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IMF Holds First MM Interactive Patient/Family Seminar In Seattle

Dr. William Bensinger (left) and the Fred Hutchison Cancer Research Center graciously hosted the latest IMF Patient and Family Seminar, the first to use the new MM Interactive technology.  Dr. Bensinger was joined by (left to right) Drs. Durie (Cedars-Sinai Comprehensive Cancer Center, Gertz (Mayo Clinic), Kyle(Mayo Clinic) and Tricot(Arkansas Cancer Research Center.)
MM Interactive is an exciting way for myeloma patients to get involved at patient seminars. Participants are given key pads that allow them them to answer questions posed by the faculty.  Our first seminar using the new technology went very well.  The participants were involved in a way that had not before been possible and this interaction generated a lot of interesting discussion between the myeloma experts and the patients and family in attendance.  We also learned a lot about how we could use this technology to make the experience better for everyone and to gather valuable information for the benefit of the myeloma community.

The seminar began on Friday, with a meeting of the local support group, at which faculty members Bensinger, Durie and Kyle took the group through some of the basics and responded to questions.  This session was followed by a Quality of Life program led by Joanne Rochester, RN (left) and Jennifer Denson, LCSW (right), both from the Fred Hutchinson Cancer Research Center Transplant Team.  The session dealt with strategies for dealing with the physical and emotional challenges presented by myeloma, its symptoms and treatment.

(l to r) Barbara Dennison, Tom Blakney and Rich Dennison at the Friday night welcome dinner
Many participants joined us for the Friday evening welcome dinner, which provided an opportunity to socialize as well as sneak in a few questions for the doc's.  Attendees at the dinner also got an update on what's new at the IMF.  Awards were also presented to a number of generous donors who have helped the IMF bring its programs to the myeloma community.

Dr. Gertz goes over the "basics"

Saturday's seminar began with a review of "myeloma basics" by Dr. Morie Gertz of the Mayo Clinic. 
As part of the new MM Interactive program, participants were each given interactive keypads to allow them to "vote" on questions ranging from treatment strategies to emotional concerns. 
Faculty members (l to r) Kyle, Bensinger, Gertz, Tricot and Durie discuss front line treatment for myeloma.  On screen is audience response to question "What was the first treatment you received for myeloma?"  Results showed VAD as the most common treatment (38%), followed by melphalan/prednisone (MP at 22%), dexamethasone (9%), thalidomide with dexamethasone (7%).

Using wireless communications, we were able to ask questions and immediately display the results for the entire group to see.(left)  For many of the questions, the faculty discussed their views on the right answer after the audience had weighed in with their opinions. 

Faculty members discuss the role of testing patient bone marrow plasma cells  for deletion of chromosome 13 (right).  Less than 40% of the auduence thought that the test would help them with treatment decisions.

Responses to some of the questions were not very surprising.  For example, over 60% of the group reported that bone problems are what brought them into the doctor's office where they received their diagnosis.  Other questions yielded surprising results, prompted some extensive discussions.  For example, less than 40% of the group felt that testing for chromosome 13 would help them make treatment decisions.  Only a third of the group had either had a stem cell transplant or currently planned to have one.  Two-thirds said they would consider a transplant  or that they had ruled it out entirely.

All told, they audience answered some 50 questions during the course of the program.   We will be reporting on their answers in an upcoming issue of the minute and in Myeloma Today.  Stay tuned!

Patient panel members (l to r) John Schwartz and Rich Dennison share their experiences with the group

 Before lunch, a patient panel, consisting of Richard Dennison and John Schwartz shared their experiences with autologous stem cell transplants and mini-allo transplants.

Following sessions on Standard Therapy, High Dose Therapy (transplants), Bone Disease, Novel Approaches (with time out for bio-breaks and lunch) and emerging research, the group adjourned to the breakout groups.  The breakout groups give everyone a chance to get up close and personal with the faculty and ask questions of a more detailed and/or personal nature.  As always, people tended to move from room to room, taking advantage of the opportunity to consult with five of the world's top myeloma specialists in a single afternoon.

We thank our dedicated faculty for volunteering their time to be with us in Seattle.  We also thank the 160 patients and family members who attended for their help in making this first interactive seminar a success!  Our next seminar will be held in Los Angeles, January 24-25, 2003.

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