I like reading the words of Dr Mark Lewis, an Oncologist and a Neuroendocrine Tumour (NET) patient himself (with MEN1). He always delivers with “enthusiastic vigour”, a term he reduces to “brio” which I then googled! His article as usual sets a scene and he has form for looking back in the history of NETs. I’m […]
I see a lot of emotional and anxiety issues in my private group. I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population. Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought […]
Opinion Post I’ve lost count of the number of diet related questions I receive online or are posted in my private Facebook support group. The question is normally worded along these lines: “What should I be eating if I have Neuroendocrine Cancer”. The answer is almost impossible. Here are a few of the reasons why […]
Lutetium 177Lu-Edotreotide Versus Best Standard of Care in Well-differentiated Aggressive Grade-2 and Grade-3 GastroEnteroPancreatic NeuroEndocrine Tumors (GEP-NETs) – (COMPOSE) is a new trial commencing September 2021. Brief Summary of the COMPOSE trial: This is an Open-label, Multicentre Study. Its purpose is to evaluate the efficacy, safety & patient-reported outcomes of peptide receptor radionuclide therapy (PRRT) […]
When I see a trial for Gastroenteropancreatic NETs (GEPNETs), I know that BP (Bronchopulmonary) NETs (includes Lung) are not included. When you look at the approval wording for the major treatments in use (PRRT Lutathera, Lanreotide), they appear to use the term GEPNETs making BP NETs the poor relative. Clearly there’s highly complex reasons why NETs […]
Interesting that Jobs was experiencing kidney stones. I just experienced my first stone this week after 18 years with NET. Hoping that is not indicative of spread to the pancreas.
Kidney stones are pretty common with multiple causes. I have a small one forming 7mm. Small intestine NET.
According to NHS
do not drink enough fluids
are taking some types of medication
have a medical condition that raises the levels of certain substances in your urine
I don’t drink enough water!
How can I read your Amazing yellow book? Is it on line or for sale? I am so very grateful for you and your contributions. Please know we appreciate all you do. Sincerely, Patty Walker (10 years with nets – discovered on ovaries)
It’s linked but to here (bits are out of date)
https://ronnyallan.net/wp-content/uploads/2016/11/wh11healthnetv2242.pdf