2023 marks my 13th year as a myeloma patient and my 11th time to attend the American Society of Hematology (ASH) Annual Meeting and Exposition. I’ve gone through numerous treatment regimens and seen a tremendous amount of progress on the research front during this time. Overall, I’ve been blessed that my myeloma experience has been fairly easy to tolerate, and I’ve been able to continue my full-time work.

I hate to admit it, but the past 18 months have been some of the most trying for me physically and mentally. My decades-long ritual of daily morning walks was abruptly discontinued after a vicious dog attack while walking one early morning in June of 2022. I no longer feel comfortable walking the route that I can fit into my schedule before work each day. Lack of walking weakened my core strength which was helping me overcome the effects of multiple vertebrae compressions caused by my myeloma. I recovered from most of my attack’s physical injuries in a couple of months, but I’m still working to rebuild my core strength and to find a steady exercise routine. In January of this year, my back pain worsened, and it was determined that my myeloma relapse had gone from a slowly progressing relapse that we’d been watching to a full-blown relapse. I’d never had back pain as part of a relapse, so this was new for me. In March, the decision was made that it was time to move on from Darzalex® (daratumumab), Pomalyst® (pomalidomide), and dexamethasone, which I had been taking since May of 2018.

After meeting with Dr. Lonial at Emory and Dr. Berdeja at Sarah Cannon, we all agreed that CAR T-cell would be the best next step. Luckily, I got a CARVYKTI (ciltacabtagene autoleucel) slot and insurance approved for me to have this done at Emory’s Winship Cancer Center under the supervision of Dr. Lonial and his fantastic team. A cycle of Kyprolis® (carfilzomib), Xpovio® (selinexor), and dex reduced my myeloma while I waited for my CAR T-cell slot. All went well with my CAR T, which was done at the end of June, and I’ve been enjoying being off regular treatments! I’m of course a little anxious about the duration of response I will have from my CAR T, but living each day as it comes. At times like this, I’m reminded of one of my favorite quotes from Fanny Crosby, a poet, lyricist, and composer born in 1820:

“Live life in the moment and make it so beautiful that it is worth remembering.”

–Fanny Crosby, poet, lyricist, and composer

I will certainly be living each day of ASH in the moment and absorbing as much as possible during this year’s conference. This year I’ll be focusing my attention on the retrospective studies on CAR T-cell and bispecific therapies and will be tuned into the pipeline for other 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 thankful to the International Myeloma Foundation (IMF) and the pharmaceutical company sponsors that provide the resources for our team to participate in this year’s conference. It’s an amazing experience that I look forward to sharing with you. Please check out my blogs and tweets on Twitter throughout the conference!

Linda Huguelet, Chattanooga Multiple Myeloma Networking Group
@LindaMYELOMA