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A multiple myeloma survivor discusses how continued minimal residual disease negativity made her feel more confident in coming off of maintenance therapy.
After undergoing treatment — including a stem cell transplant — for multiple myeloma, Tiffany Williams was put on maintenance Revlimid (lenalidomide) to prevent the disease from coming back. Then, after six years of Revlimid, she was able to come off the drug because minimal residual disease (MRD) testing showed that she had no traces of cancer within her body.
“Over time, I realized that it’s OK to breathe. It’s OK to feel safe,” Williams, a 55-year-old retired nurse practitioner and mother of two, said in an interview with CURE®. “I started to feel like it was OK to enjoy time off of meds.”
MRD testing is a process where clinicians look at either blood or bone marrow cells to see if there are any leftover traces of cancer. For Williams, who initially received the myeloma diagnosis in November 2013, MRD testing was part of a scheduled bone marrow biopsy while she was on maintenance therapy.
The results from the procedure can lend insight to long-term outcomes for patients with blood cancer — those who test positive for MRD may be more likely to experience cancer growth or recurrence than those with MRD negativity.
MORE: Minimal Residual Disease is A Vital Marker for Patients with Multiple Myeloma, Says Expert
However, coming off maintenance treatment, which is only something offered to patients with myeloma who underwent a stem cell transplant, can bring its own stressors. In fact, after Willams’ first test came back MRD negative, she stayed on Revlimid for another year.
“For the first (MRD testing) I had, (my negative status) was a reason to celebrate and be joyful. But at the same time, I wasn’t sure if I wanted to come off therapy,” she said. “I had reassurance of being on (maintenance therapy.)”
When the MRD status came back as negative once again a year later, Williams felt more reassured that her cancer was gone for good, and it was OK for her to stop taking Revlimid. “It was definitely a psychological process of coming to a readiness and that it’s OK to feel safe, and I don’t have to be so afraid,” she recalls.
Now, even though she’s no longer on maintenance therapy, Williams still follows up with her health care team every three months, and still undergoes bone marrow biopsies to test for MRD and other signs of myeloma. The next one, she said, will be this summer.
Williams encourages others on maintenance therapy to talk with their doctors about MRD testing, and whether or not it could change their treatment trajectory.
“I think the peace of mind it provided for me might not be for everyone,” she said. “But I would encourage people to explore it, talk to their doctor about it… if you choose to get MRD testing, the results can help you better understand the disease in total.”
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