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March 12, 2003 Myeloma Minute
03.12.03
What's News
  • OVAC Registration Opens
    The IMF supports the OVAC funding agenda because it is the best hope for increased federal funding to benefit all cancer patients, especially those with an interest in myeloma and other under-funded orphan cancers. See related article by Greg Brozeit "Congress Supports OVAC Agenda."
  • Help Us Help You By Completing The IMF Thalidomide Insurance Survey
    The IMF has been discussing thalidomide insurance reimbursement issues and potential solutions with the FDA and Celgene. To take the next step, we need to gather data from patients who have taken thalidomide and/or who were recommended thalidomide but subsequently did not take the drug. Help us help you by completing this short web-based survey at survey.myeloma.org. All individual responses will be kept strictly confidential.

What's New in Myeloma Research:
Advocacy Update:
What's New in Clinical Trials:

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 CenterWatch and EmergingMed. The IMF has entered into partnerships with them 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 material from the National Cancer Institute.


Quality of Life Update:
  • Some Clinical Trials Basics:

    • An Introduction to Clinical Trials
      An extensive list of FAQs about clinical trials from the National Institutes of Health

    • The ABCs of Clinical Trials
      "Of the 1.2 million people who will be diagnosed with cancer this year, only three to five percent will participate in cancer clinical trials. This is a dismal comparison to the rate of 60 percent of American children who participate and about a third of adult cancer patients in Europe who are treated via clinical trials." (from The Coalition of National Cancer Cooperative Groups)

    • Background Information on Clinical Research
      Includes questions to ask and a glossary of terms (from Centerwatch)

    • Common Misconceptions about Clinical Trials (from The Coalition of National Cancer Cooperative Groups)

    • Clinical Trials Survey
      Oncolink is conducting a study to determine the views of patients regarding enrollment in clinical trials in the hope of identifying barriers to clinical trial enrollment. Participation in this study is voluntary and anonymous.
  • ASCO Call for Patient Artwork
    The theme of ASCO's meeting this year is Commitment Care Compassion: Honoring People with Cancer. They are enlisting the help of patients, their families, and friends to contribute original artwork that visually conveys this theme.

If you are interested in joining a support group, use the IMF's worldwide support group directory to find one that meets near you. You can also join our online support group.

If you have a topic of particular interest that you would like us to feature, if you are starting a support group, or if you are in a support group that is doing something to make a real difference in the lives of mutiple myeloma patients and their families and friends, let us know.


Upcoming Seminars and Conferences:
  • IXth Annual International Workshop On Multiple Myeloma
    May 23-27, 2003
    Salamanca, Spain
    Every two years, the myeloma scientific community gathers from around the world to discuss the state of the art in myeloma treatment and research. This year they are meeting in the ancient and beautiful city of Salamanca.

Upcoming Fundraisers:

FUNdraising Made Easy
You know you want to do something, but deciding on what to do can be confusing. The IMF can help.

March Madness Basketball Fundraiser
March 21, 2003
Sharon, MA
Fashions 4 a Cure
April 6, 2003
Fox Valley Country Club, Lancaster, NY

Valued at $1,200.00, this cabochon sapphire and diamond ring, donated by Adler Jewelry and The Circle of Friends, will be raffled off at Fashions 4 a Cure

4th Annual JC Invitation Golf Tournament
May 17, 2003
Wapicada Golf Course, Sauk Rapids, MN

"Hair Cares"
June 22, 2003
Curries Hair, Skin & Nail Salon, Glen Mills, PA

5th Annual Corporate Challenge
June 30, 2003
Stamford, CT
Corporate Cup Challenge
August 26, 2003
Naperville, IL
Mile High March for Myeloma
August 16, 2003
Lake Arrowhead, CA

Exciting Opportunities:



  • Multiple Myeloma Quilt of Courage
    The second quilt is up and it's beautiful. Squares for the 3rd quilt are past due, so those of you who are working on them, please get them in. There are still a few squares left for the 4th and final quilt. If you would like one, email Suzanne Battaglia (sbattaglia@myeloma.org).
  • Make it Valentine's Day every day courtesy of IMFers Esther and Herman Adler, of Adler & Company Jewelers in Los Angeles. Buy beautiful jewelry at wholesale prices and—if you tell them you are an IMFer—a portion of the proceeds will be donated to the IMF. They make it so easy, too. They can work from digital pictures if you cannot meet with them, and they have a return policy if you are not completely satisfied. Call them at 213-624-1945 for more information.

Items of Interest:
  • HealthTalk Webcast of "Dexamethasone-Thalidomide Trial for Multiple Myeloma"
    What do the latest studies show using the combination "Thal-Dex" therapy? And are there some patients where Thalidomide shows promise used alone and sooner after diagnosis? Here the perspective of a leading expert, Dr. Vincent Rajkumar from the Mayo Clinic, in an in-depth interview recorded by HealthTalk at the American Society of Hematology meeting in December.
  • Myeloma Matrix
    The Myeloma Matrix provides updated information about drugs beginning with pre-clinical developments and tracks drugs as they proceed through Phases I – III of clinical trials, drugs that have been FDA approved, and information on trials that are being conducted by NCI- sponsored cooperative groups as well as other myeloma study groups. The online version is updated regularly. If you would like to have a printed copy, call the toll-free hotline (800) 452-2873.
  • NexCura Cancer Profiler
    The Cancer Profiler is a free service (no hidden fees or charges). Its tools provide you with information specific to your cancer diagnosis to help you make more informed treatment decisions along with your physician.
  • Expert Opinions on Multiple Myeloma
    A multimedia, CME-accredited program for physicians with the chance to see world-renowned myeloma specialists sharing their knowledge, discussing treatment choices, and comparing their perspectives on controversial issues in multiple myeloma and related diseases.
  • MMInteractive
    An exciting new way for myeloma patients to get involved at patient seminars.
  • Bank On A Cure
    The IMF is pleased to announce the launch of Bank On A Cure™, a groundbreaking international collaborative effort to establish a method to find new treatments while customizing care for current patients.
  • Myeloma At The Movies
    It has been our goal to bring our Patient & Family Seminars to people around the country who might not be able to attend an actual meeting, so we have set up a video lending library....

Help Us Help Others...
As a non-profit organization, the IMF is completely dependent on the support of our members. Please consider showing your support by making a tax-deductible donation today. 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. We sincerely thank you for your support.


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