Myeloma Survivors and Patient Advocates Attend the 2022 ASH Annual Meeting and Exposition

Leaders of myeloma support groups share their takeaways 

By Robin Tuohy, IMF Vice President, Support Groups 

 

Each December, the IMF brings a team of myeloma support group leaders and patient advocates to the Annual Meeting & Exposition of the American Society of Hematology (ASH). In many ways, the 2022 meeting of ASH was the most exciting to date: more than 1,000 myeloma-related abstracts, presentations by key opinion leaders, auxiliary meetings of the IMF’s International Myeloma Working Group (IMWG) and the IMF’s Black Swan Research Initiative® (BSRI®), and the camaraderie among members of our team who made the most of this unique opportunity both virtually and in-person! 

To learn about research presented at ASH 2022, read the overviews by Dr. Brian G.M. Durie and Dr. Joseph R. Mikhael. In this column, I would like to highlight some of the insights by members of the support group leaders team shared during ASH via blogs at ash2022blogs.myeloma.org, Twitter hashtag #IMFASH22, Facebook, and videos: 

 

“This was my 17th year attending ASH. The 2022 ASH meeting continued to amaze me with so many studies in all stages of myeloma, with tremendous advances being made.” 

– Jack Aiello, 28-year myeloma survivor 

 

“I witnessed first-hand the commitment of the myeloma doctors who are working to find better treatments and a cure. Their research gives me hope, which I can bring back to my support group.” 

– Sheri Baker, 11-year myeloma survivor 

 

“ASH attendance by patients, care partners, advocates, and nurses means that important medical information is reaching and empowering tons of myeloma patients around the world! When patients and researchers meet each other, it opens an opportunity for a dialogue. They learn as much from us as we learn from them!” 

– Becky Bosley, OCN 

 

“Those of us with SMM live with our own set of questions and unknowns, and our own anxieties. By sharing what I learned with other SMM patients, I hope to give them useful information about our diagnosis and possible journey ahead.” 

– Jessie Daw, smoldering multiple myeloma (SMM) 

 

“I so appreciate the IMF and its tireless staff that made it possible for me to observe outstanding myeloma experts who are doing groundbreaking research, and to strengthen our sense of community and reassurance as we make our way through this difficult journey.” 

– Dr. John DeFlice, 10-year myeloma survivor, retired gastroenterologist 

 

“In 2013, I attended ASH for my first time. Over the last 10 years, myeloma research has advanced immeasurably, bringing great promise and hope to myeloma patients like me.” 

– Linda Huguelet, panelist in Dr. Durie’s webinar 

 

“The synergy in myeloma research at ASH was profound. The calls for diversity, equity, and inclusion in healthcare for people of color are being heard. Now I’m better equipped to effectively advocate and support patients and care partners. I am grateful to the IMF for investing in me, and I will look to pay it forward.” 

– Diane Hunter, first-time ASH attendee 

 

“I was diagnosed in 2016 at age 32. In the years since then, I have fought myeloma as hard as I could, and have tried to live a life not controlled by cancer. I’ve had an allogeneic transplant, CAR T-cell therapy, and other lines of treatment all while living my life to the fullest. Now I have 3 children and I co-lead a local myeloma support group. I hope to inspire other myeloma patients to live life fully.” 

– Nick Lenoir, panelist in Dr. Durie’s webinar 

 

“Attending ASH with the IMF is an immersion into the best of international myeloma research with expert navigation by Dr. Durie and Dr. Mikhael. Thanks to Robin and her team, we had an optimal learning experience. I am humbled to be a part of this team.” 

– Gail G. McCray, 15-year myeloma survivor, Community Health Educator 

 

“Attending ASH brought home how far the myeloma research landscape has come since I became a nurse in 1991. But with new treatments come new challenges. What to use when? Whose myeloma will respond to what drugs? Clinical trials are the best objective measure of how to answer these questions.” 

– Teresa Miceli, RN, BSN, OCN 

 

“I was diagnosed in 2000 at age 36 and have attended ASH every year since the IMF made it possible. The myeloma treatment landscape is continuously evolving. Living well with myeloma entails learning about your disease, appreciating the importance of having an informed dialogue about your myeloma with your healthcare team, and maintaining hope for the future.” 

– Michael Tuohy, 23-year myeloma survivor 

 

“Attending ASH these past two years as a patient advocate has been one of the silver linings of having myeloma, helping me think of more ways to use my science skills and educational focus to help other patients. I’m so incredibly grateful for all the IMF does!” 

– Jill Zitzewitz, PhD 

 

Each year, it is my honor and privilege to lead a team of support group leaders at ASH. This year, Jessie Daw called us a #FaMMily and I couldn’t agree more. We are all in this together, supporting each other. On behalf of the IMF, I would like to express my thanks to our team of ASH 2022 patient advocates for their commitment to the myeloma community, and together we all would like to express our thanks to the IMF’s industry partners who supported our ASH attendance: Amgen, Karyopharm Therapeutics, and Takeda Oncology.

For information about joining a local myeloma support group, or launching one in your area, please contact Robin Tuohy at [email protected] or visit myeloma.org/support-groups. 

 

(This article was published in the 2023 Winter Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)