I’m grateful to be part of this year’s IMF Myeloma Voices Team at #ASH24! I am one of the eleven myeloma patients on this Team. Each year, the Team consists of veteran leaders and new leaders to share their journey, experience, and excitement. This year, we are missing one of our fearless leaders, Jack Aiello. He has been our friend and mentor for over 20 years, and we will miss him here at ASH. We will carry forward the important work and information and Hope that Jack would want us to do. I can hear him saying to us . . . “Don’t screw up!” LOL.
Since I first started attending ASH many years ago, myeloma oral abstracts and posters at ASH have grown exponentially, At my first few ASH experiences, there were only a handful of myeloma abstracts. Dr. Vincent Rajkumar recently posted on X . . . “A medicine is a chemical and will stay so in the absence of clinical trials. No trial, no medicines.”
Thanks to the perseverance of all the researchers and pharmaceutical companies out there because we need more medicines! Don’t give up!
My focus is in the relapse setting to learn more about the next “lily pads” available to jump to.
ASH is mind blowing! Stay tuned for my vlogs—live from ASH as our Team reports to you.
It’s already “that most wonderful time of the year” . . . yes, the holidays, but with the holidays also comes ASH! If you live in the myeloma world, this is indeed a wonderful and hopeful time of year. It’s filled with the most brilliant researchers gathering to collaborate, learn, and share their most exciting work.
Personally, my heart grows a bit each year with increased anticipation, gratitude, and hope that what we hear and learn during these next few days will eventually bring us closer to cure, plus increased options with better Quality of Life, less toxicity, improved progression-free survival (PFS), longer overall survival (OS), and of course accessibility/affordability! Is my wish list too much? NO!
As a twenty-four-year care partner to my husband Michael, and with my work and friendships with patients and care partners across the U.S., it is not too much to ask. While our CoMMunity is fortunate and grateful for the incredible research that has already extended our lives, we must continue to push, to wish, to strive, and to accept nothing less.
Through the years, we have seen incredible interest and research in myeloma that has extended the average life expectancy from 3 years to over 10 years! We’ve had the fortunate opportunity to follow myeloma trials through the years, and then we went to Oncologic Drugs Advisory Committee (ODAC) for their review and recommendation to the U.S . Federal Drug Administration (FDA). We’ve testified at ODAC from a patient and care partner perspective that we must continue to advance treatment availability once the data supports its efficacy.
This reminds me of the very recent turning point: the ODAC unanimously voted in favor of minimal residual disease (MRD) testing as an early endpoint in myeloma clinical trials to support accelerated approvals of new treatments. Yesterday, we attended the IMF’s I2TEAMM (The International Independent Team for Endpoint Approval of Myeloma Minimal Residual Disease) meeting and heard updates. When asked “What is the next step after ODAC with FDA?”, Dr. Nikhil Munchi (Dana-Farber Cancer Institue — Boston) said, “We will not be done until myeloma is cured, and we don’t have a long time to go, I think it will be soon.”
Yes , It’s a Wonderful Time of the Year!
Stay tuned for the Myeloma Voices Vlogs (video reporting/blogs) at ASH and follow us on X (Twitter) with the hashtags #ASH24 #IMFASH24 #mmsm for more Hope!
Please also follow this incredible virtual and in-person #IMFASH24 Team on this website.
We started our day at 5:30 am by hopping on a shuttle to head over to the International Myeloma Working Group Breakfast sponsored by the IMF. I must say it was an extraordinary experience to be in the room with all the top Myeloma Doctors, listening to their research (which I can’t tell you about or I’d have to kill you…not really, that’s from a movie…but I can’t tell you)! What I can tell you is that this is a VERY dedicated group of physicians, and they are working hard to advance treatment in multiple myeloma (MM) for us all. We are in VERY GOOD hands! I’ve listened to so many of these specialists in webinars that I felt like I knew them! I had to remind myself that I indeed did not know them, but I thanked whomever I did talk to for the work they do! Some pretty exciting stuff in the pipeline: some of it will be reported on in the coming days, so I’ll try to get that to you all.
As for reporting on the actual conference today, I am going to leave that to a future blog so I can do it justice—but here are some key takeaways:
Darzalex (daratumumab) is awesome, and treating the newly diagnosed with quadruplets is the way to go!
Twenty-four-hour urine collections are very useful in initial screening, but they may not be necessary in later assessments.
There were a few abstracts speaking to quicker assessments in relapse, which one would hope will translate into quicker treatment of the patient.
There was an interesting abstract on the Influenza vaccine; it might benefit MM patients to do a three-dose series rather than the one vaccine, especially if you are on a CD38 monoclonal antibody like Darzalex (daratumumab).
IVIG (Intravenous immunoglobulin) reduces infections in patients treated with BCMA (B-cell maturation antigen) bispecific antibodies.
There were a few abstracts on minimal residual disease (MRD) testing, but I’ll write more on that next time!
And, the last abstract talked about measuring serum BCMA levels in non-secretory disease to monitor for disease progression—it showed some promising results.
That’s my abridged synopsis of day one. Please read this understanding that I am a myeloma patient telling you what I personally understood from all I listened to. I’ll write in a little more detail in the coming days. All in all, a GREAT experience and very heartening and comforting to see all that is being done to enhance the treatment of multiple myeloma patients!
The American Society of Hematology (ASH) 66th Annual Meeting and Exposition is in sunny San Diego again this year. The International Myeloma Foundation (IMF), with the assistance of some amazing donors and sponsors (J&J, Karyopharm, and Regeneron) has again brought a team to ASH comprised of 10 in-person and 5 virtual attendees; myeloma support group leaders, patients, care partners, nurses, and advocates. I have the honor and pleasure of leading the Virtual Team this year. It’s my fourth year attending ASH, and I’m continually blown away by the team’s drive for knowledge and their desire to share this knowledge with the greater myeloma coMMunity. To be frank, attending ASH is grueling—for both the in-person and virtual teams—extremely long days, organizing your daily schedule, attempting to juggle between simultaneous sessions, and just absorbing the immense amount of information provided. This Myeloma Voices at ASH team is enthusiastic, engaged, and excited about the program and brainstorming about all of the ways that they can share the information that they learn to the larger myeloma coMMunity.
In addition to our veteran members, we are excited to welcome some first-timers to our Myeloma Voices at ASH team this year.
@TerryGlassman is a nurse and patient with plasma cell leukemia. She is actively involved in the IMF’s Living with High-Risk special interest group and also started a myeloma support group on Long Island, where she lives. She is thoughtful and dedicated to gaining knowledge about her disease because it empowers her! “Knowledge is my best medicine.”
@salmon_rob is a myeloma patient and support group leader from the San Francisco Bay Area. He co-led the San Francisco Bay Area support group with Myeloma Voices at ASH expert veteran, Jack Aiello, whom we miss terribly. Rob has a passion to continue myeloma advocacy and education, as Jack did in the Bay Area and beyond. Rob’s voice this year will highlight working towards a brighter future for those living with myeloma.
@Jimjhs17 Jim Shoemaker is a seventeen-year myeloma survivor/patient and is passionate about supporting the myeloma coMMunity in Memphis, his hometown, and beyond. I love Jim’s quote that “I have been a student of this disease for many years now, and I feel God has called me to be a small part in helping others navigate this process and encouraging them to be their best advocates.”
@jwiework Jenn Wieworka, DNP, RN, OCN, serves as a Director of Support Groups, like myself, here at the IMF. With her rich history in nursing and academia, she brings new perspective and vision to the SG Team, and the Myeloma Voices at ASH team. Jenn’s passion for Diversity, Equity, and Inclusion (DEI) and quality of life (QOL) studies is palpable. I look forward to her impact on our team.
Don’t forget to follow the entire Myeloma Voices at ASH team on X and other social media platforms! Let the games begin!
