Cancer blogs and Websites run the gambit from highly emotional personal stories to highly technical reviews of drug trials and scientific studies. Multiple myeloma sites are no different. After my initial diagnosis, I soon became frustrated by the lack of technical information available in books or on the Internet. That is why I wrote my first book, Living with Multiple Myeloma–so others might find answers to their questions more easily than I could. But now I believe we are in danger of going over-board. I am guilty of this on this site as well. There are so many ongoing studies, so many clinical trials, so many new, exciting drugs on the horizon it is hard to keep up. Add natural and alternative options and you have a big, fat mess! I just read two sites today that were so technical I couldn’t understand what they were talking about and I’ve written a book about myeloma! I just think we can over-analyze this thing. It’s cancer. There is a physical, spiritual and emotional component to such a serious, life changing/threatening diagnosis. All of these aspects are important. If we get too hung-up on the numbers, I am concerned the myeloma community will lose sight of the big picture. Please remember the majority of myeloma patients don’t even read blogs. Most are older and many are in poor health. I have been criticised (constructively and in a nice way, of course!) for not including enough inspirational stories about our fellow myeloma patients and families. I am starting to think these readers have a point! The only reason I write about the “alphabet soup” we call myeloma drugs in clinical trials (you know, like NPI-0052, MLN-4924 and MLN-9708) so often is to give my fellow patients hope! Hope that the cavalry is on the way! That new, more effective drugs with fewer side-effects will be available soon. I would like to continue with this thread, this topic tomorrow. Time to eat my grilled salmon and steamed broccoli!
Feel good and keep smiling! Pat