Robin Tuohy: So proud of all the support group leaders at #ASH14!

I hope all of you are reading the daily blogs and Tweets from our Social Media Team at ASH. This team consists of 10 myeloma patients, 1 nurse, and 1 caregiver (all of whom are also myeloma support group leaders).

So far, each day has begun with an early morning working breakfast where we review the educational and oral sessions we’ve attended. We also go over the day’s schedule to ensure we see/hear everything regarding myeloma. This can be quite a challenge when there are simultaneous myeloma oral sessions. For example, our Saturday schedule had three important simultaneous myeloma oral sessions.
• (25) Defining the Differentiation Stage of Multiple Myeloma Plasma Cells: Biological & Clinical Significance (Bruno Paiva)
• (31) Ibrutinib, Single Agent or in Combination with Dexamethasone, in Patients with Relapsed or Relapsed/Refractory Multiple Myeloma: Preliminary Phase 2 Results (Ravi Vij)
AND: in another Building:
• (43) Autologous Followed by Allogeneic Versus Tandem-Autologous Stem Cell Transplant in Newly Diagnosed FISH-del13q Myeloma (Stefan Knop)
PLUS: in yet another building, the all-important Ham Wasserman Lecture, “Multiple Myeloma: a modern model for scientific & clinical progress,” (Jesús San-Miguel) was presented.

The leaders rose to the challenge, and we divided and conquered! Please read the leaders blogs and tweets on the above and much more! http://ash2014blogs.myeloma.org/category/posts/

That was just a small portion of our Saturday. The leaders also attended a Media Reception and the IMF’s Annual Research Grant Awards. This is one of my favorite evenings at ASH! For details on this program, please read Michael Tuohy’s blog.

Sunday began with a working breakfast with Debbie Birns, IMF Medical Writer, and Teresa Miceli, nurse at Mayo Clinic Rochester in the bone marrow transplant (BMT) program and who’s worked with myeloma patients since 1991. Each provided a thorough review of the abstracts, explaining the very detailed medical information and translating it into something we could better understand so we are able to share this with our local support groups and communities once we get back home.

Sunday’s myeloma sessions were so crowded that the main room filled up 30 minutes prior to the session starting. The overflow rooms even filled up! The good news about this is that there is lots going on in our myeloma world. The bad news is that too many people were not able to get into the sessions. Hopefully next year, the ASH planners will assign larger rooms for the myeloma programs.

On Monday, our day began very early. The first myeloma session began at 7:00 am (which means we needed to be there at 6:30 am to get seats!)

We heard the orals on:
• 303 Pomalidomide, Cyclophosphamide, and Dexamethasone is Superior to Pomalidomide and Dexamethasone in Relapsed and Refractory Myeloma: Results of a Multicenter Randomized Phase II study (Rachid Baz)
Here’s what I tweeted on this:
As compared to Pom dex, Pom Cy Dex results
Superior RR ORR 65% vs 39%
Improvement in PFS & OS of borderline significance
• 304 Pomalidomide, Bortezomib and Dexamethasone (PVD) for Patients with Relapsed and Lenalidomide Refractory Multiple Myeloma (Martha Lacy)

To read more about other support group leader's experience at ASH 2014, please click here!