My days are filled with cancer this week–and NET cancer in particular. Monday, the Herald News piece on our Marathon Walk effort ran. That same day a friend lost her mother to another, but equally nasty, cancer. Yesterday we put the finishing touches on a direct mail letter, designed a t-shirt, reached an agreement on our Marathon Walk team, and the Herald News posted a video of me talking about the Marathon Walk.
This morning I tried to get a training walk in but quickly gave that up when I saw that it was already 85 at 7 a.m. We will not discuss the humidity–which made every step feel like I was doing it under water.
Later I met for two hours with two
members of our press group to talk about this year’s press kit for NET Cancer Awareness Day on November 10. While we will be doing some follow-ups on stories from last year ,we hope to have two blockbuster pieces–one of which will be fairly light but the other of which will attempt to answer some difficult questions. I won’t go into detail on any of those pieces at this point because in the news business you never know which stories will pan out and which won’t. But I hope to whet your appetite somewhat.
I am continuing to work my way through the latest presentations and research and later this afternoon will post a link to the slides of Dr. Matt Kulke’s presentation at the New England Carcinoid Connection Patient Conference in June. He presented some interesting information at the conference about where we are in terms of diagnosis and treatment for NET/CS–and did a great job of putting that information into laymen’s terms.
That said, I am increasingly concerned that the science is getting harder and harder to follow–especially for those who are new to NET. I am going to try to change that in the weeks ahead by writing a weekly summary of what I have learned about NET in the preceding seven days. I’ll be trying to put things in terms the average person will understand. But my training is as a journalist not as a doctor and those summaries will be just that: summaries.
I think it is important that we all have a general idea what is going on in the laboratories around the country. But what I write is not intended to be definitive–and I do not intend it to be taken as medical advice. You may raise something with your doctor you read in those pieces but you both need to make medical decisions based on the full research findings, not a layman’s summary intended for a general audience.
Please also remember that promising results in Phase I and Phase II trials are more important to researchers than they are generally to patients. Those studies are done on very small groups of patients. All too frequently those promising early results vanish in the considerably larger Phase III trials.
As I have learned too well from watching my parents whip-sawed by promising early results in Alzheimer’s trials, one should never get too excited about the efficacy of anything new.
