September, 2022 - Ronny Allan - Living with Neuroendocrine Cancer

30Sep 2022 by Ronny Allan No Comments

Opinion: On Rare Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Awareness

On Rare Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Well, there are three main things wrong with Neuroendocrine Cancer awareness: 1. The incidence and prevalence of Neuroendocrine Neoplasms (the combination of Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)) have skyrocketed in the last 40 years to the point that many scientists, epidemiologists and Neuroendocrine specialists are starting to use different terminology, commensurate with the math. Read more by clicking here or on the picture below. Let's do the math not the myth. 2. Linked to the issue above, the community remains entrenched in 1907 terminology which needs bringing into 2021. Things have moved on so much but the use of this ancient terminology and what it infers just keeps us marking time in the last century.…

30Sep 2022 by Ronny Allan No Comments

Prospective Phase II Trial of Prognostication by 68Ga-NOTA-AE105 uPAR PET in Patients with Neuroendocrine Neoplasms: Implications for uPAR-Targeted Therapy

Clinical Trials

Summary A novel PET radiotracer can accurately assess the presence of a biomarker that indicates the level of tumor aggressiveness in neuroendocrine neoplasms (NENs). According to research published in the September issue of The Journal of Nuclear Medicine, the detection of the biomarker provides useful information for physicians to provide personalized care for patients with NENs and may also serve as a potential target for peptide radionuclide therapy (PRRT) for NEN patients.What is uPAR? Tumorigenesis (the production or formation of a tumour or tumours) is closely related to the loss of control of many genes. Urokinase-type plasminogen activator receptor (uPAR), a glycolipid-anchored protein on the cell surface, is controlled by many factors in tumorigenesis and is expressed in many tumor tissues. What is different about targeting uPAR instead of somatostatin receptors? uPAR expression…

28Sep 2022 by Ronny Allan 1 Comment

Living with cancer: 5 tips for facing things you can’t control

Inspiration, Patient Advocacy, Survivorship

I'm wired not to worry too much about something I cannot control. For example, I automatically ignore any concerns about being inside an imaging device and then having to wait for the results to come through. For me, I need to get the scan and I cannot control the results. The results will be what they will be, and I will react accordingly when I know them. I once wrote an article called "Scanxiety, I just don't get it". In hindsight, perhaps I was a bit harsh as not everyone is wired like me. However, perhaps presenting the reasons for my own way of handling these test and surveillance events might help others. So based on my own experience, here are my 5 tips to face things you cannot control. 5…

23Sep 2022 by Ronny Allan No Comments

A Study of CF33-hNIS (VAXINIA), an Oncolytic Virus, as Monotherapy or in Combination With Pembrolizumab in Adults With Metastatic or Advanced Solid Tumors (MAST)

Clinical Trials

A Study of CF33-hNIS (VAXINIA), an Oncolytic Virus, as Monotherapy or in Combination With Pembrolizumab in Adults With Metastatic or Advanced Solid Tumors (MAST)Neuroendocrine Neoplasms are considered solid tumours.Imugene Limited, a clinical-stage immuno-oncology company, and City of Hope, one of the largest cancer research and treatment organizations in the United States, today announced that the first patient was dosed in Phase 1 clinical trial evaluating the safety of novel cancer-killing virus CF33-hNIS VAXINIA when used in people with advanced solid tumors. The City of Hope-developed oncolytic virus has been shown to shrink colon, lung, breast, ovarian and pancreatic cancer tumors in preclinical laboratory and animal models.Interestingly, the principal investigator is listed as a NET Specialist. No conclusions should be drawn from this knowledge, and I have no information to suggest…

19Sep 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years

Inspiration, Patient Advocacy

Self Pity or Self Help? I'm not one for wallowing in self-pity or accepting invites to pity parties. It's not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don't lack empathy for others (my advocacy work is a testament to that) and I'm constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in the world because I'm known for helping. I admit that some people are beyond my type of help, but I always suggest they should speak to specialists in the area…

18Sep 2022 by Ronny Allan No Comments

Opinion: Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

Patient Advocacy, Survivorship

An opinion postCureI once wrote an article called "Neuroendocrine Cancer - can it be cured". In that article, I covered the fact that most stage IV cancers (all cancers) are generally considered incurable, but I also added my own view of NETs being treatable in the same way a chronic disease would be. At the other end of the scale, I covered guidelines where doctors talk about removing tumours with "curative intent", clearly in reference to small localized tumour scenarios. I'm pretty sure in my own mind that this does happen. As one example you only need to look at the epidemiology data on (say) small low-grade low-stage appendiceal and rectal NETs; to know that they rarely metastasise/recur, translated into guidelines as needing "no follow up" related to size and…

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…

12Sep 2022 by Ronny Allan No Comments

Lung nodules – something or nothing?

Living with Neuroendocrine Cancer, Patient Advocacy

BackgroundA focus on the issue of Lung nodules given I see these mentioned all the time in my online patient group, on many occasions by a worried newly diagnosed patient who has just been told this was found during diagnostic scans. Sometimes a lung nodule is also called a ‘pulmonary’ nodule and the two phrases mean the same thing.A lung nodule is an abnormal growth that forms in a lung. You may have one nodule on the lung or several nodules. Nodules may develop in one lung or both. Most lung nodules are benign (not cancerous). Only rarely, lung nodules are a sign of cancer in the lung. They can show up on imaging scans like X-rays or CT scans and are only found when doctors are checking for something…

10Sep 2022 by Ronny Allan 2 Comments

Awareness Post – Neuroendocrine Cancer in children and adolescents

Awareness, Inspiration

September is Childhood Cancer Awareness Month! The newspapers and social media will no doubt be featuring many children's cancer articles. I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available. In 2020. this case came up in my google alerts and was related to a family who live not far from me in the south of England. An 8-year-old with Paraganglioma had lost an eye due to the location of the tumour. It is absolutely heartbreaking to read but it's amazing how resilient children can be. The Facebook…

05Sep 2022 by Ronny Allan 2 Comments

Eat that doughnut!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy

I was recently reminded of a post I wrote called "The Other 5 Es". I later changed the name to "The 6 Es". The reason I wrote that post was due to the blanket use of something called "The 5 Es of Carcinoid Syndrome" in my private group. Taking this out of context can lead to unnecessary worry and constraints for many.I laughed out loud when I saw the reminder from my Facebook where I introduced this new blog post and it simply read "Eat that doughnut". What I didn't confirm was that I was using a metaphor. I was inferring that we shouldn't unnecessary restrict our lives when something is low risk, particularly when something we are told is a 'no no' has been said out of context and…

04Sep 2022 by Ronny Allan No Comments

Thyroid nodules – something or nothing?

Patient Advocacy

I came across this excellent summary of Thyroid nodules from the American Association of Endocrine Surgeons which links to a similar European one. It confirms much of what I wrote in my blog post "Troublesome Thyroids" in regard to my own thyroid issues. I'm thankful to the AAES for promoting this on social media. I wanted to focus on the issue of Thyroid nodules given I see these mentioned all the time in my online patient group. Clearly, when you already have a cancer diagnosis, the discovery of more issues on top of that is of concern to patients. Many are incidental and only found because of imaging following the cancer diagnosis. This is an important point because an average of more than 50% of people over the age of 60 have…

01Sep 2022 by Ronny Allan No Comments

Management of asymptomatic sporadic non-functioning pancreatic neuroendocrine neoplasms no larger than 2 cm: interim analysis of prospective ASPEN trial

Clinical Trials, Treatment

One of the most controversial subjects in Neuroendocrine Neoplasms is the management of small non-functional (asymptomatic) pancreatic NETs (NF-PanNEN). In the most general terms, surgery is not recommended in tumours less than 2cm. Allowances are made for those who are functional (i.e. symptomatic with one of several syndrome possibilities) or where the tumour is threatening important vessels (i.e. pre-emptive surgery). Normally watching and waiting is recommended. I wrote more detail in an earlier blog - Pancreatic Neuroendocrine Tumours - to cut or not to cutSome patients opt (or push for) a non-guideline surgery regardless and as one other patient advocate put it, "they will surgeon shop until they find one who will do it". While the guidelines are just that (guidelines), decisions on surgery in such cases must be carefully considered…