Yesterday I wrote: “It is from this perspective I will share my anecdotal evidence and observations about the unreliable and inaccurate median life expectancy numbers most multiple myeloma patients face when they are diagnosed today.”
So here it is: There are no numbers. No one likes to hear this—even though it is good—no—very good news! As I shared in my first book, Living with Multiple Myeloma, When I was diagnosed in the spring of 2007, the average life expectancy for a Stage II multiple myeloma patient was 43 months. And, like I described yesterday, that means in early 2007, the current data showed one half of multiple myeloma patients would live longer than 43 months, and one half would die in 43 months or less. It didn’t matter if or when you had a stem cell transplant—or what medications you took.
But I now believe those numbers were very, very inaccurate, even then. Myeloma docs just didn’t know it yet! It’s all about novel therapy agents: Thalomid, Velcade and Revlimid. It’s also all about how misleading “median life expectancy” numbers are.
Let’s start there. The average multiple myeloma patient is diagnosed when they are in their mid-sixties—I believe sixty-eight, to be exact. So common sense tells us many of those people were already suffering from any number of pre-existing conditions—not the least being old age! All myeloma patients, young or old (mostly old) are thrown into the same statistical pile. Were they overweight when they were diagnosed? Diabetic? Heart issues? Might they be more likely to develop other forms of cancer?
The bottom line: My take on this whole “median life expectancy” thing is—sure, the median may be four or five or six years. But patients living longer than the median—usually younger, healthier people—are living much, much longer than the median. In other words, half of the myeloma patients diagnosed a few years ago may indeed die in five or six years. But those who live—the other one half—won’t die the next year—or even the year after that! The other half are already living six, seven, ten years or longer. And that’s without using the newer combinations of novel therapy agents.
Now I realize some of you, especially those newbies who were diagnosed in the last few months, will still face this news with dismay. After all, it is always difficult to face one’s mortality—even though we are all going to die someday. But for those of us who believed our lives would be over in a few short years—well, this is very exciting news!
The “open-endedness” of it all (I’m sure that isn’t really a word!) must give us hope! Some myeloma docs are telling their newly diagnosed patients that they can expect to live “eight, nine or ten years.” Others stick to the more conservative four, five or six. But don’t you get it? Those numbers are already obsolete! By the time new studies are published and their stats averaged, others are surpassing them! And deep down, in your hearts, don’t you all believe that if you can live another five+ years there will be a cure? And if not a cure, at least a new novel therapy drug which will extend your life an additional three, four or five years?
What about the anecdotal evidence I promised? Tomorrow, my friends, tomorrow.
Feel good, be patient and keep smiling! Pat