I’m a newcomer to the American Society of Hematology (ASH) Meeting an Exposition as a patient representative, and I’m honored and terrified! I’m a 16-year survivor of myeloma, and my first transplant was exactly 16 years ago. At that time, in 2007, the standard of care was lenalidomide (Revlimid) and dexamethasone (Rd) followed by autologous transplant. I even had a course of high-dose dex, the treatment that most earlier patients had to endure. The transplant put me in very good partial response, and maintenance was not encouraged so I didn’t push for it.

I joined the Stillwater, Minnesota, support group in 2007, weeks after I was diagnosed, and knew only that I thought I would die in 3-5 years (Thank you, Dr. Google). Around 2010, I answered our Support Group Leader’s request for help leading the group, and gradually did more and more as he stepped away. I’ve been leading the group on my own for the last several years. In 2013 I relapsed, and a second transplant was recommended since I responded well to the first one. I was initially on Cytoxin (cyclophosphomide), Velcade (bortezomib), and dex (cyBorD). I tried to be on maintenance after the transplant, but my liver really did not like Rev. For that reason, I’ve been off treatment for over 5 years, and still on nothing (my favorite treatment). My IgA lambda myeloma responded very well to the second transplant, with no detectable disease at this time. Oddly enough, I’ve now developed an IgG kappa monoclonal gammopathy of unknown significance (MGUS). You know I’ll be keeping an eye on the MGUS reports🤓.

In reviewing many of the hundreds of abstracts for this 65th conference, I can see just how far out of my depth I am! In addition to learning many new medical and research terms, I’m also learning more about X (aka Twitter). I’ll be following the excellent advice of our guides Teresa Miceli, RN, and Joseph Mikhael, MD, on what sessions to attend and what will be so far over my head so I’ll skip those. I hope to hear more about the bi- and tri-specifics and any new treatment protocols for MGUS. I’m happy to be attending virtually, from the comfort of my home office. Many thanks to the IMF for inviting me to join other Support Group Leaders in reporting on this globally important conference. And many thanks too for the support from our pharmaceutical sponsors: Janssen, Karyopharm, Takeda Oncology, Bristol Myers Squibb, and Regeneron.

— Barb Davis

Follow me on X (Twitter) Barb (@bkinoglu) / X (twitter.com)

Stillwater, Minnesota Support Group site