How A Genetic Test Helped Susan Benjamin Find New Treatment Options for Multiple Myeloma

Susan Benjamin lives in the beautiful, high mountain town of Los Alamos, New Mexico. She was first diagnosed with multiple myeloma in 2011 and is grateful and proud to be a 14+ year survivor. When Susan's myeloma returned, genetic testing offered by the HealthTree Foundation uncovered a treatable mutation that helped guide her treatment options. Learn more about Susan and how the Predicta Genetic Test helped her. 

Susan's experience with multiple myeloma

Earlier in her life, Susan was a classroom teacher and a national workshop leader in Math and Science. Susan continues to keep active with long walks, facilitating her New Mexico myeloma support group, and enjoying her creative art projects. She is involved with her four wonderful grandchildren, her loving spouse/care partner, and her many friends. 

Susan has experienced over five lines of treatment, including a stem cell transplant, CAR-T therapy, and bispecific therapy. "I think CAR-T may have lasted longer than a year if my body had not been assaulted by colon cancer while recovering from CAR-T therapy," Susan said. She recently relapsed after nine months on a bispecific and is now on a trial drug called mezigdomide in combination with carfilzomid and dexamethasone. This treatment allows her T-cells a much-needed rest.

How the Predicta genetic test helped Susan find new treatment options

Last summer, HealthTree offered the Predicta Genetic Test to some patients participating in HealthTree programs. This test is genome sequencing for blood and bone marrow. Always curious, Susan took the test and submitted blood samples. The test revealed that Susan had a BCMA mutation. This is a protein that can be highly expressed on multiple myeloma cells. It makes the cells "invisible" to treatment, which causes it to be resistant to some medications.

With the knowledge gained from this sequencing, one of Susan's specialists noticed that she had good coverage of the genes needed for mezigdomide. Since this drug is not yet approved by the U.S. Food and Drug Administration, she has received the treatment under an Investigational New Drug (IND) plan under the supervision of her specialist. She is hopeful that this drug will decrease the light chains. 

The Predicta program is currently paused at HealthTree. Patients who are interested can email our Patient Navigators at support@healthtree.org to be notified if this test becomes available again. Read more about the Predicta test here.

Learn more about a currently recruiting clinical trial for mezigdomide. 

Make a difference by connecting your health records

Susan found HealthTree when she contacted Jennifer Ahlstrom, the CEO, to attend her support group as a speaker. “Jenny and team were inspiring. Several patients in my group immediately signed up for Cure Hub,” Susan said. They securely connected their health records to access everything Cure Hub offers, including:

• TRACKED LABS: See your latest labs and track them over time and lines of treatment.
• ACCELERATE RESEARCH: When you anonymously share your data, it advances treatment for all patients.
• SIDE EFFECTS SOLUTIONS: See what other patients are doing to minimize side effects.
• TREATMENT OPTIONS: Discover personalized treatment recommendations.
• CLINICAL TRIAL FINDER: Find open clinical trials where you are qualified.
• TWIN MACHINE: Find your genetic twins and view their treatments and outcomes.
  

Susan's advice on living with multiple myeloma

Susan’s advice on living with this disease:

• Focus on quality of life.
• Pay attention to what you CAN do and not to what is out of reach.
• See multiple myeloma as a part of your life, not your whole life.
• Experience and share the kindness and love offered by others.
• Be a part of the multiple myeloma community. Take part in seminars and events. Knowledge is power!

Cancer is always a present dark cloud, but Susan sees herself as a force for pushing forward, gaining knowledge, and reaching out to others. She has gathered a team of fantastic specialists, doctors, nurses, family and friends. “Help and connections from the myeloma foundations, such as HealthTree and the IMF (International Myeloma Foundation), have been invaluable for me. I believe that myeloma is a journey, not a destination.”