Unraveling the Mysteries of Multiple Myeloma: My CancerLinQ Discovery Journey

By: Christin B. DeStefano, MD, Joint Base Andrews Air Force Base


In my pursuit of oncology research, the quest for comprehensive and reliable data has been a constant challenge. I found myself drawn to the intricacies of oncology, particularly focusing on service members and retirees with multiple myeloma. This case study delves into my journey, highlighting the pivotal role that CancerLinQ Discovery played in unlocking the doors to valuable real-world data (RWD).

Research Background:

My interest in oncology research stems from the inherent inequities in clinical trials, to include under-representation of not only minority groups but also of younger adults with cancer, of similar age to younger adult active-duty service members. After caring for service members with multiple myeloma and other plasma cell dyscrasias, I found it perplexing how little data there are in the literature to inform prognosis or guide treatment decisions for this special subgroup of patients. Therefore, RWD was used to bridge these gaps.

Defining Success:

Success transcends individual projects. It is the cumulative gain of new knowledge, experience, and networking to enhance patient care and peer education which marks the true triumph in the world of oncology research.

Challenges in Data Acquisition:

Before adopting CancerLinQ Discovery, the challenges in obtaining reliable data were evident. Single-center data was prone to errors, necessitating manual review of patient charts. The adoption of electronic health records (EHR) allowed for data retrieval from multiple sites, mitigating the risk of human error.

Transformation with CancerLinQ Discovery:

The utilization of CancerLinQ Discovery proved to be transformative. We gained profound insights into the power and limitations of RWD. The experience shed light on future directions, emphasizing the need for addressing gaps in structured versus unstructured data, missing data, and EHR standardization.

Process of Collaboration:

Collaborating with the CancerLinQ team proved to be a seamless experience. Technical support, led by Ms. Brooke Smither, facilitated a smooth journey and the CancerLinQ team demonstrated patience and guided the process effectively.

Unique Achievements with CancerLinQ Discovery:

CancerLinQ Discovery enabled us to explore EHR and structured data, tackle missing data challenges, and delve into the strengths and weaknesses of big data in oncology research. The ability to conduct survival analyses provided a unique perspective on myeloma outcomes in young individuals.

Surprising Revelations:

The most noteworthy finding is the general scarcity of data for young people with multiple myeloma, making it challenging to understand outcomes and guide treatment for active-duty service members. The increased risk of secondary acute myeloid leukemia (AML) in younger individuals and the persistent challenges in improving outcomes highlighted the pressing need for advancements in myeloma research.

Publications and Future Directions:

Initial research aims focused on exploring outcomes of individuals under the age of 45, to include focus on risk of secondary primary malignancies (SPM). Leveraging a robust dataset comprising over 50,000 patients with multiple myeloma, it was shown that 8.2% of patients with multiple myeloma treated in the modern era developed SPMs, most of which were metachronous. Former or current smoking, male gender, and receipt of intravenous melphalan heightened the risk of SPMs. Development of any SPM adversely affected survival, especially for AML, acute lymphoblastic leukemia (ALL), and lung cancer. Race did impact risk of specific SPM type but did not affect survival after SPM development. Results of this study are published in the American Journal of Hematology.

In a parallel study, outcomes of 1,946 young patients with multiple myeloma from the National Cancer Institute’s SEER database and 1,334 individuals from CancerLinQ Discovery were characterized. This study, published in Clinical Myeloma Lymphoma and Leukemia, unearthed distinctive patterns in cancer development among younger patients. They were found to be more predisposed to ALL and AML, while showing lower susceptibility to nonmelanoma skin cancer and prostate cancer compared to their older counterparts. Moreover, the results underscored a significantly longer median overall survival in the younger patient cohort. However, the paradox emerged – despite living longer, these younger individuals were still succumbing to myeloma, and not infrequently, infections. This research sheds light on the complexities surrounding secondary cancers, causes of death, and survival in young patients with multiple myeloma.

While strides have been made, a call to action resonates: we must strive to do better in our understanding and management of competing causes of death to further enhance the quality of life and survival outcomes for our patients.


CancerLinQ Discovery showcases the transformative impact of real-world data on oncology research, exemplifying the potential of large datasets in unraveling mysteries and addressing challenges in cancer research. Lessons learned from this case study pave the way for a future where data-driven insights drive advancements in oncology care.