We are international

2006 IMF Support Group Leaders’ Retreat
By Maddie Hunter

Take red wine, dark chocolate, donuts, and custom chips. Mix in people from 4 European countries, 5 Canadian provinces, and 18 US states, along with stellar IMF staff and Board members, plus 1 psychotherapist. Cook at about 100F degrees in an Arizona resort and you have the 7th annual IMF Support Group Leaders' Retreat. What a recipe for success!

During the weekend of May 19—21, 2006, representatives of over 55 support groups came together at the Scottsdale Plaza Resort to learn, share, express, and inquire. We came to hear the latest news from the myeloma treatment front, to share tips for making our groups more effective, and to explore the emotional challenges of staying hopeful. Susie Novis and Dr. Brian Durie were our grand chefs, welcoming us as a global group and urging us to see the retreat as an opportunity to learn from one another. We did just that. During the retreat sessions, over dinner or during the breaks, we mixed and laughed! New friendships were made and old ones renewed.

During our first afternoon together sous chef, Robin Tuohy, (Regional director Support Groups—Northeast US) used her characteristic flare to remind us of all the ways that the IMF lives the belief that "Knowledge is Power." Robin reviewed the 42 free IMF publications available to keep the patient community informed. Over 125,000 people benefit from the IMF's outreach in 85 domestic and 73 international support groups!

The next course in our Friday afternoon featured the duo of Drs. Brian Durie and Jim Omel. The topic was "Osteonecrosis of the Jaw" (ONJ) . We were offered a sneak preview of a soon-to-be-released precautionary video on ONJ jointly created by Novartis and IMF. Dr. Jim Omel told his compelling story of ONJ. Although Jim has come to see his jaw damage as linked to Zometa® treatments, he cautioned us to keep the use of bisphosphonates in perspective. Both doctors advocated for clearer guidelines to be developed for safer bisphosphonate use. Information on ONJ is changing quickly so we were urged to watch for more specific information in the near future.

A picture of a sun rising over mountains introduced our last course for the afternoon—The Greater Vancouver Multiple Myeloma Support Group. Francesca Plaster, the group leader, came accompanied by her group via a touching DVD photo gallery. She treated us to the story of how her support group grew since 2005 through their slogan "Impossible is nothing." Guided by the desire to create meetings that were as warm and inviting as being in her home for dinner, Francesca and her group have developed a mentor program for patients, along with a visitation program for both inpatient and outpatient units. Their 2006-2007 plan includes enhancing the group's website, www.myelomavancover.ca, developing a patient lending library, and expanding the mentor program.

First on the menu for Saturday was Dr. Durie's update from the IMF Scientific Advisors's retreat. We savored every word of hope that Dr. Durie offered. The sweet finale of Dr. Durie's comments came with his suggestion that red wine, dark chocolate and stress management may be beneficial to those with myeloma!!! We were ready to respond to this news immediately, but held off for the lovely cocktail hour and dinner awaiting us later in the day!

Two concurrent breakout sessions were served up next: Medicare Part D update and Canadian support Groups. Lisa Crist (Reimbursement Director, Ortho Biotech) described the history of Medicare Part D and shared her perspective about the challenges of this program for physicians and patients. Pertaining to the infamous "donut" or "bagel" gap in Medicare coverage, Lisa made some suggestions including working with our physicians to get some of the more expensive medications treated as a medical expense versus a pharmaceutical Part D expense. Many more details were given and, for this author, another serving is needed to have this complex topic become more clear.

Dished up next was Stephen Gendel, IMF's Public Relations Executive. With his deep expertise in the news business, Stephen shared his intent to help us get myeloma added attention in the media. In Stephen's recipe for success, his main ingredient is the "hook"—the message that is new, important, relevant, and can carry impact beyond the myeloma community. He encouraged us to branch out with our local media sources. He urged us to create a personal face on each story, and offered ideas for materials and contact to use. Stephen is a great new resource for us to leverage!

During the afternoon breakout sessions, Susie Novis gathered caregivers for a private dialogue and Mike Katz (NY and White Plains Support Group Leader) led a focus group on future clinical trials. At the clinical trial discussion, physicians from the Eastern Cooperative Oncology Group (ECOG) called in to hear our comments about proposed trials. Suggestions included questions of proper administration of bisphosphonates, how to apply genetic understanding to treatment options, and advantages of treatment versus transplant. Additionally, seven ECOG trial concepts were offered for our reaction. We answered whether we thought the trial addressed something important, who would want to enroll, why someone would not want to enroll, and what would make the trial more attractive. It was exciting to hear how the results of last year's feedback to ECOG shaped this year's trials.

Next to take the job of stirring us was psychotherapist and author, Greg Pacini, whose focus is on issues beyond diagnosis for cancer survivors and their caregivers. He addresses the emotional aspects of being a member of the myeloma community. He engaged us in a discussion of the ups and downs of being a support group leader. We spoke of challenges around facilitating discussions when members have different needs, advocate for specific solutions, or have strong emotional reactions in the moment. Greg encouraged us to be clear about the type of group we want to create.

Dinnertime on Saturday brought us the inspiration and encouragement of IMF board member and myeloma patient, Tom Bay. He reminded us of the choice we have to soar like an eagle as we walk the myeloma path and generously offered us insights from his life. The flavor Tom added to our evening brought zest to the end of our day.

Sunday, our last day together, began with Mike Katz updating us on the Bank On A Cure® program. The UK and US labs, supported by the arrival of a new custom computer chip, are ready to begin the complex analyses of donated tissue. Through the added cooperation of ECOG, the IMF has been given access to large number of additional clinical trial databases that will offer many more samples for analyses. Additional funding is being sought to support this project.

Tom Courbat, leader from California, encouraged all groups to become more aware of the benefits available to patients. Susie reminded us that the transportation grants for the leaders' retreat were made possible by the Marx family, and we all acknowledged thanks to Jennifer Greunberg and her family for their generosity.

By mid morning, the retreat was coming to an end and the consensus was that it had definitely reached "well done"! The retreat recipe this year strengthened our community and enabled us to cook up more ideas together. Thanks to the IMF and to all of us who continue to hold together "until there is a cure."

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