When I was diagnosed with multiple myeloma in 2008, at just 47, I was lucky. I was asymptomatic, my cancer was detected through a routine blood test, and I had the smoldering type, so I didn’t need immediate treatment. Plus, I knew that recent advances in more effective therapies were making it possible to halt disease progression should my cancer start to accelerate, and there was the promise of more drugs to come.

Still, getting a diagnosis of an incurable cancer scared me enough to give up running a successful company to spend more time with my family and move to a smaller house to reduce expenses. In retrospect, taking those steps was a mistake and an overreaction to my diagnosis.

When my cancer did start to progress in 2012, I was better prepared. By then I had gotten involved with the Multiple Myeloma Research Foundation (MMRF) [http://www.themmrf.org] and learned about a study it had launched called CoMMpass (Relating Clinical Outcomes in Multiple Myeloma to Personal Assessment of Genetic Profile). The purpose of the study is to collect bone marrow tissue before treatment begins and then at remission and relapse and sequence the biospecimens for genomic analysis. I immediately enrolled in the study because I want to help advance a better understanding of this cancer and the development of more effective drugs—if not to actually cure myeloma, to at least turn it into a chronic disease that I and other patients can live with for a long, long time.

Crusading for CoMMpass

Once my bone marrow tissue was collected, I was prescribed a cocktail of bortezomib (Velcade), lenalidomide (Revlimid), and dexamethasone. I have the IgG type of myeloma, and that treatment put me in remission. To help me stay there, I’m on maintenance therapy with low-dose (10-mg) lenalidomide. Although I have some common side effects, including fatigue and numbness in my feet and hands, I’m grateful such a drug exists.

While this regimen of drugs has worked for me, I know that many myeloma patients aren’t so fortunate. I’ve watched a number of friends with myeloma die from their disease, and I know that my situation could change at any time. That is why I am on a crusade to get out the message of the importance of informing newly diagnosed myeloma patients about ­CoMMpass and giving them a chance to get enrolled before they start therapy.

Because I believe this study will make such a difference in changing the dynamic of myeloma and its effect on people’s lives, I’m advocating that information about CoMMpass—and any relevant clinical trials for patients with cancer—become part of a checklist of information that is embedded in electronic health records. It would be a good step in helping remind physicians to talk to their myeloma patients about enrolling in CoMMpass prior to treatment.

Starting Over

The clinical prognosis today for many newly diagnosed patients with myeloma is vastly improved from that of my diagnosis 6 years ago. New drug discoveries and the understanding that myeloma isn’t one disease but several are making it possible to turn this incurable cancer into one that I and other patients can live with for many, many years. Curing myeloma would be great, but I’ll gladly take a conversion of this often-deadly disease into a treatable, chronic one.

Because of my involvement with MMRF I know how hard scientists are working to make that goal a reality, and I’m grateful for their dedication. Their work and the progress being made in myeloma have given me the confidence to start a new company, because I now believe I have time ahead of me.

Being part of CoMMpass makes me feel that I’m making a tangible contribution to these scientists’ efforts. I can feel the momentum building, and I’m glad I’m still here to benefit from and celebrate their success. ■