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.
Bensinger was joined by (left to right) Drs. Durie (Cedars-Sinai Comprehensive
Cancer Center, Gertz (Mayo Clinic), Kyle(Mayo Clinic) and Tricot(Arkansas Cancer
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.
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
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"
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
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
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
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.
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.
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
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!
next seminar will be held in Los Angeles, January 24-25, 2003.