August, 2018 - Ronny Allan - Living with Neuroendocrine Cancer

31Aug 2018 by Ronny Allan No Comments

RonnyAllan.NET – Community Newsletter Covering August 2018

Newsletters

[caption id="attachment_13604" align="aligncenter" width="959"] RIP Aretha Franklin - Neuroendocrine Cancer[/caption] Summary for August 2018 NET News Several headlines covering the past month: 1. The death of Aretha Franklin was a shock to her many fans around the world, including myself. I had no idea she was a Neuroendocrine Cancer patient. However, it would appear her death is being assigned as 'Pancreatic Cancer' mainly due to a rather clumsy statement from her physician. Despite the fact that her death certificate specifically confirms Neuroendocrine Cancer, we will be fighting a hard battle for years to come. The same thing happened with Steve Jobs, although I suspect we have now won that battle despite frequently news articles saying Pancreatic Cancer. Read about Aretha Franklin here and check out the link to her death…

30Aug 2018 by Ronny Allan 2 Comments

Detectnet™ (64Cu-DOTATATE) – an expansion of the Somatostatin Receptor PET Imaging for Neuroendocrine Cancer

Clinical Trials, Living with Neuroendocrine Cancer, Treatment

Edit 21st January 2021. The imaging time window of 64Cu-DOTATATE positron emission tomography/computed tomography (PET/CT) for patients with neuroendocrine neoplasms can be expanded from one hour to three hours post-injection, according to new research published in the January 2021 issue of The Journal of Nuclear Medicine. Read more here Edit 4th September 2020. 64Cu-dotatate now named Detectnet™ is approved for use by US FDA. Majority read revealed Detectnet had over 98% accuracy, 100% sensitivity, and over 96% specificity to confirm or exclude presence of disease. Read more here. Edit 14th July 2020. Expanded Access Program via clinical trial now recruiting - see below. The objective of this trial is to provide patients with confirmed or suspicion of NET access to Copper Cu 64 Dotatate for the detection, localization, and monitoring of…

16Aug 2018 by Ronny Allan 10 Comments

Aretha Franklin 1942-2018: Neuroendocrine Cancer

Awareness, Inspiration, Living with Neuroendocrine Cancer

On 16th Aug 2018, Publicist Gwendolyn Quinn told The Associated Press through a family statement that Franklin passed at her home in Detroit. The statement said "Franklin's official cause of death was due to advanced pancreatic cancer of the neuroendocrine type, which was confirmed by Franklin's oncologist, Dr. Philip Phillips of Karmanos Cancer Institute" in Detroit.Clearly, he meant Neuroendocrine Cancer with a pancreatic primary. However, in the fast-moving social media world, this is what went out with the lazier writers and editors abbreviating it to just Pancreatic Cancer. All of these incorrect posts will now be embedded in the bowels of the internet and used for years to come by those writing about the Queen of Soul. We in the Neuroendocrine community now have a much harder task because the…

14Aug 2018 by Ronny Allan No Comments

I wish I had another cancer

Awareness, Inspiration, Patient Advocacy

AN OPINION POSTI’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that).Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’. Ironically, although some cancers are almost certainly worse than others (for example in prognostic terms), it seems like a race to the bottom as patients fight for the ‘top’ spot. It works both ways as some people perceive they have…