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Myeloma Minute - July 30, 2007
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.


Centers for Medicare and Medicaid Services (CMS) post "national coverage determination (NCD)" for coverage of erythropoiesis stimulating agents (ESAs) for non-renal uses.
Emerging safety concerns (thrombosis, cardiovascular events, tumor progression, and reduced survival) derived from clinical trials in several cancer and non-cancer populations prompted CMS to review its coverage of erythropoiesis stimulating agents (ESAs).

The IMF went to Kos, and because you couldn't go with us, we brought the meeting back to you.
The IMF is pleased to offer comprehensive coverage of the XIth International Multiple Myeloma Workshop held last month in Kos, Greece. The webcast includes audio and slides from key sessions.

Obesity Found to be a Risk Factor for Multiple Myeloma
An obese person is more likely than a lean person to develop multiple myeloma, according to researchers from Brigham and Women’s Hospital, Harvard Medical School, and Harvard School of Public Health. Their findings indicate that Body Mass Index (BMI) – a statistical measure that scales weight to height – provides an indicator for one’s risk of developing multiple myeloma, a cancer of the blood cells that produce antibodies. (from Newswise)

Blue Shield of California curbs anti-anemia drug limits
Blue Shield of California, which has more than 3 million members in California, reversed parts of a recent policy change that limited when the insurer would pay for anemia drugs Aranesp, Epogen, Procrit following protests from doctors. (from Reuters)

featuring Christopher Guest, Michael McKean, and Harry Shearer (Spinal Tap and The Folksmen)
We're lucky. People should be envying us, you know. Because the IMF is hosting Concert for a Cause on August 27, 2007, and we are going to be having a good time...all the time. Stay tuned for updates.

Genzyme Announces Phase 3 Trial of Mozobil in non-Hodgkin's Lymphoma Meets Primary Endpoint
Based on these results Genzyme expects to file for US and European approval in lymphoma in the first half of 2008. In addition, Genzyme is completing a second phase 3 trial of Mozobil in multiple myeloma, and results are expected in the coming weeks. (from CNN Money

Wreck won't stop myeloma crusade
As Bobby Trufant stared into the billowing smoke and fire from the wreckage in front of him, he didn't hesitate to act. Trufant, 53, was driving east in an RV hauling a family as it toured the country raising awareness about multiple myeloma — a life-threatening bone marrow cancer — when the dust storm hit. (from the Arizona Daily Star)

For more information, read Robin's blog about the accident and the Myeloma Mobile's summer tour.

Sixth Annual MMAMM Benefit Brings Great Music to Sea Cliff
A writeup with pictures of the event will be in the next Minute, but this very good article in the local paper explains why Multiple Musicians Against Multiple Myeloma is at the top of the charts every year. (from the Glen Cove Record Pilot)

New publications in the IMF Library:

The Nurse Leadership Board of the International Myeloma Foundation Presents 'Guidelines For Enhanced Patient Care' at International Medical Meeting
The Nurse Leadership Board (NLB), of the IMF presented a poster entitled "Nurse Guidelines for Enhanced Patient Care," at the 11th International Myeloma Workshop, a meeting involving more than 1600 people in Greece. The guidelines represent specific protocols and procedures nurses can use to help myeloma patients optimize their treatments, manage side effects and receive the support they need. (from Earthtimes)

Study Tracks Progression from Smoldering to Active Multiple Myeloma
Researchers from the Mayo Clinic have reported that the risk of progression from smoldering to symptomatic myeloma is related to the proportion of bone marrow plasma cells and the serum monoclonal protein level at the time of diagnosis. (from CancerConsultants)

Nicholas Piramal wins FDA approval for P 276-00 in myeloma
Clinical trials will be conducted at Dana Farber Cancer Institute with St Vincent's Hospital, New York and Emory University Medical Center, Atlanta also participating in the study. (from Forbes.com)

Gene that protects against cancer also helps delay aging
The p53 gene already identified as one that protects against cancer also appears to aid in delaying the aging process, a new study says. The research confirms previous studies that showed the gene can cause premature aging, but the new work controlled the gene so it could be switched on when needed. (from Reuters)

A Deeper Look at Disease
Molecular imaging technology is showing promise as a technique for earlier disease diagnosis, more accurate prediction of the spread of disease and better understanding of the effects of drugs on the body. (from MIT Technology Review)

Low-Molecular-Weight Heparin Improves Survival Rate in Cancer Patients With or Without Venous Thromboembolism: Presented at ISTH
Use of low-molecular-weight heparin (LMWH) to treat patients with cancer appears to reduce their rate of mortality compared with best supportive care, according to a meta-analysis of clinical trials. Researchers reported the findings in a poster presentation at the 21st Congress of the International Society of Thrombosis and Haemostasis (ISTH). (from DocGuide)

Cancer Caregivers Needed for Research Study
The National Cancer Institute (NCI), a federal agency that is part of the National Institutes of Health (NIH) and the George Washington School of Public Health, would like to talk to women who are providing care for a family member or friend with cancer. They’d like to learn about your caregiving experience and how you have coped.

If you are female between the ages of 31 and 80, who is currently providing care for someone over the age of 20 with cancer, OR provided care for someone over the age of 20 with cancer at end-of- life within the last year, call them toll-free at: 1-888-249-0029
(Monday to Friday, 9am-5pm EDT).

They will ask you some questions about yourself and your caregiving experience. Participating in this study involves a total of 15-20 minutes by phone. If you qualify, you may be asked to provide additional information about your caregiving experiences in a follow-up telephone interview that will last approximately 45-60 minutes.

Researchers study fish toxin for targeting tough cancer cells
U.S. researchers say a fish poison used to kill off unwanted fish species may also target cancer cells that have withstood radiation and chemotherapy treatments. They say a chemically modified version of the fish toxin apparently homes in on cancer cells with very high levels of "survival proteins" and kills them. A drug incorporating the toxin could clear away the worst cancer cells and make other treatments more effective, scientists say. (from the Seattle Times

Close your eyes and imagine perfection. Open them and you are at the Grand Lido Negril Resort & Spa
Read the latest issue of the IMF Travel Advantage newsletter for this and other fabulous trips, including an Alaskan Glacier Discovery Tour. Great prices and you are helping the IMF with every vacation.

(IMF Scientific Advisors are marked with an *)
  • VELCADE® trials

  • THALOMID® trials

  • REVLIMID® trials

  • DOXIL® trials

  • A Phase I  protocol of the combination of bortezomib and tipifarnib for relapsed or refractory multiple myeloma.  The following sites will be enrolling eligible patients: City of Hope National Medical Center (Duarte, CA); Emory University (Atlanta, GA); University of Toronto (Toronto, ON, Canada).
  • A Phase II study to evaluate the efficacy and safety of LBH589B in adult patients with multiple myeloma who have received at least two prior therapies and are refreactory to their last therapy.  Patients must have received prior therapy with either bortezomib or lenalidomide. Sites include City of Hope National Medical Center; Indiana University (Indianapolis, IN).
  • Millennium Pharmaceuticals Inc. has begun a randomized, multicenter Phase III trial to determine the most effective Velcade-based combination therapy with approved agents for the treatment of newly diagnosed multiple myeloma patients, ineligible for stem cell transplantation. The trial, named UPFRONT, will compare three Velcade-based therapies: Velcade and dexamethasone; Velcade, thalidomide and dexamethasone; and Velcade, melphalan and prednisone. The primary endpoint of the trial is progression-free survival with secondary endpoints including duration of response, overall survival and overall safety/tolerability. Target enrollment for the trial is up to 500 patients, and participants will remain in the trial on treatment for up to one year.
If you would like more information about any clinical trial, you can call the IMF Hotline at 800-452-CURE. The Myeloma Matrix has a current list of all myeloma trials from pre-clinical to recently FDA approved. If you would like to browse trials currently open for enrollment, visit the Clinical Trials page of the IMF web site. Among the links, you will find EmergingMed, with whom the IMF has entered into a partnership to assist you in matching trials to your particular patient profile (i.e., stage of disease, previous treatment, how well you are able to carry out the activities of daily living, etc.) and by doing so, increase your chances of being eligible. You can also learn more about clinical trials by reviewing materials from the National Cancer Institute.

III Seminário para Pacientes & Familiares IMF - São Paulo, Brasil
05 de agosto
Paris Patient & Family Seminar - Paris, France
September 14, 2007
Greater Kansas City Symposium - Kansas City, Missouri
September 15, 2007
Patient, Family & Healthcare Professionals Seminar - London, Ontario, Canada
September 15, 2007
Naples Patient & Family Seminar - Naples, Italy
September 21, 2007
St. Petersburg Clinical Conference - St. Petersbrg, Russia
September 26, 2007
Beijing Clinical Conference - Beijing, China
October 20, 2007
Barcelona Patient & Family Seminar - Barcelona, Spain
October 22, 2007
Heidelberg Patient & Family Seminar - Heidelberg, Germany
October 26-27, 2007
Tampa/St. Petersburg Patient & Family Seminar - St. Petersburg, Florida
November 2-3, 2007
3rd Annual Southwest Symposium - Tempe, Arizona
November 10, 2007
Düsseldorf Regional Community Workshop - Düsseldorf, Germany
November 17, 2007
Berlin Regional Community Workshop - Berlin, Germany
November 19, 2007

The IMF's comprehensive "How-to-FUNdraise" guide is what you need if you're thinking about fundraising in your community but don't know where to start. The guide contains the A - Z of fundraising ideas--like running in a local marathon and asking for donations per mile for myeloma; having a holiday party, where you charge a cover and hold a raffle; asking your local supermarket to donate wine and cheese, then selling tickets and having a cocktail party--as well as tips and guidelines for success. Check out the FUNdraisers below and show your support by donating to their effort online:
Cents for Cells
Beth Morgan is helping the IMF by raising a penny for each stem cell that will be collected for her BMT. She has dedicated Cents for Cells to the memory of Chris Hollyer.
The Stratford Runner
Sheldon is running 1000 kilometers across Canada to raise money to support myeloma research.

Carlos' Ride for the Cure
Carlos is riding his bicycle to support the work of the IMF. "I say, 'until there is a cure I ride for the IMF.'"

Miles for Myeloma
Larry Bartolin is a six-year survivor of multiple myeloma, and is riding his motorcycle to raise funds and public awareness.

Billy and Devon's Wedding - North Miami Beach, Florida
July 28, 2007

Pikes Peak Hike - Pike's Peak, Manitou Springs, Colorado
September 21-22, 2007

Salon 926 Myeloma Awareness Month - Wilmington, Delaware
September 2007

Coach Rob’s Benefit Bash & Golf Tournament - Altamonte Springs and Apopka, Florida
September 30 and October 1, 2007
Eric’s Run for His Aunt Linda - Arlington, Virginia
October 28, 2007

As a non-profit organization, the IMF is completely dependent on the support of our members. Tax-deductible donations in honor of a friend or family member make great gifts and are a wonderful way to celebrate a special occasion. You can donate online or by calling the IMF at (800) 452-CURE. And you can order beautiful tribute cards to send out to your friends and family every time you make a donation in their honor to the IMF.We sincerely thank you for your support.
Difford Bracelets Multiple Myeloma Awareness Bracelets
Beautiful custom made jewelry to honor those who have joined the struggle against multiple myeloma.

Caregiver Daily Journal

New! Caregiver Daily Journal
If you are a caregiver, the IMF's own Sylvia Baca has written a journal to help you document the daily care you give your loved one. It's $25, with all profits going to support the programs of the IMF.

Sarah Klein's Bracelets

Sterling Bracelets by Sarah Klein
Sarah Klein's father, Benson, was diagnosed with myeloma in 1998, and has been in remission for 8 years.
Sarah wants to give back to the IMF in her own creative way and has designed two special bracelets made up of semi-precious healing stones. A portion of the proceeds from the sale of these bracelets is being donated to the IMF.

Imagine Moving Forward is the theme of the IMF's popular myeloma bracelet. At medical conferences and patient & family seminars we see people wearing them in honor, celebration, or in memory of a loved one. They're only $1 each in sets of 10, so order them for everyone you know who has been touched by myeloma. Order them on the web. If you have questions about the bracelets or would like more information, contact Suzanne Battaglia at (800) 452-2873, ext. 227, or SBattaglia@myeloma.org.
See more exciting ways to help the IMF continue its important work in education, support and research.

Help for Underinsured Myeloma Patients
Thanks to the advocacy of the IMF, the Chronic Disease Fund has received an infusion of money to help them meet the needs of underinsured patients with multiple myeloma. The fund is designed to help patients with their insurance co-payments and/or their Medicare Part D 'doughnut holes.' Patients must qualify based on financial need. To speak with a representative of the Chronic Disease Fund, please call 877-968-7233, or contact them through their web site at cdfund.org.

Mensajero del Mieloma
La IMF quiere enviar información sobre el mieloma en español a todos los pacientes, familiares e interesados. Para suscribirse al correo electrónico (enviaremos diez números al año), por favor, envíe su dirección a mensajero@myeloma.org. ¡Gracias!


International Staging System

A tool to help understand the current status of the disease and the questions you should be asking.

HealthTalk's Multiple Myeloma Education Network

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