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September 14, 2003 Myeloma Minute
What's News
  • 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.
  • New Treatment Options Featured in NCCN Multiple Myeloma Clinical Practice Guidelines
    The National Comprehensive Cancer Network, an alliance of nineteen of the world's leading cancer centers, announced an update of their Multiple Myeloma Clinical Practice Guidelines, adding bortezomib (VelcadeTM) to its listing of chemotherapeutic agents that are considered appropriate for patients with progressive or refractory myeloma. (from BusinessWire)
    Read the NCCN Practice Guidelines (Adobe Acrobat PDF document).

  • Mixed Data Leave Doubts on Cancer Drug
    Results of melanoma trial using Genasense, while providing some glimmer of effectiveness, fall short of expectations. (from New York Times)
    Althought the NYTimes read the results one way, Genta Inc. and Aventis SA said tests showed their drug Genasense helped skin cancer patients live longer and filed for U.S. regulatory approval. Read related Aventis Files for FDA OK of Cancer Drug (from Reuters)
    (Editor's Note: Researchers reported at the ASH 2002 meeting that Early Clinical Results Suggest Genasense(TM) May Be Useful for Patients With Highly Resistant MM.)

  • Fish Oil Helps Cancer Patients
    Fish oil may help prevent cachexia, the severe wasting and weight loss experienced by people with some types of advanced cancer, says a British study in the current issue of Gut. (from Yahoo Health)

  • The Lance Armstrong Foundation (LAF) Builds Awareness for Cancer Survivorship in Public Health
    The LAF, continuing its support for the development of offices of survivorship in public health organizations, will help address the need for national cancer survivorship initiatives at the 2003 Centers for Disease Control and Prevention (CDC) Cancer Conference, Comprehensive Approaches to Cancer Control: The Public Health Role, Sept. 15-18 in Atlanta, Georgia. (from BusinessWire)

  • The Cancer Promise
    Speaking of Lance Armstrong: As IMF Advocate Greg Brozeit reports in the Advocacy Update (see below), the Senate defeated an amendment to increase medical research funds. You can show your support for cancer research by signing the Cancer Promise. (No donations are solicited for the Promise, and they are not collecting addresses/phone numbers.) Lance Armstrong will deliver your Cancer Promise with thousands of others to Washington, DC after his week-long Tour of Hope journey across America.

    When you sign up, it gives you the option of saying that you are signing in honor of someone. Let's sign the Promise in honor of the late June Brazil, who helped start the myeloma listserv. You'll find the Promise at http://www.tourofhope.org/promise/index.php.

  • The Role of High-Dose Chemotherapy and Stem-Cell Transplantation in Patients with Multiple Myeloma: A Practice Guideline of the Cancer Care Ontario Practice Guidelines Initiative
    An evidence-based practice guideline assessing the role of stem-cell transplantation in patients with multiple myeloma, validated by solicited feedback from 221 practitioners across Ontario, Canada. (In Adobe Acrobat PDF format)

  • Thalidomide returns to respectability
    The body that regulates medicines in Australia is expected to give its approval soon for thalidomide to be prescribed for the treatment of leprosy and multiple myeloma.(from News in Science - ABC Australia)

  • Cheap Canadian drugs may be fakes
    The tactic of buying prescription drugs from Canada has escalated in popularity because prices are much lower. However, certain prescription drugs require special dispensing restrictions to ensure patient safety, and Thalomid is one of them. (from the Fort Wayne News Sentinel)

  • It has been correctly pointed out to the Minute that last week's mention of the VA's position on disability benefits for veterans exposed to herbicides was perhaps too technical. So, with the assistance of IMFer Tom Courbat, we offer this: Multiple myeloma patients who served in the Viet Nam conflict or were stationed in Korea in 1968-69 MAY be eligible due to exposure to Agent Orange for full disability benefits from the VA. In most cases, you don't have to know or prove you were exposed to Agent Orange (AO), the VA "presumes" it for you! These benefits COULD include such benefits as up to $2,500 or more per month in TAX FREE compensation, free medical, dental and vision care, education benefits for dependents, medical benefits for dependents, commissary (BX/PX) privileges, possible exemption from vehicle and property taxes, headstone and burial coverage, and a host of other benefits. A more in-depth discussion of this topic will appear in the next issue of Myeloma Today.

What's New in Myeloma Research:
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 materials from the National Cancer Institute.

Advocacy Update:
  • Senate Fails to Pass Amendment to Increase Research Funds
    IMF Advocate Greg Brozeit reports that despite a passionate appeal by Sen. Tom Harkin, the U.S. Senate failed to pass the Specter-Harkin-Feinstein Amendment to add $1.5 billion to the National Institutes of Health budget for 2004, a stunning defeat for the medical research community.

  • Congressional Conferees Agree to Include OPPS Remedies in Final Medicare Legislation
    House and Senate conferees charged with reconciling differences between the two Medicare prescription drug coverage bills passed in June have agreed to several provisions designed to restore Medicare reimbursement to drugs and biologics provided in the hospital outpatient setting. (from US Newswire)

  • Sen. Hatch asks companies to work on asbestos bill
    With the outlook rough for an asbestos reform bill in Congress, the main sponsor said on Tuesday he had asked insurers and asbestos companies to try to reach a deal that could help rescue the measure. (from Reuters)

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. This 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 in 2004. 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!

  • Fiesta for a Cure!
    November 16, 2003
    Join us for authentic Mexican food, music, margaritas, a chance to make a significant contribution to Bank on a Cure® and the opportunity to win great prizes, including a grand prize of $10,000.

Exciting Opportunities
Items of Interest:
    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.
  • MMInteractive
    An exciting way for myeloma patients to get involved at patient seminars.
  • 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
    Put this site in your favorities folder.

Shop for 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 Cure page. You can also use the special shortcut URLs listed below:

So, Shop For 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.

Tell A Friend...
The Myeloma Minute is a great way to stay abreast of the latest developments within the myeloma community. We hope you'll share this information with friends, family members and physicians and encourage them to sign up for their own copy by forwarding this message. New users can register by clicking here.
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