I promised to give everyone an update about how I’m doing today. The antibiotics are working and I’m doing OK. But I’m guessing many of you watched Tom Brokaw’s one hour special about multiple myeloma on Dateline NBC last night. I’ll put off posting details about my ongoing recovery to share information about last night’s broadcast.
I know from reading dozens of emails and comments about Mr. Brokaw’s multiple myeloma, that there was an undercurrent of concern about how his myeloma would be portrayed. And at first, it looked like their concerns might be justified.
“Cancer” was used almost exclusively during the first ten minutes of the program. But that’s understandable: broadening things out makes the book and broadcast more inclusive, helping draw a broader audience.
But having an entire hour to spend allowed Tom (“Mr. Brokaw,” or the journalistic,”Brokaw,” seems so formal. May I call you Tom? I don’t think he’ll mind…) to share an incredible amount of detail. Later he was more specific, using “multiple myeloma” often instead of the more general “cancer.”
Ironically, Tom was on the Mayo Clinic’s Board of Directors–and in Rochester, Minnesota for a meeting–when he was diagnosed. Dr. Morie Gertz was the first specialist to treat him. Since Tom and his wife, Meredith, lived just outside New York City, he was treated regularly at Sloan-Kettering. That’s where I’m scheduled to see Dr. Koehne about joining his modified allogeneic (donor) stem cell transplant clinical trial.
I want to pause here to editorialize a bit. I thought the program was excellent. I was surprised by the myeloma related detail. And I’ve met most everyone interviewed by Dateline that’s associated with the disease: Dr. Gertz at Mayo, myeloma advocate Kim Alexander, the MMRF’s Kathy Giusti and Dana-Farber’s Dr. Ken Anderson.
Tom didn’t know how to pronounce “dexamethasone” correctly, but he specifically referenced it as part of his combination therapy we know as RVD: Revlimid, Velcade and dex. Tom reported about how he needed Kyphoplasty to help repair several collapsed vertebrae. And Tom didn’t hide the fact that ongoing infections plagued him, 0n-and-off, during the first year of his therapy.
He also included advice for caregivers, along with tips about how to help build a strong support system and medical team. Tom revealed that his doctors gave him an eight year prognosis; more than twice as long as my Mayo Clinic doc gave me–coincidentally–8 years ago.
Tom was able to achieve remission–I assume that means a complete response, or CR–at the end of his first year. I know, I know; his story left me with more questions than answers. Is Tom in stringent CR? What type of maintenance therapy is he on? Why did Tom’s doctors decide to skip an autologous stem cell transplant? His age? The fact RVD worked so well so fast? His age? Most likely because of his heavy travel schedule. Even thought he admitted to being in constant pain, Tom traveled abroad a number of times–and cross country to California–in the first year following his diagnosis.
Yes, Tom got off track in the final 15 minutes, sharing the stage with World War Two vets and others he’s interviewed over the years. But in the end, I liked so much about the intimate hour. Tom seemed truly sympathetic toward other myeloma/cancer patients, sharing how tough it is to soldier through. Tom stressed how important it is for patient’s to take an active roll in their treatment. All in all, there was a surprising amount of detail in the thinly veiled hour designed to grab ratings and help promote his book.
And it worked; As I shared yesterday, I’ve already ordered it, spending extra to get it by the release date of May 12th. If I had more time and forethought, I should have placed an order and had a number of copies available for sale in our MyCancerStore.org online. But that’s what healthy, hard charging small business owners do. Considering I’ve been feeling under-the-weather the past month, it was easier just to order one from Amazon like everyone else.
I’m encouraged that Tom’s book will focus even more light on what its like to be diagnosed–and treated–with multiple myeloma. Enjoy the honeymoon period while you can, Tom. Here’s hoping it lasts a number years before the inevitable relapse.
Tom mentioned immunotherapies at the end of the hour. Three or more should be FDA approved by the time you need them, new friend. Best of luck to you and your wife.
Feel good and keep smiling! Pat