Heads up: this blog will not contain any specific abstract information, but rather to give you a bit of history and flavor of the daily schedules for leaders volunteering their time selflessly to bring you their patient perspectives. Please read their blogs for specific abstracts and interests.

All abstracts are released by the American Society of Hematology (ASH) on November 4. Dr. Brian G.M. Durie, IMF Chief Scientific Officer and Chairman of the Board, provides us with his selected oral and poster abstracts and special educational sessions/meetings. Dr. Joseph Mikhael, IMF Chief Medical Officer, provides us with guidelines to the abstracts. Leaders certainly have their homework to do PRE-ASH to make the most of ASH.

Of the more than 3,000 abstracts presented at the 2022 ASH meeting, 1,041 were related to multiple myeloma!

The International Myeloma Foundation has been bringing patients / support group leaders to the ASH since 2006! Here is the first #IMFASH Support Group Leader Team . . . we were so young!

It has been my honor and privilege to continue to lead a group of leaders each year for the IMF and this year’s team has bonded and become “FaMMily.” I love this word and want to give credit to #IMFASH22 team member Jessie Daw for coming up with it. This also comes on the heels of Teresa Miceli stating that her group members and the extended myeloma community are “my people.” We truly do become a family and we are all in this together supporting each other.

This year marks another milestone as it was the 1st IMF hybrid style ASH program. With utmost concern for patient health and safety, Dr. Brian Durie and Yelak Biru, IMF President and CEO approved leaders to engage in ASH in-person and virtually.

The #IMFASH22 Support Group Leader Team is a diverse group from all parts of the U.S. with varying disease states from smoldering multiple myeloma (SMM) to relapse/refractory (RR). We have a core team of experienced leaders that have attended ASH in the past with the IMF as well as two first timers joining us to have this experience to share. Here is the link where you can read all the leader’s blogs and follow them on Twitter: https://ash2022blogs.myeloma.org

I highly encourage you to take your time and read each of these blogs to hear the patient perspective which is unique. These leaders took the time from our very busy days to write and share what they found exciting and hopeful.

In-Person Leaders – Up Early and Ready to Go!

Leader’s days at ASH were long and strenuous mentally and physically. Most days we were up and out by 6:00 a.m. to get to the New Orleans Convention Center in time to get a seat for the oral abstract presentations.

Here’s a snippet of the leaders schedule (in-person and virtual):

Friday, December 9:

Hybrid Breakfast Orientation: with all in-person and virtual leaders meeting via zoom to review and ask questions for the days ahead (leaders also participated in a PRE-ASH meeting as well to learn more about engaging via social media while at ASH). We were also joined at this meeting by Dr. Mikhael, to help us navigate through which abstracts may be most understandable for us to attend. This is especially appreciated when there are multiple simultaneous abstract presentations happening. Teresa Miceli, RN, BSN, OCN and member of the IMF Nurse Leadership Board, has been a part of the IMF ASH Team for many years and is available for constant Q&A whether we are walking in between sessions, or in an official working group meeting.

IMF Satellite Symposium: “A Conversation with the Myeloma Experts: Making Sense of the Evolving Treatment Landscape”
Program Chair: Brian G.M. Durie, MD
Speakers: Shaji K Kumar, MD; Thomas Martin, MD; Jesús San-Miguel, MD, PhD; Philippe Moreau, MD; and S. Vincent Rajkumar, MD
Topics for discussion:

  • How to determine risk of progression for smoldering MM
  • When to treat patients with smoldering MM
  • Optimal induction therapy for “average” patients with newly diagnosed MM; patient/disease factors changing treatment approaches
  • Ideal duration of therapy for first-line MM
  • Selecting therapy at first relapse
  • Individualizing therapy for an “average” patient after multiple relapses; patient/disease factors changing treatment approaches
  • Therapy considerations after BCMA-targeted treatment
  • Review of 2023 myeloma treatment algorithm

I am sure a number of the leaders have written blogs and had many Tweets on all of the above for you to review in depth on the link I provided.

Saturday, December 10

Another early start with leaders having the opportunity to be a “fly on the wall” and observing the International Myeloma Working Group (IMWG) Breakfast meeting. This Group emerged from the IMF’s Scientific Advisory Board which was established in 1995. The collaboration of these myeloma experts is crucial with research and producing consensus guidelines for the myeloma community. Learn more about the IMWG here.

I nicknamed today “Simultaneous Saturday” as we had to choose from:

  • 3 morning Simultaneous Abstracts plus an Education Session from 9:30 – 11:00 a.m.;
  • 2 early afternoon Simultaneous Abstracts from 2:00 – 3:30 p.m.;
  • 3 late afternoon Simultaneous Abstracts and an Education Session from 4:00 – 5:30 p.m.

Plus others in between! We did not have time for Poster Sessions today, however, with the ASH badges, leaders are able to go to the ASH website and replay all oral abstracts and view posters. We enjoyed a dinner with members of the Takeda team who were one of the sponsors bringing leaders to ASH.

Sunday, December 11

Leaders had a “grab-n-go” breakfast (picking up healthy snacks to bring with them) and attended abstracts from 9:30 am – 6:00 pm. We also had a meeting with Karyopharm, another sponsor for bringing IMF support group leaders to ASH. The discussion and engagement with patients to understand their perspective and importance of experiencing ASH was enlightening for all in attendance. In the evening we were honored to attend the “CURE – Multiple Myeloma Heroes and Awards Ceremony.”

Monday, December 12

Leaders had a working lunch with in-person and virtual teams coming together through Zoom. We were joined by Dr. Mikhael to lead our discussion on key abstracts we’ve already attended as well as what to focus on for Monday and his pearls of wisdom.

Monday was a very long day to say the least! It’s exhausting, especially after three days of listening and trying to understand very scientific language. There were, again, two morning simultaneous abstracts followed by 3 simultaneous abstracts with the day ending at 6:00 pm. In person and virtual leaders met one last time for a pizza party/working wrap up meeting discussing all we’ve gathered and asking questions to our nurse extraordinaire Teresa Miceli.

Here is our virtual #IMFASH22 Team with Dr. Mikhael at one of our working meetings:

To sum it up, on behalf of the entire IMF Staff Team, we are grateful and in awe of the leaders that dedicate themselves to attending ASH and sharing with their local communities in addition to the global myeloma community through social media. Please join me in thanking and congratulating each of these outstanding leaders:

  • Jack Aiello – Multiple Myeloma Support for the San Francisco Bay Area (San Francisco, CA)
  • Sheri Baker – Treasure Valley Multiple Myeloma Support Group (Boise, ID)
  • Becky Bosley – Mid Atlantic Myeloma Information and Support Group Leader (Baltimore, MD)
  • Jessie Daw – Eastern South Dakota Multiple Myeloma Support Group (Sioux Falls, SD)
  • John DeFlice – Land of Enchantment Myeloma Support Group (Santa Fe, NM) AND the virtual Las Voces de Mieloma Spanish speaking group
  • Linda Huguelet – Chattanooga Area Multiple Myeloma Networking Group (Chattanooga, TN)
  • Diane Hunter – Montgomery Area Support Group (Montgomery, AL)
  • Nick Lenoir – Nature Coast Florida Multiple Myeloma Support Group (Brooksville, FL)
  • Gail McCray – Southside Atlanta MM Support Group (Atlanta, GA)
  • Teresa Miceli, RN, BSN, OCN – Multiple Myeloma Sharing Sessions (Rochester, MN)
  • Michael Tuohy – Connecticut Multiple Myeloma Fighters Information Group (Prospect, CT)
  • Jill Zitzewitz, PhD – Central MA Multiple Myeloma Support Group (Shrewsbury, MA)
  • And me!

Happy to go home and happy to say that we stayed healthy during our in-person ASH experience. Thank you to the International Myeloma Foundation and the sponsors for this program: Amgen, Karyopharm and Takeda Oncology.

Happy Holidays and Wishing each of you a Healthy New Year filled with Hope!

Robin Tuohy
P.S. Just for fun, I’m going to go with Michael’s theme of bringing music into a blog

“We Are FaMMily” by Sister Sledge, 1979!