You must be sedated for a BMB....and other things we've learned in the last five years....

Two hours ago, I took Deana to the airport for her trip back to Pittsburgh.

Five years ago, I was on my way to the airport to get myself to Pittsburgh. The night before, we heard "multiple myeloma" for the first time.

Although it would be two days before this diagnosis was confirmed, I was deeply concerned by my brief research and needed to get to my family.

What a difference five years makes. So much of this difference is due to the outstanding work of the Multiple Myeloma Research Foundation (MMRF). Led by Kathy Guisti, MMRF has radically changed cancer research, accelerating the process by which promising drugs are brought to patients. My family is grateful.

I recently listened to a terrific podcast on Myeloma Crowd radio, where Dr. David Siegel of John Theurer Cancer Center was interviewed. I highly recommend this podcast to MM warriors and their caregiving teams. Dr. Siegel acknowledged that for MM, it is a completely different world than it was five years ago, with dramatic changes especially in the last year. He credited the MMRF for its work which has changed the drug companies' views with regard to clinical trials. A decade ago, researchers had challenges obtaining drugs for trial. Now, the companies are nearly banging down the doors to have their drugs tested. For my family, a clinical trial is currently making all the difference.

Deana now starts cycle 30 of ABT 199, also known as Venetoclax. The trial called for 10 cycles, but her response has been so outstanding, with no cancer detected in her recent lab work, that we continue on with the trial. Some might term this status to be "remission," Deana prefers "stable." (She credits "stable" to her fellow MM warrior Yvonne, who first introduced her to this descriptor.)

Though the future is promising for MM warriors, we cannot let down our guard. In the larger context, we must continue to push for funding for cancer research, and as we are able, we need to support those non-profit organizations that provide funding with gifts of our time and treasure. In Deana's case, as we continue to pray for her continued stability, we must always remain vigilant with regard to her health. We were reminded by one of the researchers at treatment yesterday that hers is not a normal immune system and thus, we need to be concerned, even when she gets what for one of us might be a simple head cold.

While Deana and I were at Emory's Winship Cancer Center yesterday, I asked her to share some of the most important things she has learned in the last five years.  Her immediate response:

You must be sedated for a bone marrow biopsy (BMB).

Dexamethasone has its good and bad points. You have lots of energy, but you gain weight and you are aggressive.

Get a port. (And get a bottle of port, too, if you feel so inclined.  Red wine is good for you.)

To these I add:

Involve a myeloma specialist right away, even if only to help you craft a plan that can be administered locally.  (More on this in a later post.)

Cherish every day and every thought and prayer directed your way.