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January 29, 2004 Myeloma Minute
01.29.04
What's News
  • Millennium's Velcade Drug wins EU backing
    The EU's Committee for Proprietary Medicinal Products recommended approving Velcade for patients with myeloma who are no longer helped by older treatments (from the Boston Business Journal)

  • Fighting Cancer...Inside
    A team from the University of Nottingham hopes to find a way of treating myeloma, a cancer of the blood using a protein produced by cancer cells which stimulates an immune response from the body. (from the Nottingham Evening Post)

  • Volume II of Cooking for a Cure is in the Works!
    The collection of recipes for Volume II of our very popular healthy food cookbook is being led by Marilyn Alexander, a myeloma survivor from Philadelphia. Please help us with this important project by submitting your favorite recipes.

  • One day, pill might prevent cancer's growth
    "Prevention is the most exciting area now," says Dr. Judah Folkman, a cancer researcher at Children's Hospital in Boston. He is referring to research in angiogenesis inhibitors, three of which were approved for treating cancer: Iressa (for lung cancer), Velcade and thalidomide. (from the Palm Beach Post)

  • Study Devalues a Popular Idea on Evaluating Medical Trials
    A new report by researchers at the Dana-Farber Cancer Institute in Boston has found little evidence to support a widely held belief about clinical trials of experimental cancer treatments: that patients who enroll in them fare better than those who do not.


  • Quality of Cancer Care and Medicare Reform
    The IMF is interested in determining how the recently enacted Medicare reform legislation is impacting the quality of cancer care services.

    Provisions of the law affecting drug reimbursements for oncology drugs went into effect on January 1, 2004 The IMF is gathering information about the impact these rules have on access to quality care for cancer patients in order to apprise Congress of the consequences.  We will use this information to support any possible modifications to the law in order to ensure quality of care for all cancer patients.

    Some of the adverse things that may happen include:
    • Oncology groups closing some satellite community offices.
    • Reductions in the numbers of support staff available at some physician offices
    • Patients being referred to hospital outpatient settings for certain types of drug therapy previously given in-office.
    • Patients being switched from (or off) some drugs that are no longer commercially profitable for physicians.

Please contact Greg Brozeit (greg.brozeit@sbcglobal.net), advocacy consultant to the IMF if you are aware of these or other issues as a result of the new Medicare rules.


What's New in Clinical Trials:
(Drugs listed In alphabetical order.)

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 materials from the National Cancer Institute.


Advocacy Update:

Quality of Life Update:


Upcoming Seminars and Conferences:


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. Last year, our members really rallied 'round the cause, picked up the gauntlet, and raised a lot of money for myeloma research and programs.

We are already getting calls from new members who want to join in the effort and hold an event this year. Suzanne Battaglia is waiting for your call. She is here to help you plan and execute your event, so please write, call or email (SBattaglia@myeloma.org) so that you can get on our Calendar of Events!

See what you can do in your community to help further the goal of finding the cure!


Exciting Opportunities

Items of Interest:
  • The National Cancer Institute (NCI) Office of Education and Special Initiatives is looking for patients, family caregivers, and physicians who are interested in participating in telephone focus groups and in-depth interviews. Payment will be provided to all participants.
  • BANK ON A CURE®
    BANK ON A CURE is an innovative and powerful concept designed to establish a method to find new treatments for multiple myeloma and other related diseases as well as the possibility of new cures, while customizing care for current patients.

  • 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.

  • International Prognostic Index
    The International Myeloma Foundation is proud to sponsor the International Prognostic Index (IPI) Classification for Multiple Myeloma. Nearly twenty myeloma institutions from around the world are collaborating to create an updated staging system for multiple myeloma.

  • 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.

  • 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.

  • HealthTalk's Multiple Myeloma Education Network
    The latest interview is Dr. Durie interviewing Dr. David Siegel about
    what's new in research for relapsing and refractory multiple myeloma. .

Be Part of the Cure!


  • Many of the internet's most popular merchants will donate a portion of your purchases to the IMF if you enter their sites using the links on our Shop For The IMF page. You can also use the special shortcut URLs listed below:



    So, Be Part of the Cure by using these links to the same get great service and low prices you're used to while helping support the IMF!


    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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