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“The disease, nowadays, is considered more of a chronic condition because we have been putting patients into better treatment plans that produce excellent outcomes, elongate their remissions and azllow for a better quality of life,” he said.

“For instance, researchers have found that adding a new immunotherapy drug to the first line of treatment reduces the chances of a patient getting worse or dying by about 40% to 60%, while also lengthening remission by roughly 15% to 20% after 4 to 5 years,” he said.

Scott is an example of that evolution.

With an elevated risk of myeloma given his sister’s illness, Scott was monitored with blood tests for almost two decades. One of those tests, called Freelite®, was launched in 2001 by the Binding Site, a company acquired in 2023 by Thermo Fisher. In 2018, abnormal test results prompted Scott’s doctor to investigate further, confirming he had developed myeloma.  The result, he said, is a cancer journey drastically different than his sister’s.

“I can honestly say that I've never felt any of the symptoms of myeloma,” Scott said. “That is a stark contrast to my sister’s experience having the damaging symptoms of advanced disease.”

To understand the magnitude of that improved outcome, one must comprehend the complexity and challenges of myeloma. It is an incurable and heterogeneous disease. There is no typical journey and no one-size-fits-all treatment.

Myeloma is an elastic and persistent cancer, Luis said. Diagnosis usually occurs after the cancer has damaged organs and formed multiple lesions, or myelomas, in the patient’s bones—hence the name of the disease. Once treatment begins, patients experience a journey of peaks and valleys, periods of increased cancer activity that may be quieted, followed by relapses and additional rounds of treatment. Often, myeloma becomes resistant to one therapy, challenging doctors to find a subsequent treatment that will work. On average, a myeloma patient receives five different treatment protocols, Luis said.

Unequal odds, subtle signs

No one in the Meech family had heard of myeloma until Anita was diagnosed in 1998. Decades later, public awareness about myeloma remains low because it is an uncommon cancer, with only about 176,000 people worldwide diagnosed annually. Those diagnosed at younger ages, like Anita and Scott, tend to have a more aggressive form of disease.

Men have a slightly higher rate of the disease than women. People of Black ancestry are two to three times more likely than White people to develop myeloma, and studies have shown they present with the disease at a younger age and have more advanced symptoms, such as anemia, renal dysfunction, and elevated calcium levels.

Asian American and Pacific Islander populations have noticeably lower myeloma incidence rates than the U.S. White population, though estimates of the magnitude of the reduction vary by geographic region.

The reasons for these variations in disease risk and severity are still unknown.

Research suggests that both genetics and environmental factors may play a role in the development of myeloma, though there is no known inherited genetic mutation that is the driver of the disease, as there is in other cancers, such as breast, prostate and lung cancers, said Stephen “Ste” Harding, vice president and general manager of Thermo Fisher’s Protein Diagnostics business responsible for the myeloma diagnostics.  There is also no recommended testing for myeloma at a certain age, as there is for some other cancers. However, ongoing studies aim to determine whether recommended testing could contribute to earlier diagnosis and potentially improve outcomes, said Ste, one of the researchers involved in one such study.

Scott said that, in retrospect, he believes he was fortunate to know he was at risk of myeloma because his compliance with quarterly blood monitoring enabled an early diagnosis and improved his journey.

Comparatively, patients who do not know they may be at risk of developing the disease might spend months seeing medical specialists before they are finally diagnosed, Luis said.

For Scott, the presence of MGUS, coupled with a first-degree family connection to myeloma, meant he had an elevated risk. Doctors explained that blood tests every few months would allow them to monitor Scott for signs that MGUS was evolving into myeloma. One of those tests would monitor the accumulation of M proteins. The second, Thermo Fisher’s Freelite, monitors the accumulation of another indicator protein, free light chains, produced by rogue plasma cells. Studies have shown that these tests together can diagnose 99% of myeloma cases, Ste said.

“It was pretty terrifying for a while,” Scott said of learning he had an elevated risk. “My wife and I were in our early 30s and had two young children. It framed a lot of our lifestyle choices.”

*The following information relates to uses of the EXENT Immunoglobulin Isotypes (GAM) for the EXENT Analyser test system that are authorized in certain markets outside the United States. Availability, indications, and regulatory status vary by country. The EXENT Immunoglobulin Isotypes (GAM) for the EXENT Analyser test system has not been evaluated for use in post-diagnostic patient monitoring of monoclonal gammopathies, in the USA.

This information is intended for healthcare professionals in regions where these uses are authorized.

**For full product information, please consult the product labelling.

U.S market information only: Rx only. Serum matrix only.  Results require valid Optilite® IgG/IgA/IgM results on the Optilite Analyzer. For use as a reflex test when serum protein electrophoresis suggests an M‑protein or when serum free light chains are abnormal

EXENT, Optilite and Freelite are trademarks of The Binding Site Group Ltd (Birmingham, UK) in certain countries.