I am reporting live to you from the American Society of Hematology (ASH) conference in New Orleans. With me today is a recently diagnosed multiple myeloma patient, Amy, who has had an extremely difficult time with her myeloma. Told by two Washington D.C. docs to “go home and get your affairs in order,” Amy began exploring other options outside of D.C. and she ended-up in a clinical trial at Johns Hopkins and had an auto transplant, which failed.
My first question for you, Amy, is what made your situation/diagnosis so dire? “My age was one thing. I’m young–in my 30’s. For some reason that made all of my doctors nervous. They assumed, because of my age, that my myeloma was aggressive. It seems they just didn’t know much about myeloma.”
Amy, How is that possible? When were you diagnosed? “2008, Pat. It’s disgusting, pathetic and sad–the first two doctors I saw–specialist, or so they said–knew nothing about myeloma. They almost killed me!”
Amy, you said your transplant failed? “It only lasted two months. Then I started using Rev/Dex and my numbers began to improve again.”
I met Amy this morning at breakfast. She asked I not use her last name. Amy is a successful attorney and a brave, brave young woman. Slender, with short brown hair, professionally dressed–you would never know the hell she has endured over the past two years. I was impressed both with her and her attitude! Thanks for sharing, Amy!
Amy’s situation is a reminder to all of us that myeloma isn’t a “one size fits all” type of cancer. Different patients respond differently to the same therapies. So if you all remember one thing, please remember this: Get a second, and third, and fourth opinion! Amy’s background as an attorney saved her life. She scratched and searched until she found the information necessary to help her regain her life–literally! Amy actually asked her doctors to try Revlimid–and it worked!
Feel good, keep smiling, keep learning and never, never give up! Pat