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Fall 2005 Volume 6, Issue 6:
Sixth Annual Support Group Leader Retreat
By Robin Tuohy
The word "Retreat" is defined in various ways: (1) an act or process of withdrawing especially from what is difficult or dangerous, and also (2) a period of group withdrawal for meditation, study, and instruction under a director. Well, I would have

The word "Retreat" is defined in various ways: (1) an act or process of withdrawing especially from what is difficult or dangerous, and also (2) a period of group withdrawal for meditation, study, and instruction under a director. Well, I would have to say that the IMF's retreat is a combination of both. Under the direction of our Untiring Leaders, Dr. Brian Durie and Susie Novis, we were well fed, thoroughly educated, and delightfully entertained (not to mention exhausted by Sunday)!

For those of you who have not yet had the pleasure of attending the Retreat, I can tell you that it is like a family reunion. As in our own families, our "myeloma family" is one that we did not choose--but we care and want to help each other in our journey. To those with whom we have become close, we give hugs and catch up; to those we've just met, we give hugs and learn about each other. We are all together in this with a common bond: multiple myeloma and how to fight the beast.

The weekend began on Friday afternoon with Dr. Durie conducting an informative question and answer session with the leaders and detailing important support issues in 2005. We learned what the IMF has to offer to support groups, and then launched into standard and new diagnostic tests, updates on Revlimid®, VELCADE®, and AnorMed's new stem cell mobilizer, AMD-3100. It was a total "A to Z" on myeloma from staging and initial diagnosis to relapsed disease and what choices we now have. We then enjoyed cocktails, dinner, and a movie—"The IMF Research Initiatives"— DVD, which focuses on Bank on a Cure®, Circulating DNA, and Proteomics. Greg Brozeit spoke with us regarding advocacy issues and how we can participate effectively. His main message is that all cancer groups need to work together to get things accomplished in Washington.

Saturday was jam packed with presentations. We were told later in the day that there are only 1440 minutes in a day (and we used each one of them)! Susie began the day with introductions and a heartfelt welcome.

Our first presenter was Vicki Anderson-Ferraro, leader of the Miami Multiple Myeloma Networking Group. Vicki spoke on "Starting and Maintaining a Support Group." There are many recipes for success and each leader needs to evaluate his or her own situation and assess the many ideas shared to determine which ones would work best. Vicki discussed the importance of determining and meeting the needs of the members, identifying co-leaders, and developing partnerships with various organizations. Vicki left us with this question: If you don't know what you want to accomplish, how will you monitor and measure your progress?

Marcia and Jerry Sawyer, co-leaders with the North Texas Myeloma Support Group, gave a presentation on "Communications: Newsletters and Websites." Their group uses a combination of a detailed website, newcomer packets, and newsletters. Additionally they now have a "patient voice mail" telephone number to enable information seekers to contact them (972) 504-6307. Check out their website at www.northtexas.myeloma.org/newsletters.html.
Chuck Koval, leader of the Madison, Wisconsin Support Group collaborated with the Racine and Milwaukee support groups in a "Collective Group Seminar." This was the first of its kind: a statewide education day for multiple myeloma! The Madison, Racine, and Milwaukee support groups were all involved in this project and worked with various organizations to make it a success. They are already planning next year's event for November 5, so if you are in the area please stop by to see what it's all about!

Mike Katz, co-leader of groups in Manhattan and White Plains, conducted a clinical trial discussion conference call with ECOG Myeloma Committee Investigators (Drs. Phil Greipp, David Vesole, Morie Gertz, Rafael Fonseca, Vincent Rajkumar, Angela Dispenzieri, and co-chair Mary Lou Smith). Currently, ECOG has more than 90 active clinical trials in all types of adult malignancies. The objectives of this session were to provide patient perspectives on the most important questions that need to be answered with clinical trials and to comment upon concepts for a potential trial currently under discussion. We learned that it takes a long time to get a trial designed, approved, completed, and analyzed—so we want to get it right! This was the second year that the group participated in a clinical trial teleconference.

Dr. Dixie Esseltine from Millennium Pharmaceuticals updated us on the latest multi-center clinical trial with VELCADE, which resulted in expanded FDA approval for Velcade as second-line therapy. She discussed the management of VELCADE-induced peripheral neuropathy and reviewed the research demonstrating VELCADE's efficacy when it is combined with other drugs, particularly chemotherapy agents and dexamethasone. Of particular note was the information that VELCADE is effective even for patients who have chromosome 13 deletion.

Back for a second time was our friend Maureen Carling, RN. Maureen commanded our attention right from the start. She spoke on a subject that most of us deal with on a daily basis Ð pain management. Pain in malignant disease is common, yet in most patients pain can be effectively controlled. For effective pain management there are three basic things which must be done: assessment, titration, and regular and frequent monitoring. She informed us that there are neurological receptors for eight different types of pain, most myeloma patients are experiencing at least four kinds of pain at once, and yet the most commonly given type of medication, opioid therapies, affect only two types of receptors. Maureen ended with this: Pain CAN and SHOULD be controlled. You have nothing to fear but fear itself!
To close the afternoon, we took a deep breath, and listened and interacted with Greg Pacini, a licensed professional counselor. It is always a powerful thing when a group trusts its members enough to communicate somehow what is needed in the moment. Greg started out his agenda with an educational discussion on "Travel Tips for Couples on The Journey Beyond Diagnosis." That discussion led us to a cleansing of emotions; the perfect ending to a long but inspirational day.

After a fabulous dinner we were treated to the uplifting words of Tom Bay. Having amassed 20-plus years of interviews with individuals from all walks of life, Tom has distilled a list of 13 traits that winners all share. Tom feels that the IMF staff, patients, and caregivers are the personification of these traits. He tells us that we are the "Eagles" that soar above the problems that the "Ducks" quack about...! Here are Tom's 13 Qualities Winners All Share: Discipline, Self-Confidence, Progressive, Decisive, Focused, Visionary, Lucky, Excels, Enthusiastic, Purposeful, Empower, and Spiritual. Tom made us all feel like "Eagles" (a bit tired, but still Eagles)! The evening ended with my husband, Michael Tuohy, playing a song that he wrote for our children and donated to the IMF entitled "I'm Not Leavin'."

On Sunday we wrapped up the weekend with Dr. Durie and Mike Katz providing us with an overview of osteonecrosis of the jaws in myeloma. This is increasingly recognized as a complication of bisphosphonate therapy. Based upon the responses to their web-based survey it was concluded:

  • Duration of bisphosphonate use in myeloma and breast cancer is associated with increased risk of osteonecrosis (ONJ);
  • 36-month estimates of ONJ are higher for Zometa versus Aredia;
  • None of the other therapies analyzed were associated with increased risk of ONJ;
  • Patients with prior dental problems have a higher risk of ONJ.
    Please inform your dentist/oral surgeon if you are on bisphosphonates. For more information please go to the IMF website at www.myeloma.org.

David Smith, Vice President, Operations, ended the morning with updates on Bank on a Cure¨ and a prevention grant from the Centers for Disease Control. Bank On A Cure is the first international cooperative DNA bank for genetic analysis Ð to allow physicians to better understand patient treatment response and to find a cure. Bank On A Care now has thousands of samples "in the bank" and the IMF held a formal launch in NYC on May 9th with Geraldine Ferraro. If you are interested in participating in Bank On A Cure, please contact David at dsmith@myeloma.org or 800-452-CURE (2873). As for the Centers for Disease Control prevention grant, it is a three-year initiative to fund educational outreach that targets specific underserved populations who are at high risk for hematologic cancers. It is up to each of us to help spread the word! We can do so by reaching out to African-Americans, the elderly, the uninsured, and the under-insured. The IMF has made available on our website a video, brochures, and information. Again, please contact David if you are interested in this outreach program.

As the weekend came to a close, we were invigorated, inspired, and ready to go back to our groups and share our experiences. I wholeheartedly encourage each and every group leader, whether you are facilitating a new group or an established group, to attend next year's Retreat. I guarantee you will not only learn more about this disease but the friendships that you will form will be invaluable. Please keep an eye out for next year's invitation to the Retreat and sign up early to attend. Remember, Knowledge is Power!

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