July, 2022 - Ronny Allan - Living with Neuroendocrine Cancer

28Jul 2022 by Ronny Allan 1 Comment

The trouble with the NET is that it can spread ……. false hope

Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer and how to treat it can lead to needless worry and even hinder good prevention and treatment decisions. Even food and nutritional supplements fall into this area. I see these things frequently in my own community, I don't like and I try my hardest to avoid these myths appearing in my patient group and on my public pages. Annoyingly, some of it comes from unsuspecting patients who are simply sharing it from another place. People need to think carefully before sharing this sort of thing. It's…

27Jul 2022 by Ronny Allan No Comments

Survival Outcomes in Metastatic Gastroenteropancreatic Neuroendocrine Tumor Patients receiving Concomitant 225Ac-DOTATATE Targeted Alpha Therapy and Capecitabine: A Real-world Scenario Management Based Long-term Outcome Study

Clinical Trials

Introduction I've written about both 225Ac-DOTATATE targeted alpha therapy (TAT) and Capecitabine before but never as a concomitant pair (combo). So, when this Indian study came up on my radar, I felt it was a useful addition to my website adding to my existing targeted alpha therapy portfolio of information. India appears to be using more of this type of PRRT than any other country. Read more about targeted alpha therapy by clicking here or on the photo below. [caption id="attachment_12014" align="aligncenter" width="1024"] Click on the photo to read[/caption] Read more about Capecitabine (combo with Temozolomide) by clicking here or on the photo below. [caption id="attachment_33477" align="aligncenter" width="640"] Click on the photo to read[/caption] The abstract from the Indian study is posted and cited below. Abstract Rationale: Although the short-term results…

26Jul 2022 by Ronny Allan 14 Comments

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship

I finally made 12 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 47 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes, and settled in my liver and beyond including, strangely, in my left armpit. It was incurable. And, unique to serotonin secreting Neuroendocrine Tumours, it had caused a dense fibrotic reaction…

24Jul 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: turn surveillance into a positive

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance (scans and other imaging, tests, etc) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more worrying situation in my opinion. Surveillance is meant in the widest context, it can range from a telephone appointing asking questions and getting answers, all the way through to scanning. Don't…

20Jul 2022 by Ronny Allan No Comments

Assessment of Clinical Response Following Atezolizumab and Bevacizumab Treatment in Patients With Neuroendocrine Tumors: A Nonrandomized Clinical Trial

Clinical Trials

BackgroundWell differentiated NETs have been described as an "immunological desert" in recent years mainly due to the poor response rate data coming out of clinical trials of immunotherapy drugs. Poorly differentiated NEC has favoured better but mainly in the more obscure types. Which is why these data of a combo treatment containing one immunotherapy drug caught my eye. What is atezolizumab? It is a type of monoclonal antibody and a type of immune checkpoint inhibitor. It's a Programmed cell death protein -1 (PD-1)/ Ligand 1 (PD-L1) inhibitor. A drug that binds to the protein PD-L1 to help immune cells kill cancer cells better and is used to treat many different types of cancer, including cancers that express PD-L1. Atezolizumab is used alone or with other drugs to treat certain types of…

19Jul 2022 by Ronny Allan 3 Comments

Neuroendocrine Cancer: diagnostic dilemmas in July 2010

Awareness

Every July, I think back to my diagnosis of advanced Neuroendocrine Cancer in 2010. I guess one of the reasons I do this is to be thankful that I'm still alive but also, I have a sneaking suspicion that I'm still trying to remember small detail from that period. It had felt surreal ever since 8th July when the secondary care investigating doctor sent me for a CT scan leading to a biopsy on 19th July. That scan was to uncover some shocking detail of what had been going on inside my body, with no grand announcement, just something chipping away over the years. My diagnostic triggers were incidental in many ways and a reaction to me telling a GP Nurse that I thought I'd lost a bit of weight. I…

17Jul 2022 by Ronny Allan 3 Comments

CT scan findings in the COVID era: Ground Glass Opacities (GGO)

Patient Advocacy

The COVID-19 pandemic filled our vocabularies with more medical terms than most of us would ever hear about, but some were familiar. It soon became clear that CT scans were a useful tool to check for COVID-19. One 2022 study showed that COVID-19 shares some features with other viral types of pneumonia, despite some differences. They commonly present as "ground glass opacities" (GGO) along with vascular thickening, air bronchogram and consolidations. Also, they differ by age, disease severity, and outcomes among COVID-19 patients. GGOs refer to findings CT scans of COVID-19 patients that can help diagnose and monitor the infection. A similar study published early on in the pandemic came up with similar conclusions in regard the presentation on CTs of the chest. Another study said that while it's important…

12Jul 2022 by Ronny Allan 2 Comments

Me and the other big C – June/July 2022

Living with Neuroendocrine Cancer, Survivorship

Recently, Chris and I felt lucky not to have caught covid since the pandemic started in early 2020. That said, not that we would know in the early days before tests were available. We both had bad colds/flu in March 2020 but we will never find out if that was covid or not. I wrote about this experience in a diary I maintained over that period. It was therefore a bit of a shock when both of us finally tested positive in the middle of 2022, despite surviving unscathed through several waves since the pandemic began in early 2020. To this day, we (mostly me) remain slightly paranoid about protecting ourselves. e.g. I have maintained the habit of not touching door handles with my bare hands to this day. My…