Lung Cancer - Ronny Allan - Living with Neuroendocrine Cancer

26Aug 2023 by Ronny Allan 1 Comment

Phase 3 CABINET Clinical Trial – Cabozantinib for Advanced Neuroendocrine Tumours

BREAKING NEWS - 24TH AUG 2023Exelixis Announces Remarkable Efficacy in CABINET Trial for Advanced Neuroendocrine TumorsOn August 24, 2023, Exelixis made an exciting announcement regarding the Phase 3 CABINET pivotal trial. This trial focused on evaluating the effectiveness of cabozantinib in treating advanced pancreatic and extra-pancreatic neuroendocrine tumors. The CABINET trial was a significant undertaking, involving multiple centers and enrolling a total of 290 patients who were divided into two groups.The trial progressed smoothly, but to everyone’s surprise, it was stopped early. The reason for this premature conclusion was the remarkable improvement in efficacy observed. The Alliance for Clinical Trials in Oncology independent Data and Safety Monitoring Board unanimously recommended ending the trial due to these unprecedented results."CABINET trial will be unblinded and stopped early due to a dramatic improvement…

12Aug 2023 by Ronny Allan 2 Comments

Lung cancer diagnosed early because of new tool

Clinical Trials and Research, Patient Advocacy

I'm a believer in science overtaking mortality figures and there is evidence of that already happening when you read the latest survival figures. But too many are still succumbing to this killer disease. I also believe that artificial intelligence (AI) has the potential to help. Even with cancers of the lung, where known causes are heavily linked to death rates, are decreasing but that is mainly due to preventative measures such as stopping smoking. However, not all cancers of the lung are caused by smoking. Most low-grade Lung NETs is a good example, there are others. I've had a flurry of initiatives appear in my inbox in the last month or two and wanted to document those here. These may not have an impact on you currently but a sign…

18Jul 2023 by Ronny Allan 1 Comment

A person with Cancer fell into a hole and couldn’t get out……….

Awareness, Patient Advocacy, Survivorship

A person with Cancer fell into a hole and couldn’t get out. As a colleague walked by, the person called out for help, but the colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper.A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket adding to the tools available. The person used the tools to dig the hole deeper still and filled the bucket.A healthcare professional walked by. The person called, “Help! I can’t get out!” so the healthcare professional gave the person some drugs and said, "Take this it will…

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…

24Aug 2019 by Ronny Allan 1 Comment

The Case of Justice Ruth Bader Ginsburg vs Cancer

Awareness

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email UPDATE 18th SEPTEMBER 2020RIP Justice Ruth Bader GinsburgUPDATE 17 JULY 2020Justice Ruth Bader Ginsburg said Friday that she had had a recurrence of cancer but had been undergoing chemotherapy that had shown “positive results”. Justice Ginsburg, who is 87, said she had begun a course of chemotherapy on May 19, after a periodic scan in February followed by a biopsy revealed lesions on her liver. She also stated that "Immunotherapy" first essayed proved unsuccessful, but the chemotherapy course is yielding positive results. She said a scan this month showed the liver lesions had been significantly reduced and that she is tolerating chemotherapy well. Justice Ginsburg did not say where the tumours…

03Sep 2018 by Ronny Allan 17 Comments

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

Now the dust has settled on the death and funeral of Neuroendocrine Cancer patient Aretha Franklin, the community needs to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and including doctors.About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the Neuroendocrine Type". Her death certificate quoted "Pancreatic Neuroendocrine Cancer". Despite this, the media outlet that published her death certificate still led the article with the headline "Pancreatic Cancer". Exactly the same thing happened with Steve Jobs and a few others. And that's only the ones we know about - how many other pe0ple are being labelled and documented with the wrong cancer type?I…

11Sep 2017 by Ronny Allan 7 Comments

Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

Awareness

BackgroundWhen you look at how cancer is classified and broken down, you can see why Neuroendocrine Neoplasm (the overarching term for Neuroendocrine Tumour and Neuroendocrine Carcinoma) often appears unlisted in certain websites and in certain clinical publications and press releases. Moreover, it robs awareness and funding for Neuroendocrine Cancer organisations, particularly when celebrities are involved in incorrect labelling. Below, I wanted to cover why that sometimes happens but also why that is undeservedly detrimental to Neuroendocrine Cancer awareness.Cancer CategoriesFrom a histological standpoint, there are hundreds of different cancers, which are grouped into six major categories:CarcinomaSarcomaMyelomaLeukemiaLymphomaMixed TypesYou may be like me and wondering where Neuroendocrine Tumours fit into these 6 types? Clearly, they must be somewhere inside Carcinoma ...... and that must refer back to the Oberndorfer "Carcinoma-like" term, something which is…

13Jun 2016 by Ronny Allan 4 Comments

Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch

Awareness, Treatment

[caption id="attachment_6231" align="aligncenter" width="500"] IORT[/caption] New treatments seem to be appearing every month and that is good news for patients. I have a personal connection to this one though. In 2014, Chris and I walked along Hadrian's Wall, a 2,000-year-old World Heritage structure in Northern England. This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals). It is the first ever deployment of this type of treatment in UK and Chris and I were happy to shred the soles of our feet to support this worthy cause, particularly when the two guys behind the idea were my surgeon (Mr Neil…

28Jan 2016 by Ronny Allan 4 Comments

Innovation at Royal Free – Lung Biopsy and Radio Frequency Ablation Service

Treatment

[caption id="attachment_4852" align="alignleft" width="301"] Image with permission from Dr Sam Hare (www.lungdiagnosis.com)[/caption] A team of radiologists and respiratory consultants who introduced a new and more efficient lung biopsy method at Barnet Hospital London, has been named the winner of the NHS Innovation Challenge Prize in the ‘cancer care’ category. Barnet Hospital is run by the Royal Free London NHS Foundation Trust which is well known for its Neuroendocrine Cancer Centre of Excellence. Not happy with this, they've now gone on to introduce a new service combining this innovative biopsy system with Radio Frequency Ablation (RFA) of tumours in the same procedure. Combined Biopsy with Radio Frequency Ablation (RFA) This new service has significant advantages for those who have localised tumours less than 3cm and can't for whatever reason have surgery. I've checked with…

01May 2015 by Ronny Allan 34 Comments

Neuroendocrine – what’s that?

Awareness, Patient Advocacy

Neuroendocrine??? what's that! I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?". Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again!Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again 'Neuro' was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most…

10Feb 2015 by Ronny Allan No Comments

Turning a negative into a postive

General

[caption id="attachment_2625" align="alignleft" width="400"] Lung Cancer Breathalyser[/caption] Interesting piece in the news today and there's an amazing story behind it. The "Lung Cancer Breathalyser" is not a new technology but following the death of his wife from advanced colon cancer, inventor Billy Boyle has produced something good enough to have been accepted on a trial basis by the NHS. If successful, it has the potential to save thousands of lives. Lung Cancer is a big killer and the survival rate at Stage 4 is around 5%. Let's hope this invention works. When I was reading the article, I immediately recognised his wife as a blogger I was following and who died on Christmas day after fighting advanced colon cancer for 2 years. Her final and penultimate blogs are very inspiring and worth reading. Her…

03Nov 2014 by Ronny Allan 32 Comments

The Human Anatomy of Neuroendocrine Cancer

Awareness

OPINION. Sometimes when I'm searching for cancer information, I'm presented with a 'picklist' of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be! Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding. One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or breast cancer where the primary can be found in the breast, NENs arise from a cell type which can be present more or less anywhere in the body. Ignorance of…

Tag: Lung Cancer