Carol
Waldenstrom macroglobulinemia (WM)
Carol’s journey with Waldenstrom macroglobulinemia began after years of monitoring monoclonal gammopathy of undetermined significance (MGUS), a generally benign plasma cell disorder, when symptoms such as night sweats and rising IgM (immunoglobulin M) levels signaled disease progression. Under the care of her local oncology team and later Dr. Matous at Colorado Blood Cancer Institute, Carol underwent two lines of treatment, but relapsed both times. While these treatments helped Carol regain her strength and resume daily activities, long-term remission remained elusive.
In October 2024, Carol received an unexpected phone call that would mark a turning point in her treatment journey. While she and her husband were traveling, Dr. Matous who had been closely monitoring her laboratory results and overall disease status, contacted Carol. He shared that a new clinical trial might offer a promising alternative to her current therapy.
Following several months of blood tests and a bone marrow biopsy, Carol was enrolled into a clinical trial, designed to target her disease in a new way. Participation in the trial provided Carol with the opportunity to access an emerging therapy being evaluated through clinical research. Carol hoped this therapy might lead to improved, long-term results.
More than a year into the trial, Carol is doing well. Her IgM (immunoglobulin M) levels have dropped significantly, and her overall health has improved. Now retired, Carol continues to ride and train horses, hike with friends to pursue her goal of trekking all Boulder County trails, and remains actively involved in the lives of her grandsons.
Access to care has been a critical part of Carol’s journey. Through Colorado Blood Cancer Institute’s collaboration with Sarah Cannon Research Institute (SCRI), Carol has been able to access the latest therapies close to home—within an hour—reducing the burden, cost, and physical strain often associated with traveling to large academic medical centers.
Education and advocacy have also shaped Carol’s experience. Her family relies heavily on the International Waldenström’s Macroglobulinemia Foundation (IWMF) as a trusted source of information and support. The resources, education, and community provided by IWMF have played a meaningful role in building Carol’s confidence and understanding throughout her cancer journey.
As Carol moves forward, resilience and perseverance remain central to her story. Participation in a clinical trial has provided access to an innovative therapy while contributing to broader research efforts that may benefit future patients. Her experience underscores the vital role clinical trials play—not only in advancing science, but in offering patients new options when they are needed most. Carol considers it very meaningful that her participation in the clinical trial may also benefit others with Waldenstrom macroglobulinemia.
As Carol’s family reflects on the journey so far, they are reminded of a favorite lyric by Sheryl Crow: “Every day is a winding road, I get a little bit closer.” Through clinical research, Carol is moving forward—one step at a time.