A new member of our Santa Fe support group sent the following email to Susan Benjamin, our support group co-leader. She wrote, “Many thanks to you and the warm and so very helpful members of your group! The information I gained has already helped me tremendously. I shared it with my husband. We are both very grateful to you and the group. Thank you for the very valuable work you do in the New Mexico community!! I’m sure your work saves lives and offers hope and peace. I hope to see you again in January.”

Sharing information with those struggling with the reality of the disease is what motivates me to learn more about multiple myeloma. I am grateful for the opportunity to have attended ASH 2017. I hope through by sharing the latest research, I can bring hope and peace to my fellow myeloma patients.

My ASH 2017 Findings

  • Researchers are evaluating the very specific genetic causes and reporting high  mutations in the regulatory regions of the chromosomes in patients with multiple myeloma. From these mutations, researchers are identifying molecular markers that could improve treatments and outcomes. Monoclonal gammopathy of undetermined significance (MGUS) may be detectable as early as age 30 prior to the development of multiple myeloma.
  • Regarding clinical data, several studies report different combinations of existing drugs and novel therapies. Maintenance therapy, which was not standard before, has been shown to be effective with Revlimid irrespective of cytogenetic risk status.
  • The latest information that is now bing reported in the “lay” press is chimeric antigen receptor (CAR-T cell) therapy. This treatment has been reserved for relapsed/refractory heavily pre-treated multiple myeloma. The patients’s own T-cells are removed and genetically engineered to recognize and destroy myeloma cells that have the CD-19 antigen on their cell surface. These engineered T-cells are then re-infused into the patient. The T-cells may survive up to 21 months after infusion to attack and destroy myeloma cells. This is a living, personalized treatment that is now being performed in multiple specialized centers. In my opinion, it may be the closest thing resembling a cure for multiple myeloma to date.
  • MRD testing is now being considered a powerful and important predictor of outcome in the maintenance of MM. It is reported that one third of MRD-positive patients receiving maintenance therapy have become MRD-negative. Yet, the re-emergence of MRD positivity may suggest a poor prognosis. MRD maybe a better test rather than waiting for biochemical abnormalities or CRAB symptoms.

With the new information presented at ASH 2017 and the motivation from other support group leaders from the International Myeloma Foundation, I am eager to return to the Land of Enchantment Myeloma Support Group in Santa Fe to share these findings.