How MRD Testing Can Help You Make Treatment Decisions: Connie Carlson's Story

Connie Carlson is a patient advocate and octogenarian who lives in the Seattle area and is delighted to celebrate being another year older. She owns a business and loves to go on walks with her husband and read (even confusing scientific papers). "We're over-the-moon grandparents of a three-year-old," Connie shared with HealthTree Foundation.

Near the end of 2021, Connie met with her primary care physician to discuss her fatigue. After a complete medical workup and blood tests, she was diagnosed with multiple myeloma. She would later learn that she had a poor prognosis due to two gene translocations that make treatment less likely to succeed.

Connie's myeloma treatment experience

Connie immediately started RVD therapy, which is a combination of lenalidomide (Revlimid), bortezomib (Velcade), and dexamethasone. After nine months, she had no detectable myeloma cells and was placed on a maintenance therapy of a low dose of lenalidomide. After two years of this therapy and still no detectable cells, she felt worn down and had complications with her digestive system. She decided to stop her maintenance therapy. 

By August 2025, Connie had been off maintenance therapy for two years. During this time, she had several ClonoSEQ tests followed by mass spectrometry. These tests look for minimal residual disease (MRD). These are small amounts of cancer cells that may still be present in the body. Connie's results revealed a reported range from 0 to 1 to 2 cancer cells per million cells. 

Specialists disagreed about what Connie's results meant. One saw it as "still MRD positive." Another expert told Connie she was definitely MRD negative. These two different diagnoses were gathered from the same data and medical history. Hearing two different perspectives on her MRD status was both upsetting and confusing. 

Why MRD matters

Connie knew that MRD was an important factor. Her critical thinking and research led her into a deep study of MRD. MRD can also stand for "measurable residual disease." This interpretation helped Connie to better understand MRD and how the cells are measured. 

For years, she had read on her bloodwork results that she was "below detectable." This meant 0 myeloma cells were found in a blood sample of 100,000. On the lab report, it is depicted as 10^-5. The ClonoSEQ test measures myeloma cells in a sample of 1,000,000. This is depicted as 10^-6.

MRD-negative status indicates a deep response that must be maintained over time in order to predict a better long-term survival. MRD-positive results indicate the cancer may return. 

Connie has been "not measurable" negative 10^-5 for over two years. But she is also "slightly measurable" at 10^-6. Based on years of clinical trial testing for MRD at 10^-5, her track record at this low level suggests that her cancer will probably not return.

There are many patients in a similar situation. Testing at 10^-5 indicates MRD negative. But testing at 10^-6 indicates slightly MRD positive. At this point, patients must make a difficult decision to stay on maintenance medication or discontinue treatment. Because Connie's data showed her cancer was unlikely to return, she made the decision to stop treatment.

What MRD results mean

A positive MRD result does not mean a relapse is certain or you are no longer in remission. Some patients may remain in remission for a long time, despite having low, stable levels of disease cells.

Think of MRD testing like searching for a few needles in a very large haystack. Doctors are looking for tiny numbers of cancer cells after treatment is complete. The measuring  tools to search for these cells are:

• Next Generation Flow (NGF): This flow cytometry test uses special dyes to detect cancer cells based on what’s on the surface of each cell. This test is in MyChart under the result Protein Electrophoresis Panel and the result is measured at 10-5.

• Next Generation Sequencing (NGS): This test identifies the unique “fingerprint” on cancer cells. The most common method is ClonoSEQ. This test is FDA approved and is capable of detecting one cancer cell among 1,000,000 healthy cells. This is a significantly more sensitive test than NGF and is measured at 10-6.

• Mass Spectrometry: This is an emerging, highly sensitive method that detects the M protein that is produced by remaining cancerous, plasma cells. This test is measured at 10-7 (1 in 10 million).

• Imaging: Tests like PET-CT or MRI are used along with bone marrow tests to locate any diseased cells outside the marrow. 

Understanding what MRD means for you

Connie went to the literature and read over two dozen papers summarizing the outcomes of several clinical trials on multiple myeloma and how it relates to MRD. This knowledge helped her better understand what was happening with her disease.

Achieving MRD negativity (no detectable cells) is considered the most important factor in a patient’s prognosis. Although she is slightly positive at 10-6, Connie felt considerably less upset that her sustained negativity at 10-5 predicted such a good outcome.  She was also less distressed at being on the positive side for sustained MRD at 10-6.  Experts now recommend combining more than one method of testing to get the most complete picture of whether any cancer remains.

While MRD is a powerful indicator of a deep response to treatment, it does not guarantee a cure, and a change in MRD does not always indicate an immediate relapse. Current research is focused on determining whether treatment, such as maintenance therapy, should be adjusted based on a patient’s MRD status.

Know your data

Throughout Connie’s diagnosis and treatment, she continued to learn. She gathered as much knowledge as she could about her disease and how it affected her body and quality of life. This education helped her to understand her MRD and multiple myeloma and to determine next steps for therapy.

Never stop learning, your care is in your hands. HealthTree is here to help you at every step in your cancer journey. Take advantage of having everything in one place: track your treatment, your labs, your side effects. Let HealthTree help you find clinical trials that fit your prognosis. Find a Coach to help you through your questions. Access our patient navigators and even schedule a one-on-one time for personal help. We are here for you at HealthTree. Together we care. Together we cure. 

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