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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation) It’s well known that Neuroendocrine Cancer can often be a difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed. I’m one of the lucky ones, even though I still ended up with distant metastases. […]
Haringey Council in London has signed up to raise awareness of Nets, this needs to be on a bigger platform to explain the difference and help to prevent confusion.
What’s needed is a high level debate on prime-time TV at about pNETs vs pancreatic cancer. If these famous actors and doctors like the Mayo oncologist who has it would come on board then awareness would be raised. Just need a contact in the BBC who knows someone with it to organise it. I live in Australia but I wrote to Boris and the UK Health Minister etc etc re: 2019 World NET Cancer Day but because of Brexit no one responding 🙂
Try again in 6 months! Not sure knowledge is the issue. The issue is doctor parlance which is then mimicked by the media without any context. Doctors are part of the problem.
So frustrating!
A good article, and can totally relate to the ‘I told you I was ill’, but once again they focus gets shifted to the organ type rather than the cancer type, so frustrating…
Oh God, not again! More harm than good can be done by the confusion and lack of rigour. It’s a bit like saying gastroenteritis and dysentery are the same disease. And yes, like macherie48, I think it would be a good idea to contact her. Onwards!
Contact her Ronny. I felt that ‘here we go again confusion’. Thanks for sharing.