By Robin Tuohy
Waterbury, CT

Since 2006, the IMF has been bringing a group of myeloma support group leaders to the American Society of Hematology (ASH) Annual Meeting. This unprecedented program enables support group leaders to bring back vital information to their local myeloma communities. Communication is key in myeloma, so I encourage each of you to read all the blogs and follow us on twitter to better understand what’s happening at ASH in our myeloma world and to have conversations with your healthcare team on the latest treatment updates.

This year, out of the 800-plus myeloma abstracts that will be presented at ASH, Dr. Durie and Debbie Birns have outlined a very specific program for us to follow each day. Here is a summary of what we’ll be attending and what you can expect us to report to on:

The Support Group Leaders ASH Team will begin each day with a working breakfast where we will be provided with an overview by Teresa Miceli, RN, BSN, OCN.

Friday, December 5th is going to start off with one of the most important educational programs of the entire weekend. The IMF’s satellite symposium on “Critical Issues Need Answers: Providing Best Options for Myeloma in 2014” is sure to help us all better understand and treat myeloma. It will be a “debate” in the best sense of the word with top myeloma experts providing their opinions on a range of topics. Please make sure to follow this live or the recording which will be on the IMF’s website:

On Saturday, December 6th the Support Group Leaders ASH Team will start the day with some of them attending the International Myeloma Working Group’s Breakfast to hear what they are collaborating on. This is always a very exciting program that leaders are eager to attend and report on. Throughout the morning and afternoon, there will be oral sessions providing updates on trials for Newly Diagnosed MM, Amyloidosis, and POEMS Syndrome.

Saturday evening is one of my favorite nights at ASH. The IMF invites the support group leaders to attend the Brian D. Novis Research Grant Awards. These annual awards were established in 1994 to promote research into better treatments, management, prevention and a cure. This evening is very inspirational, with patients sharing their journey with myeloma followed by the presentation of awards. This is an uplifting evening with patients rubbing elbows with researchers and able to talk to them about their work; and for researchers to meet patients and to better understand the urgency and importance of what they do in the lab each day.

Sunday, December 7th is filled oral and poster sessions, this time focusing on MM transplant, newly diagnosed, and also in the relapsed/refractory setting, including the Multicenter Phase 3 ASPIRE Study comparing carfilzomib, lenalidomide, dexamethasone versus lenalidomide and dexamethasone (#79.) There will also be an oral presentation on comparing sequential versus alternating bortezomib, melphalan, prednisone and lenalidomide plus dexamethasone in elderly patients (#179).

Monday, December 8th will start bright and early with myeloma oral sessions beginning at 7:00 AM and going throughout the day. Monday evening, the leaders will listen to the live IMWG conference series at 8:00 pm PT with Drs. Joseph Mikhael, Ola Landgren, and Antonio Palumbo discussing the most important concerns for myeloma practitioners and patients based on this year’s ASH updates. I highly encourage you to listen in to this live broadcast at

Throughout the weekend, leaders will also sit on Patient Panels to share their views on clinical trials, side effects, and what’s important from a patient/caregiver perspective for our future.

Please stay tuned to the IMF website each day for updates and follow our leaders on Twitter. This is sure to be another year chock full of hope with each new treatment option available that brings us closer to a cure.

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