Yesterday I set the stage for Wednesday’s media panel discussion outside of Boston.
Today I wanted to continue by sharing some of the things I learned from our distinguished panel.
Following introductions our moderator, Anne Quinn Young, Vice President of Strategic Alliances for the Multiple Myeloma Research Foundation (MMRF), got us started with a brief history of myeloma therapy over the past decade.
Dr. Noopur Raje, a hematologist, oncologist and researcher at Massachusetts General Hospital took things one step farther, describing how today’s treatment options are allowing patients to not only live longer, but also enjoy a better quality of life. Beth Faiman, an oncology nurse and CNP, who specializes in hematologic oncology and blood disorders with the Cleveland Clinic, focused on different patients are looking for different types of information and in different ways.
I was a bit of a “militant” at first. I kicked-off a lengthy discussion by sharing how many of my readers–although acknowledging there have been significant advances in progression free and overall survival–feel researchers may have dropped the ball by not pushing harder for a cure.
Dr. Raje didn’t get defensive. But as a researcher and physician, she did share a different and unique perspective. Noopur (she encouraged us to use her first name) pointed-out that striving to turn multiple myeloma into a chronic disease didn’t mean the search for a cure had gone by the wayside.
On the contrary, Dr. Raje made a compelling point that enabling patients to live indefinitely WAS A CURE! She feels strongly that we are far closer to a cure than everyone thinks.
I think that Dr. Raje makes a fair point. If you and I can live ten, fifteen,twenty years or even longer–and we then die from unrelated causes–isn’t that in fact a cure?
Anne with the MMRF noted that 70% of multiple myeloma patients are 70 years or older at the time of diagnosis.
Ann, Noopur and Beth all agreed that finding a way to help older patients maintain a relatively good quality of life for ten or more years isn’t a cop-out–it’s a logical and achievable goal which makes a lot of sense.
Sure, we would all like to take a magic pill and wake-up the next morning and have our myeloma go away. But that isn’t very realistic–at least at this point.
Beth chimed-in: “There isn’t a cure for diabetes, yet many diabetics live long and productive lives. Considering how many people are negatively effected by heart disease, diabetes and other chronic health issues, we may not be far away from considering them (myeloma patients/survivors) to actually be better off.”
I want to pause here and note that this line of thinking had a profound effect on me. As I reflected upon what Napoor and Beth had to say Wednesday, I left feeling uplifted and hopeful.
Think about it: If we as patients are willing to accept Dr. Raje’s definition of “cure,” then it is easy to imagine that a cure for multiple myeloma may be just around the corner.
Or as Dr. Raje stated: “The cure for multiple myeloma is probably already sitting in a lab somewhere.” Dr. Raje then noted that by adding one more drug to the mix, at just the right time, may be all it takes to take a myeloma patient from “incurable” to chronic and “cured.”
She went on to explain that by better matching each patient’s genetic profile to the right combination of medications, overall survival statistics should continue to improve dramatically.
No, it won’t be a single, one-size-fits-all magic pill or therapy. But it will be a combination of different approaches, individually tailored to each specific patient’s needs.
We discussed that at length. There wasn’t a lot time devoted specifically to individualized dosing, but all agreed a more sophisticated system of genetic profiling should help myeloma patients live longer–and better–in the not-so-distant future.
I volunteered several other key points, interjecting them into the discussion as the hour went on.
I will share those with you tomorrow.
Feel good and keep smiling! Pat