The Honorable M. Robert Carr: Multiple Myeloma

Age: 69
Former U.S. Representative, Michigan's 8th Congressional District

My cancer showed a complete response to treatment and has been undetectable since 2008. I am keenly aware that my status as a cancer survivor owes much not only to my personal doctors, but also to all those researchers and patients whose catalogued, cumulative experience contributed to my successful treatment. I am especially grateful to those patients whose treatment was not successful, but whose legacy was in the lessons learned by the professionals who advanced, no matter how small, the knowledge necessary to succeed and to save lives like mine.

I received my diagnosis of multiple myeloma in 2007, just two weeks before I was due to run my second Marine Corps marathon. I was lucky; it was later determined that my disease was extensive and accompanied by kidney problems. My doctors told me that if I had run that marathon, my outcome might not have been as good as it has been.

I started treatment the day I found out that 85% of the cells in my bone marrow biopsy were cancerous plasma cells, which meant that I had stage III disease. Luck was with me again at this point because the drug I was given, bortezomib (Velcade), had only been FDA approved for my condition a few weeks earlier. I was given bortezomib for 23 weeks, and each time I had a shot I had to take a high dose of steroids for two days.

The only side effect I experienced from the bortezomib was neuropathy in my feet, although that was bad enough. The steroids, however, were incredibly hard to endure; they gave me huge ups and downs—I would feel great the days I took them and then absolutely awful after that. I was very glad to be done after 23 weeks, at which point fewer than 3% of the cells in my bone marrow biopsy were cancerous.

Although my response to the bortezomib and steroids was very good, and my doctor says it saved my kidneys, I did have to undergo a stem cell transplant to get rid of the remaining cancer cells. The high-dose chemotherapy that preceded the transplant was agonizing, and the whole process took almost a year. But I am thankful. I have been in remission since the stem cell transplant, and I live a normal life. I take lenalidomide to keep the cancer at bay and my blood is checked every 30 to 45 days, but I just live with that. Running a marathon or a 10K is much more arduous, and something I do regularly.

My cancer experience taught me not to take health and health care for granted. I was lucky enough to be treated by a doctor who is one of the most knowledgeable about multiple myeloma and to have health care that enabled me to receive state-of -the-art treatment. But I have a nagging guilt because there are people with the same disease as me who could be treated successfully if they could just get access to the right treatments. I very much hope that in the future, I will get a chance to make a difference and help open up access to health care.

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