Having been diagnosed 17 years ago with multiple myeloma makes me a survivor, with an understanding that I am not cured of this disease. Yet, I am blessed to have experienced great progress since being diagnosed. From two chemo drugs, a stem cell transplant, and a few other therapies, so much has changed in the myeloma world. There are many more options for patients, both those who are newly diagnosed and those at relapse. One of the most important but challenging decisions is how to sequence these treatments. That is where the knowledge gained at ASH becomes valuable to the patient world. Being a first-time attendee at ASH, will make me feel like I am drinking from a fire hydrant. Information is coming at you fast and furious; but with the help of advocates from the International Myeloma Foundation, I will be a sponge and absorb information that will be beneficial to share with my support group in Memphis.
Having been in a trial for almost two years has shown me another side of my disease. The trial has taught me that no one is satisfied with existing treatment, but we are all truly looking for a better way of life and a cure for the patient. That is what makes ASH a true asset for those of us with a blood cancer.
As a person of faith, I have meditated many times on the scripture written by the Apostle Paul to the early church at Philippi: “Don’t worry about anything; instead, pray about everything; tell God your needs, and don’t forget to thank him for his answers.” Philippians 4:5
We’ve already had several meetings with our IMF teams and pharma partners. I’ve also been following two of my favorite myeloma docs: Dr. Vincent Rajkumar (@VincentRK) and Dr. Joe Mikhael (@jmikhaelmd), who always put out their lists of their most anticipated abstracts.
I was initially drawn to the one that said, basically, the 24-hour urine test is no longer recommended! I’m sure there are caveats or special case exceptions, but I think it will apply to many other #mmsm patients like me.
Come back to read more as the days unfold, and read my fellow #IMFASH24 bloggers. We try to follow the age-old advice of divide and conquer.
The 66th annual American Society of Hematology (ASH) meeting will officially begin December 7, 2024, in my favorite location of San Diego, California.
This meeting is the premier meeting for Hematologists. Scientific and clinical information, new and updated data from clinical trials are reported. The results from these clinical trials can lead to Food and Drug Administration (FDA) approval for new therapies. For example, at #ASH23, Dr. Pieter Sonneveld, MD, PhD, from Erasmus MC Cancer Institute, presented Late Breaking Abstract (LBA), Paper No: LBA-1: Phase 3 Randomized Study of Daratumumab (DARA) + Bortezomib, Lenalidomide, and Dexamethasone (VRd) Versus Vrd Alone in Patients (Pts) with Newly Diagnosed Multiple Myeloma (NDMM) Who Are Eligible for Autologous Stem Cell Transplantation (ASCT): Primary Results of the Perseus Trial. In 2024, there was a shift in standard of care therapy from VRd to Dara+VRd for those who are newly diagnosed with multiple myeloma and transplant eligible.
If you are new to the International Myeloma Foundation’s (IMF) Myeloma Voices at ASH, it is a remarkable program. Invited support group leaders (SGLs) attend this premier meeting, either in person or virtually, to learn firsthand the data and information that is being presented. As a group, we discuss the information, sharing our perspectives and the impact the information may have on the #myeloma #CoMMunity. Individually, we share this information through multiple social media platforms and with our support group members. One SGL has the potential to disseminate this information to thousands of people seeking #myeloma knowledge.
This year, the Myeloma Voices include veteran and “newbie” SGL attendees, each of them bringing their personal experience, topic of focus, and interest of their SG members. I have the privilege of joining this group as both a SGL and nurse liaison as a member of the IMF’s Nurse Leadership Board. I will work with this team to answer questions and help them digest the information presented. Undoubtedly, through their perspective as a patient, I will also gain new insights into the myeloma experience.
With the help of Jason London, Sr. Manager, Marketing & Communications at the IMF, we will capture these conversations to share on social media. Follow all of us on your preferred social media platform, watch our vlogs and read our blogs at http://ash2024blogs.myeloma.org/. We are all attending with the support of the IMF donors and sponsorship from Johnson & Jonson/Janssen Pharmaceuticals, Karyopharm Therapeutics and Regeneron Pharmaceuticals, and are thankful for their generosity.
You can follow us on social media to stay up to date on ASH happenings.
Sheri Baker @blondie1746 Yelak Biru @NorthTxMSG Becky Bosley @MidAtlanticMSG Barbara Davis @bkinoglu Jessie Daw @Daw6Jessie Oya Gilbert @HHHHFoundation Terry Glassman @TerryGlassman Linda Huguelet @LindaMyeloma Teresa Miceli @IMFnurseMyeloma Rob Salmon @salmon_rob Jim Shoemaker @JimJhs17 Michael Tuohy @IMFmikeMYELOMA Robin Tuohy @IMFsupport Jenn Wieworka @jwiework Jill Zitzewitz @JillZitzewitz
This year, the Myeloma Voice missing at ASH24 is that of Jack Aiello. For those who know Jack, you know his myeloma acumen matches that of a PhD, his myeloma patient advocacy is unmatched, and his absence is palpable. Jack has attended ASH for nearly two decades of his nearly 30 years living with myeloma, learning, advocating, sharing. I will miss our discussions, our banter, and our shared passion for myeloma knowledge.
Jack had a signature style at these medical meetings. He would go to the mic following an abstract or education presentation and calmly say, “I have two questions ….” Not that he needed the questions answered, but he wanted to create awareness and include the patient voice.
If you are new to Myeloma Voices at ASH or you have been following SGLs over the years, I have no doubt you will gather a few pearls of knowledge as we share our experiences. I encourage you to check out the abstracts and programs yourself. You can peruse and preview the content by searching key words of interest (i.e. myeloma). https://ash.confex.com/ash/2024/webprogram/start.html
Search social media for key hashtags: #MMSM #Myeloma #ASH24 #IMFASH24 Please join me (virtually) as we delve into exciting myeloma updates.
My best, Teresa Miceli, RN BSN OCN Nurse Liaison Support Group Leader IMF Nurse Leadership Board
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!
As a patient advocate, I’m thrilled to share that I’ll be attending the 66th American Society of Hematology (ASH) Annual Meeting conference as part of the International Myeloma Foundation’s “Myeloma Voices” team. The conference is being held in San Diego and virtually, and I’ll be attending virtually. My focus during the event will be on smoldering myeloma (SMM) and other precursor conditions—topics that are not only deeply personal to many but also increasingly critical in hematology research.
Why This Conference Matters
ASH is a cornerstone in the world of hematology, where the brightest minds come together to share groundbreaking research. For those of us invested in understanding SMM, the conference offers an invaluable opportunity to explore the latest findings and learn from experts. This is particularly vital given the current uncertainties surrounding SMM care.
Setting the Stage: The “Wild West” of SMM
The smoldering myeloma space has been described recently as the “wild west.” This stems from the ongoing questions about whether to treat SMM early or stick with the standard of care (SOC), which is watchful waiting or active surveillance. While clinical trials are testing early intervention approaches, some oncologists are beginning to treat patients outside of trials—a controversial move that raises concerns about patient safety and the need for evidence-based practice.
Goals for the Conference
At ASH, I plan to attend sessions dedicated to SMM and related precursor conditions. I’ll focus on topics like risk stratification and emerging treatment strategies for high-risk SMM. By diving into this research, I aim to better understand where the field is heading and what it means for patients navigating their own care decisions.
Advocacy and Information Sharing
Throughout the conference, I’ll be blogging and sharing updates on social media to bring the latest insights to patients, caregivers, and anyone interested in this space. My goal is to make this critical information more accessible while amplifying the patient voice in these important discussions.
Call to Action
I invite you to join me on this journey by following my blog and social media updates during the conference. Whether you’re a patient, a caregiver, or simply curious about SMM, I’d love to hear your thoughts and answer any questions that you have about the research being presented.
Closing Thoughts
Attending ASH as a patient advocate on the International Myeloma Foundation’s Myeloma Voices team is both an honor and a responsibility. I’m eager to learn, engage, and share as much as I can about the evolving science of SMM. Together, we can navigate this complex landscape with a shared commitment to evidence-based care and informed advocacy.
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.
