by Jason London | Dec 7, 2021 | Sue Massey
I’m honored to participate virtually in this year’s #ASH 21 conference! I am excited to learn about all the latest and greatest advances in myeloma therapies and treatments. My goal is to share that information with myeloma patients and their caregivers, especially those who have young children, to encourage and empower them on their myeloma journey.
In addition, I feel so thankful and blessed that the virtual format is still being utilized. It allows me to participate in a safe environment as well as manage my energy levels. We can still learn so much virtually! Thank you, IMF for not only allowing me to participate, but for keeping it virtual as well! #IMFASH21
Sue Massey, on Twitter: @Mmfamilies_IMF
by Jason London | Dec 7, 2021 | Sheri Baker
I can’t believe we are still here. And by here, I mean this: holding our support group meetings virtually, having our Support Group Leader Summit (SGLS) virtually, and attending the 63rd American Society of Hematology (ASH) Annual Meeting virtually. There is a saying, “the more things change, the more they stay the same.”
This year, ASH will be a combination of in-person and virtual. It should be interesting to watch the presentations. Maybe it will feel a little like being there, since there will be people in the auditoriums and meeting rooms. But I will, once again, be watching from home and will have my slippers on. I am still interested in new therapies for relapsed/refractory myeloma. And to see if there is any data on the role of a second autologous stem cell transplant for relapsed patients.
Once again, the International Myeloma Foundation (IMF) and our wonderful sponsors made this possible for us, as patients and advocates, to attend ASH. At the end of 2020, I remember thinking of all the things we would get to do in 2021, once we were vaccinated. When 2020 ended, I was ready to get back to normal. My plans changed.
Sheri Baker, on Twitter: @blondie1746
by Jason London | Dec 7, 2021 | Jessie Daw
Wow! I’m continually amazed by all top-notch doctors and researchers who focus on finding new and better approaches to deal with myeloma – whether in the active multiple myeloma space or the smoldering multiple myeloma space. As I was thrust (unceremoniously, I should add) into the world of myeloma five years ago, I’ve learned about the astonishing advances in myeloma treatment in recent years.
This year, I’m thrilled to be able to play a part in sharing latest research findings. I will be attending the 63rd American Society of Hematology (ASH) Annual Meeting virtually, as part of the International Myeloma Foundation’s patient advocacy team.
My focus at ASH will be in the smoldering multiple myeloma (SMM) space, where so much research has been happening in recent years. We’ve seen changes in the criteria used to determine progression (i.e., SLiM CRAB), as well as new indicators that help predict risk of progression (i.e., 2/20/20).
Those who were considered as high-risk now have treatment options, often but not necessarily with a trial that didn’t exist 5-10 years ago. Naturally, questions about when to start treatment and what treatments ought to be considered will arise.
As these questions are batted about by experts, I’m delighted to have the opportunity to bring a patient’s perspective and share with you the focus of the latest research along with what the researchers are finding.
A brief search of the 2021 ASH abstracts using “smoldering myeloma” as the keyword resulted in 50+ different sessions. Looking through these abstracts, I organized them, from my non-medical lay perspective, into five (5) categories. I’ve also included a selected presentation title from each category to give you an idea of the research that will be presented:
(a) Prevalence/demographics: Prevalence of Smoldering Multiple Myeloma: Results from the Iceland Screens, Treats, or Prevents Multiple Myeloma (iStopMM) Study.
(b) Risk identification/disease progression: Assessing the Prognostic Utility of the Mayo 2018 and IMWG 2020 Smoldering Multiple Myeloma Risk Stratification Scores When Applied Post Diagnosis.
(c) Treatments/preventing progression: A Phase II Trial of the Combination of Ixazomib, Lenalidomide, and Dexamethasone in High-Risk Smoldering Multiple Myeloma.
(d) Disease mechanisms: Identification of a Novel Epigenetic Mechanism of MYC Deregulation in Smoldering and Newly Diagnosed Multiple Myeloma Patients.
(e) COVID-19/vaccine related information: Monoclonal Gammopathy of Undetermined Significance and COVID-19: Results from the Population-Based Iceland Screens Treats or Prevents Multiple Myeloma Study (iStopMM).
There are also a handful of what I labeled “educational program sessions,” where smoldering myeloma is included within a session. One example is What’s New in Plasma Cell Disorders? I imagine these educational sessions are designed to highlight the latest research findings and to help bridge the research-to-practice gap for practitioners, but I’m not positive about that. Some also seem to focus in looking to the future, using current findings to help predict where myeloma treatment may be headed.
The research happening in this space is important and valuable to those with SMM. To me, it provides a sense of hope and optimism — two things that can sometimes be in short supply when dealing with the gray area of SMM.
While the standard of care for those diagnosed with SMM has been “watch and wait,” I can’t wait to listen, learn, connect with my IMF teammates, maybe interact with physician researchers (one can hope!), and also share the latest findings with you.
I will do my best, I promise. It is the least I can do. I am continually amazed and humbled by those who have committed so much time, energy, and expertise to advancing our understanding and knowledge of myeloma. Onward to ASH (virtually, of course)!
Jessie Daw, on Twitter: @Daw6Jessie
by Jason London | Dec 7, 2021 | Becky Bosley
The 63rd American Society of Hematology (ASH) Annual Meeting and Exposition is scheduled to begin on Saturday, December 11, 2021. Like last year, the International Myeloma Foundation (IMF) will participate virtually in the conference to ensure the safety of attendees.
As a first-time attendee, I have mixed feelings about doing the conference virtually. First and foremost, I trust and respect Dr. Durie’s decision to not physically send anyone to ASH this year due to the COVID-19 pandemic — even increasingly so, with the Omicron variant rearing its ugly head. I am grateful for that forethought of what I know was a very difficult decision for Dr. Durie to make.
I look forward to attending many more years of ASH – hopefully, in person in the near future. I have attended several other national conferences in person. There’s no other way to describe the energy of attendees in this type of gathering, other than electric!
There is such power in being surrounded by the world’s experts in hematology and people who share the same passion as yourself. There’s nothing like it and I will miss that electricity in the air, but I am looking forward to the networking and camaraderie between my fellow Support Leaders.
IMF’s SGL Correspondents for #ASH21 come from different backgrounds — some are patients, others are care partners, while some are healthcare professionals. However, all have an equal passion for myeloma research, advocacy, education, and outreach.
We will be blogging throughout the conference, as well as sharing updates on Twitter. There are HUNDREDS of myeloma-related abstracts this year to be presented at ASH. I am excited to delve into my share of these abstracts and share “hot-off-the-press” information with all of you! I am honored to join this amazing group of people in this journey!
Please follow each of us on Twitter to tap into all of our experiences with the information shared at ASH – below are all our Twitter handles.
Becky Bosley, RN MidAtlantic Region @MidAtlanticMSG
Jack Aiello San Francisco Bay Area @JackMAiello
Sheri Baker Boise, Idaho @blondie1746
Yelak Biru NW Arkansas @NorthTxMSG
Jessie Daw Sioux Falls, SD @Daw6Jessie
John DeFlice, MD Santa Fe, NM @johnde1MYELOMA
Linda Huguelet Chattanooga, TN @LindaMYELOMA
Sue Massey Virtual SG for Patients/CG with young children @Mmfamilies_IMF
Teresa Miceli, RN Rochester, MN @IMFnurseMYELOMA
Gail McCray Southside Atlanta, GA @IMFgailMYELOMA
Michael Tuohy Prospect, CT @IMFmikeMYELOMA
Robin Tuohy IMF, VP Support Groups @IMFsupport
Jill Zitzewitz, PhD Central MA @JillZitzewitz
Becky Bosley @MidAtlanticMSG
Becky Bosley, on Twitter @MidAtlanticMSG
by Jason London | Dec 7, 2021 | Jack Aiello
There is no other single conference where so much information is presented about myeloma. Information about so many topics is provided: how to treat MM patients in various stages; results of phase II & III trials which may indicate upcoming FDA approvals; treatment considerations of MGUS and smoldering MM patients; pre-clinical research focusing on myeloma targets and cell understanding; and more.
This year, the 63rd American Society of Hematology (ASH) meeting will be a “hybrid” meeting (combination of in-person in Atlanta and virtual via Zoom). I’ll be attending virtually which means that some of my meetings will start at 4am CA time (7am in Atlanta).
I’m so grateful to the International Myeloma Foundation (IMF) and their sponsors for registering me to attend, and I look forward to blogging about each day’s highlights. Finally, I’ll create a multi-page summary of the most interesting takeaways from my perspective and share this with my support group, post it on our website, and distribute to anyone else who requests it.
I attended my first ASH meeting 16 years ago and found it a bit like being diagnosed with myeloma 27 years ago. The terminology and amount of information was overwhelming. This was not surprising though, since the audience consisted of over 30,000 researchers and oncologists, who were learning the latest updates for all blood cancers, including myeloma.
I’ve learned to prepare a few weeks ahead of time and have already reviewed many of the myeloma abstracts while creating my personal agenda of talks that I wanted to view. These presentations are typically oral abstracts of clinical trial results, symposiums (case studies and various treatment considerations) and educational programs rather than biological lab studies.
Meetings I attend have more immediate value to patients undergoing treatment or to the newly diagnosed. By the way, you can also check out the abstracts (a summary of the planned presentations) by visiting www.hematology.org, although numerical details and conclusions of these abstracts are often updated during the actual presentations.
If you’ve been following new MM treatments the last few years, it’s been mostly focused on immunotherapies (treatments which help your own immune system to fight myeloma). This year’s ASH will have even more about mAb’s (monocloncal antibodies), ADC’s (Antibody Drug Conjugates), BiTEs (Bi-specific T-cell Engagers), and CAR-T therapies. I expect to hear updated trial results for all of these various therapies — in particular, BiTEs and CAR-Ts, and will be sharing this information with you.
I will be blogging every night during the Dec 10-13 ASH meeting and will be providing my takeaway highlights presented earlier that day. Along with several other patients/support group leaders the IMF brings to ASH, I look forward to sharing our experiences together via blogging and tweeting.
We hope to keep you well-informed through our individual patient perspectives. Of course, you’ll have other vehicles to learn from about ASH in the weeks to follow, including webinars, telephone conferences, seminars, and more. Maybe your own oncologist will be at ASH. Take advantage of these resources and become your own best patient advocate.
Jack Aiello, on Twitter @JackMAiello
