allan 19 Comments

Ever wonder what caused your Neuroendocrine Cancer?

Patient Advocacy

OPINION. When you're diagnosed, you go through a whole host of emotions. It's not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words "you have cancer", it's other stuff such as anger and denial. With the latter, the denial normally wears off as you finally accept the predicament.In hindsight, the anger is interesting because there can be a mixture of thoughts including "why me", "what could I have done to head this off"; and would you believe I was even angry that my diagnosis was going to affect my performance at work and even my personal credibility. We all react differently but in general terms our experiences can be categorised into 3 main areas: initial reaction, distress and then adjustment.Initially, I was frustrated I didn't…

07Jul 2015 by Ronny Allan 30 Comments

Neuroendocrine Neoplasms – not as rare as you think

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

UPDATE AS AT 21 JAN 2023 - a leading US cancer organisation accepts that NETs are not rareI don't like to gloat, but this post is heading for its 8th birthday. UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type. Several NET specialists in USA have been more vocal (see some graphic quotes below) than the cancer organsiations (including the ones who represent us) and disappointingly "carcinoid" use is still rife in that part of the world. Let's hope they will now get on with moving to the new paradigm I've been suggesting for a long time.Read more in the "Meanwhile in USA" section.BackgroundAlthough initially considered rare tumours up until 10 years ago, the most recent data indicates the incidence of…