In my last blog for #IMFASH23, I’ve decided to share a few of the videos and photos I took over the last week providing you with a variety of experiences, perspectives, and my “bird’s eye view” of leaders engaged at #ASH23.
Leaders were “flies on the wall” to listen and absorb the International Myeloma Working Group’s Breakfast Meeting.
In this vlog, watch Oya Gilbert, a first-time leader’s impression. It’s powerful!
“I close my eyes and just listened . . .”
At one of the leaders’ Working Group Meetings, Jack Aiello shared his question on one of the Mass Spectrometry abstract presentations. The discussion surrounded how accurate is mass spectrometry, what is the depth of response of mass spec, and how well does it correlate with the bone marrow biopsy test? One point was that it gets more accurate over time and looked at the correlation at 18 months. As a patient, Jack does not think we can wait 18 months. Good for researchers to hear this and other important patient perspectives!
I was excited on Sunday evening to go to the Poster Hall and view MANY posters, and one of my favorites was Poster #3335 “Assessment of Multiple Myeloma Related Burden on Caregivers – A Portuguese National Study.” To my great surprise, two of the investigators (Carlos Costa, MD; and Cristina Joao, MD, MsC, PhD) were there and shared with me their important work. Some key data was the following:
- 3 out of 4 caregivers are women
- Frail patients (not older!) have more need of caregiver than the non-frail
- The burden is higher in particular dimensions, such as implications in personal life, family support, and financial burden.
Some of my favorite photos of these in-person and virtual leaders:
Finally, as I close, it is with gratitude to the following:
- The virtual and in-person leaders for their dedication and time to (1) lead their own local myeloma support group(s) and (2) volunteer themselves to attend and share their perspectives as myeloma patients, care partners, nurses, and leaders.
- The IMF staff who helped to make this program happen with special thanks to Dr. Brian Durie, Dr. Joseph Mikhael, Becky Bosley, Teresa Miceli, Cecilia Romero, Jonathan Fitzpatrick, Sapna Kumar, Miko Santos, Jason London, Diane Moran, and Yelak Biru.
- The support for Myeloma Support Group Leader Voices program: Bristol Myers Squibb, Janssen, Karyopharm, Regeneron, and Takeda Oncology.
- To all the patients that participate in clinical trials to help advance treatment options.
- To all the researchers that dedicate their lives to finding new treatments as there is still more work to do . . . Until we find a Cure.