The whirlwind of #ASH24 has slowed down and now it is time to digest all the info we have seen presented. Every year, I find it very important to review IMF Chairperson of the Board Dr. S. Vincent Rajkumar’s updated myeloma treatment algorithms based on the data presented at ASH. It is exciting to see new research implemented into his guidelines yearly. Dr. Rajkumar is careful to say that these are general principles and that treatments evolve and individualized treatment is a priority. He also says that, in general, a clinical trial is preferable if one is possible and available. With a trial, so that more can be learned. So much work in myeloma research across the globe goes into what is presented here at ASH—I”m so grateful to all.
I wanted to start this blog by including a photo of the IMF’s newly formed Scientific Advisory Board (SAB). (It is this blog’s main photo.) I am so proud and excited for their input into research in the future. So much #myeloma greatness in this photograph and more importantly, kindness, integrity, and passion to better the lives of myeloma patients everywhere. Thank you, SAB!
Dr. Rajkumar’s annually updated myeloma treatment algorithms:
First relapse. Dr. Rajkumar doesn’t recommend CAR-T in first relapse, even though it’s approved,except in very selected patients (eg., high risk progressing early while on quad therapy)
Second or later relapse.
True Penta-refractory myeloma (refractory to a proteasome inhibitor, or PI; an immunomodulatory drug, or IMID; a CD38, alkylator; and BCMA-targeted approach):
I have been a multiple myeloma patient for nearly eight years, and during this time there have been so many changes in my life. As a patient, I’ve now been on my second line of therapy twice as long as I was on my first line. As a scientist, I closed my research lab and transitioned to teaching graduate and medical students at the academic medical center where I get my care. As a mom, I’ve watched my four kids—who were all teenagers at the time of my diagnosis—grow up and launch into the world. One of the biggest changes of all though has been becoming a patient advocate, which to me has been one of the silver linings of having multiple myeloma.
Soon after diagnosis, I attended my first multiple myeloma support group meeting and found a community of people who understood the challenges of living day-to-day with myeloma. But this wonderful group of people also taught me to thrive by finding a healthy rhythm for each day. They taught me to laugh again and reminded me to take breaks from the hustle of daily life to recharge my batteries. I took over as support group leader for this group at the beginning of the Covid-19 pandemic, pivoting us to Zoom right when I was starting my second line of therapy. Our group has grown and evolved with time, and we now meet in a new location in a hybrid format. Yet, the one constant in our meeting time each month is that we always check in with each other and make sure that everyone is doing okay. We’ve become a family, and that steady connection of meeting monthly helps us all make the most of every day.
I am very excited to virtually attend the 66th American Society of Hematology (ASH) Annual Meeting as part of the International Myeloma Foundation (IMF) Myeloma Voices at ASH team. This will be my 4th year attending ASH, and for the second year in a row, I’m writing my pre-ASH blog while sitting in the infusion chair at my cancer center, getting my monthly dose of Darzalex (daratumumab) by IV infusion. I’ve brought along my crochet bag as well, thinking I might work on a baby blanket for a former student if I finish my blog. I like my monthly infusion time, it’s a time to rest and recharge, and I always spend it doing something that fills me up.
I can’t help but think, as I sit in this chair, that the steady rhythm of infusions and support group meetings that bring a healthy rhythm to my months are made possible because of the incredible fast pace of therapeutic development for multiple myeloma. Each year when I attend ASH, I report on new drugs in the pipeline, and it’s amazing that two CAR T-cell therapies and three bispecific antibodies have been FDA-approved in the past three years. This year at ASH, I’m hoping to learn more about how these therapies are performing in the real world, outside of the clinical trials that led to their approval. I’m also interested to learn more about how we are addressing unmet needs for patients who can’t access clinical trials, or who have high-risk disease, or who relapse after multiple therapies. I’m interested to learn more about how our own immune system plays a role in the success of these therapies. Finally, I’m hoping to learn more about how quality of life is considered in clinical trial design and how things like diet can impact therapy success. I’m grateful to the IMF and the industry sponsors who have made it possible for me to attend ASH again. Indeed, attending ASH has become part of the new rhythm of my life as a patient advocate, and I look forward to it each year.
Fun? Did I say having myeloma is fun? Well, of course having myeloma is not fun. But being a myeloma patient right now is exciting! And I have had fun with my fellow support group leaders, my support group members, and with my family this past year. Having myeloma doesn’t mean you can’t have fun! Time does goes by quickly. I can’t believe 1 year has gone by, and we are preparing for the 66th American Society of Hematology (ASH) Annual Meeting and Exposition. We will be in sunny San Diego again. As I type this, it is 23 degrees in Boise, Idaho. I am looking forward to warmer temperatures!
I am also looking forward to the new clinical trial data that will be presented this year. As a 13-year myeloma survivor, I am always interested in the new therapies for relapsed/refractory patients. Since we do not have a cure, yet, I am always looking at what my next treatment could be. I also like to bring information back to my support group. We have a diverse group of patients in all stages of myeloma treatment. And I look forward to sharing this information with them.
I am so grateful to the International Myeloma Foundation and our sponsors who make it possible for the Myeloma Voices at ASH team to attend #ASH2024. And I am honored to be chosen for this team. Please follow my fellow team members on social media and read their posts for more insight into ASH.
