Over my 14 years as a myeloma patient, I’ve been through 5 lines of therapy. Until my Carvykti (ciltacabtagene autoleucel) CAR T-cell therapy in the summer of 2023, I always needed to be on some type of treatment to keep my myeloma at bay. Post CAR T, I had 6 months of IVIG treatments, and this year, quarterly bone strengthening infusions. In the last 18 months, I’ve seen my medical appointments/treatments go from monthly to quarterly, and now, to only quarterly lab work and check-ins with my local hematologist and an annual check-in with my myeloma specialist, Dr. Sagar Lonial.
It’s been a wonderful transition that seemed odd at first. I am no longer forced to plan my work or vacations around my myeloma. My husband and I took advantage of this in October and made a long-awaited trip to South Dakota to visit Mount Rushmore and the state and national parks in the Black Hills area of South Dakota. We both love history and seeing the varied landscapes that make our country so special. We also combined this trip with time in Denver with my sister-in-law, niece and her family. For Christmas, we’re traveling to Oregon to spend time with more family for the holiday.
My myeloma journey is somewhat on pause right now but I always have a faint thought in the back of my mind as to how long this will last. My 1-year post CAR T-cell review in July included minimal residual disease (MRD) testing which showed 4 sequences as MRD-negative and 2 sequences which were not negative but were so low they were not measurable. All other quarterly lab work shows no sign of myeloma. This gives me great hope that my treatment-free time will perhaps continue all through 2025 and hopefully even longer.
This is my 12th time to attend the American Society of Hematology (ASH) Annual Meeting and Exposition. Due to my full-time work schedule, I’m participating virtually this year. I’ll miss being with everyone in San Diego but excited to be part of the virtual team. Sitting at home in front of my laptop and 2 monitors will be my myeloma control center and allow me to jump from abstract to abstract without the tired feet and back.
This year, I’ll be focusing my attention on the retrospective (“real world”) studies on CAR T-cell therapies which will hopefully offer some insight into how long CAR T-cell treatment-free times are lasting and any data on patients who have received CAR T as a second line of therapy. I’ll also be tuned into the pipeline for new targets and treatments in these classes along with anything new for relapsed/refractory patients like me who have exhausted many of the traditional treatment options.
I’m so grateful to the International Myeloma Foundation (IMF) and the pharmaceutical company sponsors that provide the resources for our team to participate in the 2024 conference. It’s an amazing experience that I look forward to sharing with you. Please check out my blogs and tweets on Twitter (X) throughout the conference!
Linda Huguelet, Chattanooga Multiple Myeloma Networking Group
@LindaMYELOMA