Month: March 2018

16Mar 2018 by Ronny Allan 4 Comments

Namaste Irrfan Khan – we are waiting for you

Awareness, Living with Neuroendocrine Cancer

Irrfan Khan, Indian actor and producer, well-known for movies, Slumdog Millionaire, Life of Pi, Jurassic World, The Amazing Spider-Man, was diagnosed with Neuroendocrine Cancer in 2018. What type of NET? Irrfan released information on 19 June 2018 indicating it was a high grade Neuroendocrine Cancer - although there is no detail of the 'differentiation' that would indicate a 'Neuroendocrine Tumour' (NET) or a 'Neuroendocrine Carcinoma' (NEC). There have been no confirmed reports about the primary location. Read his "Note from London" here Where is he being treated? Irrfan initially said he would be travelling "overseas" for treatment. Fox News (USA) said that "he hasn't elaborated on his treatment plan, though he did say he would be treated somewhere outside the U.S." This has been contradicted by other online sources in…

05Mar 2018 by Ronny Allan 4 Comments

RonnyAllan.NET – Community Newsletter February 2018

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Technical NETs

Another great start to the year in both NETs in the news and my social media activity. It's been really cold where I am though! I'm so busy with personal contacts, I decided to set up a chat room so that other people can help me answer some really difficult questions! This 'chat rom' is not designed to run like a traditional Facebook forum, it's a place to make people feel safe and to discuss without the usual distractions and dramas that people often encounter. And .... it's about learning. I welcome all types of NET, people from any country and I also welcome carers/caregivers and medical people (I already have a few of the latter). It's also a place where I will bring in expertise to chat about various…

I really like this video because it covers the positives of the coronavirus crisis, despite the daily gloom. At the time of writing, it’s clear things will get worse before they improve. However, this crisis will end sometime, hopefully soon; and we’ll look back on this period with multiple emotions. Of course we will be […]

My Self Isolation Diary – COVID-19

COVID-19 reminds me of some of the issues with Neuroendocrine Cancer e.g. is this a normal day to day cold/flu/chest issue or is it COVID-19? At least COVID-19 is the number one awareness topic in the universe so people are very very aware. Just as well because it has the potential to kill hundreds of […]

COVID-19 and Cancer Treatment and Surveillance

NEW CONTENT added 28 March 2020: See below for NET Specialist video regarding all issues with treatment and surveillance OPINION. My third article on the COVID-19 issue and based on the top topic currently in my private group – treatment and surveillance concerns over the period of COVID-19 restrictions. I have no answers, sorry. My […]

Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

OPINION. I guess many people are feeling pretty scared right now. Add age, a chronic disease, cancer, a lung illness or any condition that has a level of immunosuppression, and it seems to become even more scarier when you read the news. I think the ‘not knowing’ how this crisis is going to pan out […]

Coronavirus 19 (COVID-19): risks for cancer patients

This is not medical advice UPDATED 28 Mar 2020– see two links from Neuroendocrine Cancer UK (formerly NET Patient Foundation). First is a general summary of the effects of treatment in regard risk, second is a video from the Chair of UKINETS about NET patient concernes and the effects on treatment and surveillance. See Article […]

Neuroendocrine Cancer Nutrition Series Part 6 – featuring the 2020 video series by Tara Whyand RD

Nutrition is an important subject for many cancers but it is particularly important for Neuroendocrine Cancer. In the previous parts of this series I focused on the following: Article 1 – Vitamin and Mineral Challenges. This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietitian. This blog provides a list of vitamins and minerals which […]

Clinical Trial: Lu-177 DOTATOC (PRRT) in adult subjects with Somatostatin receptor (SSTR) positive Pulmonary, Pheochromocytoma, Paraganglioma, Unknown primary, and Thymic Neuroendocrine Tumors

Excellent news for those who don’t have Gastroenteropancreatic NETs (GEP-NETs). A trial of PRRT is being set-up for the less common types of NET incuding those with an unknown primary. Using the DOTATOC radionuclide rather then the Lutathera model of using DOTATATE, this trial will cater for Pulmonary, Pheochromoctyoma, Paraganlioma, Unknown Primary and Thymic Neuroendocrine […]

Oral Octreotide using RaniPill™

Rani Therapeutics, a leader in oral biologics, has announced positive results from the Phase I clinical study of its orally-delivered version of octreotide, Octreotide-RP, a drug used in the treatment of acromegaly and neuroendocrine tumors. The Phase I study successfully achieved both its primary and secondary endpoints, demonstrating the safety and tolerability of Octreotide-RP, the […]