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March 26, 2003 Myeloma Minute
What's News
  • New shot at cancer
    Experimental vaccines aimed only at malignant cells show promise. (from the LA Times)

  • Evidence Curry Ingredient May Fight Cancer
    Adding curcumin, an ingredient in the curry spice turmeric, to human cells with myeloma, Dr. Bharat B. Aggarwal of the University of Texas MD Anderson Cancer Center in Houston and his colleagues found, stopped the cells from replicating. And the cells that were left died. (from Reuters Health)
  • 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.

New! Question of the Week

We are happy to announce a new feature of the Myeloma Minute, the Question of the Week. In each issue we will feature an important question that has been recently addressed to the IMF Hotline. Our answers are not intended as medical advice, but as information to discuss with your doctor. If you have further questions or comments about any of the issues raised this week or in continuing weeks, please write us care of the Myeloma Minute.

Q. I have just been diagnosed with what my doctor called "non-secretory" myeloma. He says that the only way to monitor how well my treatment is working is to do repeat bone marrow biopsies. This sounds awful to me. Do you know if there is any other way to monitor my myeloma?

A. About 1-3% of myeloma patients do not make enough abnormal (monoclonal) protein to be monitored by standard blood and/or urine tests. This group of patients is difficult to diagnose and to monitor during treatment. Within the past year, an important new test—the Freelite test—has come on the market. It is extremely helpful for diagnosing and monitoring these patients. It also useful for monitoring patients with amyloidosis.

Approximately 70% of the patients formerly thought to have non-secretory myeloma test positive for the presence of free light chains (i.e. Bence-Jones protein) in the blood with this test. What this means is that the majority of patients with non-secretory myeloma have low-level Bence-Jones myeloma that has gone undetected with previous tests. The very sensitive Freelite test enables doctors to diagnose these patients and to monitor them with greater accuracy during treatment, remission, and relapse.

The Freelite test should not be confused with an older test called "Serum Light Chain Analysis." The older serum light chain test is rarely if ever administered because it is not particularly useful. The new Freelite test will have the name "Ultraquant" on the lab report. If your doctor is unsure where to order the test, please call the IMF hotline at (800) 452-2873, and we will be happy to give you information on how to locate these labs.

If you fall into the 30% of non-secretory patients who do not produce free light chains that can be picked up by a Freelite test, your myeloma may be assessed by full skeletal xrays as well as by whole body PET scan or by wide field MRI screening of the spine, thoracic area, lumbar region, and pelvis. The scanning is more sensitive and more specific than the xrays for detecting small bone lesions.

Although myeloma patients cannot, of course, do away with bone marrow biopsies altogether, the above tests make it possible to monitor non-secretory disease without relying upon a biopsy that can be painful and invasive. Because myeloma tends to "clump" in the bone marrow, a bone marrow biopsy is not always the most reliable way to monitor response to treatment.

What's New in Myeloma Research:
  • POEMS syndrome: definitions and long-term outcome
    Angela Dispenzieri, IMF Scientific Advisory Board Chair Robert A. Kyle, Martha Q. Lacy, S. Vincent Rajkumar, Terry M. Therneau, Dirk R. Larson, Philip R. Greipp, Thomas E. Witzig, Rita Basu, Guillermo A. Suarez, Rafael Fonseca, John A. Lust, and IMF Scientific Advisor Morie A. Gertz
    POEMS syndrome is poorly understood, making diagnosis, treatment efficacy, and prognosis a challenge.

Advocacy Update:
What's New in Clinical Trials:
  • Phase I trial of Product R
    Advanced Viral Research Corp
    For treatment of cachexia in patients with hematopoietic cancers, including MM. Trial only in Israel, at Hadassah Medical Center, Jerusalem, and Chaim Sheba Medical Center, Tel Aviv.

  • Phase I trial of Myelovax
    Apalexo Biotechnologie GmbH
    For treatment of multiple myeloma. Trial is being conducted in Munich at Ludwig Maximilian University Hospital.

  • Phase I trial of LymphoRad131 (Radiolabeled BLyS Protein)
    Human Genome Sciences
    Iodine-labeled B lymphocyte stimulator for treatment of multiple myeloma.
    LymphoRad is BLyS in its Phase I incarnation with a an I-131 attachment.
    Interested parties should contact the HGS Product Info Line at 301-309-8504.

  • Preclinical studies of Curcumin (diferuloylmethane)
    University of Texas MD Anderson Cancer Center
    Commonly ingested in turmeric and yellow mustard, inhibits NF-kappaB. Phase I trial planned to open in approximately 6 months.

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:
  • Duke Support Group Plans Dinner for MM Patients, Family and Friends - April 14, 2003
    Dr. Christina Gasparetto, Duke myeloma specialist, will speak. For info, call Louise Chut at 919-542-8181 or the Cancer Support Program at 919-684-4497.
  • Study shows public support for doctors who deceive insurers
    When medical researchers surveyed prospective jurors they found that 26 percent of their subjects believed a physician should mislead an insurance company in order to persuade the company to pay for medical care. (from the University of Chicago Hospitals)

  • Racial differences in pain treatment found
    Although this presentation at the American Pain Society is on chronic pain, its findings parallel disparities that other researchers have found between blacks and other races in other diseases and their treatment, such as cancer. (from University of Michigan)
  • 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
April 9, 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
Ralph Ferrizzi Memorial Golf Tournament
August 23, 2003
Allentown, PA
Mile High March for Myeloma
August 16, 2003
Lake Arrowhead, CA
Corporate Cup Challenge
August 26, 2003
Naperville, IL

Exciting Opportunities:
  • Robert Kyle Lifetime Achievement Awards Dinner
    August 2, 2003
    Rochester, MN

    The International Myeloma Foundation is proud to present its first Robert A. Kyle Lifetime Achievement Award to Robert A. Kyle, M.D., Professor of Medicine & Laboratory Medicine, Mayo Clinic, in recognition for his outstanding life work, clinically and in research, in the field of myeloma. The award will be presented in subsequent years to honor other professionals for their work in the field.
  • 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:
  • Bernard Levin, MD, will host People Living With Cancer's next live chat about Cancer Prevention
    Friday, April 11, 2003 from 2:00 - 3:00 PM ET.
    Dr. Levin is Vice President of Cancer Prevention at M.D. Anderson Cancer Center and Chair of the American Society of Clinical Oncology's new Cancer Prevention Task Force. He will address how to reduce the risk of developing cancer; screening tests to detect cancer in its earliest stages, when treatment is more likely to be successful; and advances in prevention research.
  • 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.
  • International Prognostic Index
    The International Myeloma Foundation is proud to be the sponsor for 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.
  • 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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