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Pat’s Place: Following Multiple Myeloma Research Can Be Frustrating, Yet Exhilarating!

By: Pat Killingsworth; Published: May 26, 2011 @ 3:12 pm | Comments Disabled

Many multiple myeloma patients and caregivers live in a new, Internet-centered world.

As recently as five or six years ago, someone with multiple myeloma would have heard about a new anti-myeloma therapy from their oncologist—probably when the new drug was being prescribed for the first time—or possibly while deciding whether or not to participate in a clinical trial.

Man, have times changed!  Not only are there as many as 90 different myeloma-related drugs or drug combinations being researched now, but thanks to websites like The Myeloma Beacon, it is easier than ever before to follow the progress of these drugs.

This is a good news/bad news type of thing.  The good news: It is far easier for all of us to stay hopeful, with so many possible new drugs on the horizon.  The bad news: Following scientific advances like it is a sporting event can become exasperating!

Human nature leads us to ask:  “Why aren’t more of these new drugs available now?  What’s taking so long?”

Of course, if we didn’t know there were so many promising drugs in the pipeline, we might not get so frustrated!

As a former high school football coach and a big-time college football fan, all of this reminds me of the booming off-season high school football recruiting news services that have popped up in recent years.

Thanks to the Internet, fans are now able to follow the high school careers of players whom their favorite college football team may be recruiting from all over the country.  ESPN even features an all-day program that covers national high school signing day in February, ranking teams based on the players who sign letters of intent to play with a particular school.

It’s sort of like following the NFL football draft.  Fans hope getting a key, star recruit or two will turn around the fortunes of their favorite team.

But high school recruiting is a very inexact science.  After all, we are dealing with 18 year old kids here.  Some are early bloomers and don’t grow or improve much with time.  Some can’t handle the freedoms and responsibility of college life.  Some don’t have the educational background to do college level school work.  And some continue to grow and improve.

I apologize to those of you who are not college football fans, but the analogy between college recruiting and the fans who follow the process—and those of us who are hopefully watching the research progress of different anti-myeloma drugs—is nearly perfect.

Like trying to handicap and predict how well young high school athletes will perform in three or four years is next to impossible, so is trying to predict which new drugs will be the next, best hope for myeloma patients.

There are simply too many variables for any of us to accurately predict the future.

Predicting college football recruiting has become a big business.  So called “experts” and pundits give their opinions about different players and programs online, in print, and on television.

Multiple myeloma research hasn’t exactly become a spectator sport.  But more and more people are following myeloma-related research.  Many patients follow things closely and try to predict which drugs will have the fastest, biggest impact on our futures.

But in the end, we are all just guessing.

Still, I find following the process worth a few short-term frustrations.  For me, just knowing there are so many researchers, doctors, and clinicians working around the clock to try and improve our lives leaves me feeling hopeful, indeed!

That’s two weeks in a row I’ve shared how and why I can stay so positive in the face of my recent multiple myeloma relapse.  I hope some of that positivity is contagious!

Feel good and keep smiling!  Pat

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