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January 29, 2003 Myeloma Minute

What's in the News

  • 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.
  • Agent Orange can cause leukemia, U.S. experts say
    A second look at the evidence supports the idea that people exposed to the chemical may have a higher risk of chronic lymphocytic leukemia and suggests an association with other diseases in veterans — including multiple myeloma (a Reuters story in the Environmental News Network)
  • New Discovery to help Switch Off Diseases
    A group of Australian scientists has been able to draw a three dimensional map of a protein believed to implicated in the development of multiple myeloma. (from the South African Broadcasting Corporation)

What's New in Myeloma Research:

  • Solitary Plasmacytoma of Tibia in a 29-Year-Old Woman
    Kadri YAMAÇ, Turgay FEN, Alper SANCAK, Öznur KONUÞ
    Solitary plasmacytoma represents a tumor consisting of monoclonal plasma cells identical to those seen in multiple myeloma... (from Turkish Journal of Haematology by way of DocGuide)
  • Plasmacytoma in the Bilateral Breast
    Mehmet DAÐLI, Taner DEMÝRER, Meltem AYLI, Rauf HAZNEDAR, Nazan GÜNEL, Gülsan SUCAK, Turgay FEN, Meltem MORAN, Tülay ÜSTÜN, Celalettin AYBÝRDÝ, Mustafa ÇAVUÞOÐLU, Süleyman DÝNÇER, Akýn UYSAL
    A 34-year-old woman presented with back pain and fatigue and was found to have lytic bone lesions and a serum monoclonal paraprotein of 4000 mg/dL... (from Turkish Journal of Haematology by way of DocGuide)

Quality of Life Update:
  • From Killer to Chronic Disease: Drugs Redefine Cancer for Many
    Today, an estimated 9 million Americans are cancer survivors, up from an estimated 6 million in 1990. Perhaps 1 million of them fall into this category -- living with cancer as a chronic disease, much like asthma, diabetes and, more recently, AIDS. (from the Washington Post)

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.

Items of Interest:
  • The National Cancer Institute, part of the National Institutes of Health, is currently developing educational materials for cancer patients & their families. As part of this effort, they are conducting a series of focus groups with the adult partners of cancer survivors. Participants will take part in one 90-minute telephone focus group and will be paid for their time.

    To make sure they are reaching all people affected by cancer, they are still looking for the following types of individuals:

      • African American, Latino, Asian American, Pacific Islander or Native American men - age 21-55
      • African American, Latina, Asian American, Pacific Islander or Native American women - over age 55
      • All races & ethnicities, men - over age 55

    If the following statements apply to you, they are interested in speaking with you further:

    • Your spouse or partner is a cancer survivor.
    • You have not personally received cancer treatment in the last six months.
    • You are not a physician, nurse or other health professional.

    Your opinion is important to them – and they would value your input. If you are interested in participating in this project, please call Larry Glade at Blarry House Research (866-409-7953 toll free) or e-mail him larryg@blarry.com by January 30, 2003.

  • 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....

Important Dates to Remember:
  • Update 2003: Cancer Research and Treatment
    A free public education program featuring cancer experts from Memorial Sloan-Kettering Cancer Center, Columbia Presbyterian Medical Center, the Cancer Institute of New Jersey, Aventis Pharmaceuticals, and the National Cancer Institute. Saturday, February 8, 2003, 9:00 AM-3:00 PM. Admission to the program, including luncheon, is free with advanced registration and tickets required. Register early, as seating is limited.
  • "Hair Cares"
    June 15, 2003
    Curries Hair, Skin & Nail Salon, Glen Mills, PA
  • 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.

What's New in Clinical Trials:

We have changed the format of this section to better reflect the mission of the Myeloma Minute, namely to bring you the latest information on pertinent topics. So look to What's New in Clinical Trials in the Minute to bring you news about the opening and closing of trials.

  • Phase III trial now closed for data evaluation.
    Drug: rHu-KGF (recombinant human keratinocyte growth factor)
    Indication: prevention of mucositis in patients undergoing high-dose therapy with stem cell rescue for hematologic malignancies.
    Read the Amgen Press Release (in PDF format)

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.

Exciting Opportunities:

  • A Valentine's Gift for Your Sweetheart and the IMF
    If you are looking for the perfect gift for your very significant other and you live in Southern California, IMFers Esther and Herman Adler, of Adler & Company Jewelers in Los Angeles, will make you a really sweet deal: 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. Call them at 213-624-1945 to make an appointment.
  • Multiple Myeloma Quilt of Courage

    The second quilt is now being pieced together, and we hope to have it up on the web by the end of January. The third quilt is reserved and so we are taking orders for the 4th and final quilt.

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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