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Myeloma Minute
September 19, 2008
09.19.08
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.


WHAT'S NEWS

Register Today for the Upcoming Webinar on the Myeloma Manager
We invite you to attend a Webinar that will introduce the Myeloma Manager™ Personal Care Assistant™, the exciting new software tool distributed without charge by the IMF. This tool can help manage laboratory results, tracking and graphing trends over time. It also helps organize other information relevant to myeloma patient care. To participate in the Webinar, you need to have an internet connection and a web browser. The Webinar is intended for current and potential users of the Myeloma Manager™.  If you would like to attend, please register by following this link.


THE VISTA TRIAL RESULTS BRING VELCADE NEWS

  • VELCADE For Multiple Myeloma Receives Front-line Approval In Canada
    With this new approval, patients with multiple myeloma can now receive VELCADE earlier following initial disease diagnosis, which may help to slow, reverse or halt disease progression. (from Medical News Today)

  • EU approves VELCADE for all stages of multiple myeloma
    The European Commission has approved VELCADE® in combination with melphalan and prednisone for the first-line treatment of patients with multiple myeloma who are not eligible for high-dose chemotherapy with bone marrow transplant. In 2005, VELCADE was approved in the European Union for multiple myeloma after first relapse. (from CancerFacts.com)

  • Combination Therapy Helps to Combat Myeloma
    Adding Velcade to standard drug therapy prolonged survival, VISTA study finds. Patients with multiple myeloma who could not tolerate high dose chemotherapy lived longer and better by adding the drug Velcade to standard treatment. (from US News and World Report)

  • An Editorial by IMF Chairman Dr. Brian Durie Featured in the New England Journal of Medicine
    Dr. Durie says that the statistics from the VISTA trial leave no doubt that combination therapy with bortezomib is superior to MP alone. However, he raises the issue, "how does this clear-cut evidence inform treatment decisions?"


Boyle Event The IMF's 2nd Annual Comedy Celebration Benefiting the Peter Boyle Memorial Fund
November 15, 2008
You won't want to miss this night of a thousand laughs hosted by Ray Romano, and featuring Jeff Garlin, Patricia Heaton, Kevin James, Robert Klein, Doris Roberts, Fred Willard, and Dan Aykroyd and Jim Belushi as The Blues Brothers with the Sacred Hearts.


Dental Care Prevents Adverse Events in Patients Taking Bisphosphonates
Implementation of a single proactive preventive dental program before and during treatment with bisphosphonates can lead to a significant reduction in the incidence of osteonecrosis of the jaw (ONJ), according to the results of a study presented here at the American Society for Bone and Mineral Research (ASBMR) 30th Annual Meeting.(from DocGuide)

Treatment advances in myeloma now benefiting other blood cancers
Writing in the October 10th edition of the Journal of Clinical Oncology, IMF chairman Brian G.M. Durie, M.D., notes that 25 years ago only 48 percent to 66 percent of myeloma patients survived two years, depending on which treatment was used. By contrast today, two-year survival rates are around 90 percent. Dr. Durie notes these achievements with myeloma are now benefiting a wide range of blood cancers as myeloma drugs are being tested in non-Hodgkin's lymphoma, chronic lymphocytic leukemia and other blood cancers. (from Huliq News)

IMF Board Member Michael Katz to speak at Multiple Myeloma and Amyloidosis Patient Day Educational Conference
He joins experts from Karmanos Cancer Institute and Mayo Clinic for this free conference on September 27, 2008 in Auburn Hills, Michigan.

Local cancer study gains national attention
Lorraine Colabella — diagnosed with multiple myeloma five years ago — began her crusade after becoming concerned over the cancer rate in the local area. The National Disease Cluster Alliance, an organization that works with towns that appear to be affected by excessive disease cases, has joined her cause and will help guide her in the right direction, by gaining attention and educating the people involved. (from The Lyndhurst Leader)

Webcast of the Boston 2008 Patient & Family Seminar
Whether you are newly-diagnosed or well-versed in myeloma treatments, an IMF Patient & Family Seminar has something for you. If you are deciding whether to attend an IMF seminar, why not sit in on the Boston seminar held in July. The IMF cameras were there to capture it.


FDA hires 1,300 new doctors and scientists
The staffing drive, launched just five months ago, will result in an estimated 10 percent increase in the FDA's work force. Holden said the new hires will provide critical expertise after years of losing valuable medical and scientific people who took industry jobs or went into retirement. The exodus came as the agency struggled to cope with a string of drug and food safety problems that damaged its reputation. (from the Miami Herald)

Lidocaine Patch Soothes Neuropathic Pain as Effectively as Pregabalin, But Has Better Tolerability
Topical treatment with a 5% lidocaine medicated patch is as effective as systemic therapy with pregabalin in the treatment of postherpetic neuropathic pain, according to the results of the first phase 3 study to directly compare these 2 treatments. (from DocGuide)


Japan's Health, Labor and Welfare Ministry begins review of thalidomide approval
In light of the pending approval of thalidomide to treat myeloma the Ministry began a review session to implement measures to prevent a recurrence of a serious fetal disorder associated with the drug's use. Some of the 13,000 to 14,000 multiple myeloma sufferers in Japan have taken thalidomide after their doctors imported it privately. (from Daily Yomiuri Online)

Many Cancer Patients Receive Insufficient Pain Management Therapy
Researchers sought to determine the main reasons that patients fail to receive optimal pain therapy. Between November 2005 and April 2006, 106 radiation therapy patients responded to an Internet-based questionnaire that evaluated their medication use, pain control and attitudes toward pain medication, including prescription and over-the-counter pain medications. Most patients said the main reason they did not take pain medication was because their healthcare provider did not recommend it. This reason was followed by a fear of addiction or dependence and the inability to pay. Some patients also reported using alternative therapies for pain relief, including physical therapy, massage and acupuncture. (from Medical News Today)

Researchers view genetic information from multiple databases with specially designed Web portal.
The Dana-Farber Cancer Institute in Boston is harnessing the dual power of business intelligence and Web 2.0-based scientific search tools to gather complex, scattered data to better treat patients and work toward a cure for this formidable disease. (from ComputerWorld)


How to Host an Afternoon Tea

Here’s an elegant and easy way to build awareness about myeloma and raise money in your community, and the IMF will help.


Tackle Myeloma Foundation Fundraiser a Huge Success
Founded by IMFer Elijah Alexander, the Tackle Myeloma Foundation held its third annual Celebrity Golf Tournament and Auction!

AmEx
New opportunity for American Express Cardholders to support IMF
Are you an American Express ® Cardmember? Do you collect Membership Rewards points? If so, you will be interested to learn that you can redeem your Membership Rewards points to help the IMF.


WHAT'S NEW IN RESEARCH
ARTICLES
(IMF Scientific Advisors are marked with an *)

  • Bortezomib plus Melphalan and Prednisone for Initial Treatment of Multiple Myeloma
    Jesús F. San Miguel, M.D., Ph.D.*, Rudolf Schlag, M.D., Nuriet K. Khuageva, M.D., Ph.D., Meletios A. Dimopoulos, M.D.*, Ofer Shpilberg, M.D., Ph.D., Martin Kropff, M.D., Ivan Spicka, M.D., Ph.D., Maria T. Petrucci, M.D., Antonio Palumbo, M.D.*, Olga S. Samoilova, M.D., Ph.D., Anna Dmoszynska, M.D., Ph.D., Kudrat M. Abdulkadyrov, M.D., Ph.D., Rik Schots, M.D., Ph.D., Bin Jiang, M.D., Maria-Victoria Mateos, M.D., Ph.D., Kenneth C. Anderson, M.D.*, Dixie L. Esseltine, M.D., Kevin Liu, Ph.D., Andrew Cakana, M.D., Helgi van de Velde, M.D., Ph.D., Paul G. Richardson, M.D.*, for the VISTA Trial Investigators
    New England Journal of Medicine; Volume 359:906-917 August 28, 2008 Number 9
  • Genes mirror geography within Europe
    John Novembre, Toby Johnson, Katarzyna Bryc, Zoltán Kutalik, Adam R. Boyko, Adam Auton, Amit Indap, Karen S. King, Sven Bergmann, Matthew R. Nelson, Matthew Stephens & Carlos D. Bustamante
    Nature , | doi:10.1038/nature07331;

CLINICAL TRIALS

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 (NCI). To see the summaries of newsworthy clinical trial results, visit the National Cancer Institute Multiple Myeloma Trial Results.


UPCOMING SEMINARS AND CLINICAL CONFERENCES
Note: Some of the international seminar cities have been set, but the venues and agendas are still in the works. Check back often if you are interested in attending, as we post the sites and speakers as they are confirmed.

5th International Symposium on Clinical Applications of Serum Free Light Chain Analysis - Bath, United Kingdom
September 18-19, 2008
BMT InfoNet's "Celebrating a Second Chance at Life" - Dallas, Texas
September 20-21, 2008
Minneapolis/Twin Cities Regional Community Workshop - St. Louis Park, Minnesota
September 27, 2008
The Multiple Myeloma Conference - Pewaukee, Wisconsin
October 4, 2008
2nd Annual St. Louis Regional Community Workshop - St. Louis, Missouri
October 8, 2008
Paris Patient & Family Seminar - Paris, France
October 10, 2008
2nd Annual Greater Kansas City Area Regional Community Workshop - Kansas City, Missouri
October 11, 2008
Rome Patient & Family Seminar - Rome, Italy
October 17, 2008
East Texas Regional Community Workshop - Longview, Texas
October 18, 2008
4th Annual Southwest Symposium - Tempe, Arizona
November 22, 2008
San Francisco Patient & Family Seminar - San Francisco, California
April 17-18, 2009

UPCOMING EVENTS
SpringWe are all in this together...
From a day of beauty to a walk in the clouds, from yard sales to concerts, IMFers are creating fun days to raise money to help support the important work that the IMF is doing in both research and education. Check out the FUNdraisers below and show your support by donating to their effort online:
Traveling the World in Search of a Cure - Jenkintown, Pennsylvania
September 26, 2008
Susan Young's Yard Sale in honor of Douglas Farrell - Ridge, New York
September 27, 2008
5th Annual Peggyann Pytlik Walk of HOPE for a CURE of MYELOMA in Honor of Joe "Duffer" Dutton - Niagara Falls, New York
September 28, 2008
10th Annual Evening 4 A Cure - Lancaster, New York
November 1, 2008
The IMF's 2nd Annual Comedy Celebration Benefiting the Peter Boyle Memorial Fund - Los Angeles, CA
November 15, 2008
ONGOING EVENTS
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.
Commissions for Chris: A Campaign to Honor Chris Hollyer
Jo Marie Gray is donating her new-client commissions from the sale of Arbonne Cosmetics to the Chris Hollyer Research Fund at the IMF.
Clyde's Ride for the Cure
Clyde is riding his bicycle to support the work of the IMF. "I say, 'until there is a cure I ride for the IMF.'"
Debbie Exner's Walk for Myeloma
Debbie walked the PF Chang Half Marathon in Phoenix on January 13, 2008 to raise money for the IMF in honor of her mother. You can still donate to her cause.
Losing Weight to Gain Awareness
Debi is losing weight to raise money for research and the awareness programs of the IMF.

HELP THE IMF
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.
Shop for the IMF
Shop with the leading merchants on the Internet, receive the same price as anyone else visiting their sites, and support the IMF at the same time!
Five Nights In Tahiti! Can't go wrong in a sarong!
No matter where you want to go, IMF Travel Advantage has a package for you.

Read the latest issue of the IMF Travel Advantage newsletter for this and other fabulous trips. Great prices and you are helping the IMF with every vacation.
Caregiver Daily Journal

Caregiver Daily Journal
If you know a caregiver, the IMF's own Sylvia Baca has written a journal to help document the daily care they give their 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.

Multiple Colors for Multiple Myeloma Keychains and Earrings
Bring rainbows of happiness, color and light into your loved ones' lives with an IMF keychain or Swarovski crystal earrings.

Arbonne Cosmetics
Jo Marie Gray is donating her new-client commissions from the sale of Arbonne Cosmetics to the Chris Hollyer Research Fund at the IMF.
IMF Logo Items
Let the world know that you support the groundbreaking research and innovative patient support programs of the IMF with a hat or shirt or bracelets!
See more exciting ways to help the IMF continue its important work in education, support and research.

ITEMS OF INTEREST


Have you downloaded your Myeloma Manager™ Personal Care Assistant™

Another exciting first from the IMF!
Free software to help manage and understand your lab results, and more!


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 electró nico (enviaremos cuatro ejemplares al año), por favor, env íe su dirección a mensajero@myeloma.org. ¡Gracias!


BANK ON A CURE®

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

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