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May 2, 2003 Myeloma Minute

Get beautiful flowers delivered for Mother's Day and help the IMF!

Order Mother's Day Flowers & Gifts from 1-800-flowers or FTD.com and they will donate a portion of your order to the IMF!

What's News

  • Thalidomide May Carry Dementia Risks: Case Report
    A case report in the The New England Journal of Medicine describes the experience of a patient taking thalidomide in combination with dexamethasone who developed symptoms of dementia which went away when the therapy was stopped. (from Yahoo/Reuters Health)
  • The IMF is pround to announce that the article "Whole-Body 18F-FDG PET Identifies High Risk Myeloma," written by IMF Chairman of the Board Brian G.M. Durie, MD and Alan D. Waxman, MD, Allesandro D'Agnolo, MD and Cindy M. Williams, BS, has received the Journal of Nuclear Medicine's First Place Award for Clinical Investigations.
    Read the November 2002 JNM press release for the article: "FDG PET Reassures and Reveals High Risk Multiple Myeloma."
  • Fears on TCE linger after years
    Federal court settlements led to the creation of a free medical testing program to screen for cancers related to TCE contamination, including myeloma. (from the U of Arizona Health Sciences Center)
    People often call the IMF and ask "What can I do to help?" The IMF is delighted to announce MAIL FOR THE CURE, a simple but very powerful concept by which YOU can make a big difference.

Question of the Week

In each issue of the Myeloma Minute, we 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. My brother was just told he has a very rare form of myeloma called IgM myeloma. I can't find anything on it and keep coming across discussions of something called "Waldenstrom's macroglobulinemia." Can you help?

A: You have raised a very interesting and complicated question. There is a specific disease called Waldenstrom's macroglobulinemia that is different from myeloma. What causes the confusion with myeloma is that Waldenstrom's macroglobulinemia also involves abnormal plasma cells and is characterized by excess monoclonal IgM proteins in the blood.

In Waldenstrom's macroglobulinemia, the abnormal plasma cells invade the bone marrow, lymph nodes, and spleen, and produce excessive amounts of IgM protein. The excess IgM in the blood causes hyperviscosity (thickening) of the blood. Waldenstrom's macroglobulinemia is actually considered to be a form of indolent lymphoma and not a form of myeloma.

We have listed the seven types of myeloma and the percent of cases they represent to give you an idea of how rare IgM myeloma is: IgG -- 59%; IgA – 24%; Bence-Jones – 13%; non-secretory myeloma – 2%; IgD – 2%; IgM –less than .1%; IgE -- less than 0.01%.

The following table should help you distinguish between the two diseases:

---- Ig M myeloma Waldenstrom's macroglobulinemia
Clinical criteria Bone lesions Enlarged lymph nodes, liver, and spleen
Marrow morphology Plasma cells Mixture of plasma cells and lymphocytes
Special testing CD 20 negative
Chromosome [11:14 translocation]
CD 20 positive
No myeloma-type translocations

These distinctions are general and, in fact, no one has completely agreed upon the precise criteria for the differences between IgM myeloma and Waldenstrom's macroglobulinemia.

What is most important to keep in mind is that usually the treatment and outcome for the extremely rare cases of IgM myeloma is essentially the same as that for the typical myeloma. However, in the unusual case where there are features of the IgM myeloma that are more like those of Waldenstrom's macroglobulinemia, then there may be additional treatment options available to those patients. For example, if the IgM patient happens to be CD20 positive, then Rituxan (rituximab) is an option. If there are other indicators of Waldenstrom's macro )see table above.Fludara (fludaribine), and Cladrabine (2CdA) which are normally not used in myeloma may be helpful to these patients.

For information on Waldenstrom's macroglobulinemia you can contact the International Waldenstrom's Macroglobulinemia Foundation (IWMF) at www.iwmf.com or by telephone at 941-927-4963. For information on myeloma, our educational materials (Patient Handbook 2002/2003 Edition and the Concise Review of the Disease and Treatment Options 2003 Edition) will be applicable to IgM myeloma.

In addition, if your brother calls us at the Hotline (800-452-CURE or 800-452-2873) from the US or Canada, we can put him in touch with several patients who have also been diagnosed with IgM myeloma.

What's New in Myeloma Research:
  • Drug resistant multiple myeloma may be treated with the farnesyl transferase inhibitor, FTI-277.
    The researchers concluded: "Similarly, 8226 cells selected for resistance to various chemotherapeutic agents, which resulted in either P-glycoprotein overexpression, altered topoisomerase II activity, or elevated glutathione levels, were equally sensitive to FTI-277. These pPreclinical studies suggest that prenylation inhibitors may represent new therapeutic agents for the treatment of refractory or drug resistant multiple myeloma. (from Clinical Oncology Week via NewsRx.com)

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.

Advocacy Update:
  • Cancer Research Advocates Must Be Vocal to Reverse Funding Trends
    With public attention focused away from domestic concerns over most of the past two years, congressional and administration attention to medical research funding—and funding for cancer research in particular—has been overshadowed....So while Congress technically fulfilled its promise to double the NIH budget over five years, it did so by increasing funds for the newly created post-September 11 bioterrorism priorities and at the expense of other medical research.

Quality of Life Update:
  • Support Group Leader Retreat - June 27-29, 2003
    The IMF understands that support group leaders need support too! That's why we're pleased to once again offer this exciting, supportive program at Duke University in Raleigh, NC. The Leader Retreat is designed to help group leaders from across the country and around the world get together and exchange ideas, suggestions and success stories, while learning new skills and making new friends.

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.

4th Annual JC Invitation Golf Tournament
May 17, 2003
Wapicada Golf Course, Sauk Rapids, MN
From Handel to Hawkins
June 8, 2003
Bronx, NY
Robert Cait at the Laugh Factory
June 11, 2003
West Hollywood, CA
New! Register online for this event.
"Hair Cares"
June 22, 2003
Curries Hair, Skin & Nail Salon, Glen Mills, PA

5th Annual Corporate Challenge
June 30, 2003
Stamford, CT

Multiple Musicians Against Multiple Myeloma
July 6, 2003
Sea Cliff, NY
Wamp Swim-athon
July 19, 2003
West Hartford, CT
Mile High March for Myeloma
August 16, 2003
Lake Arrowhead, CA
Ralph Ferrizzi Memorial Golf Tournament
August 23, 2003
Allentown, PA
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.
  • Ribbon of Hope Making A World of Difference Anniversary Gala
    October 4, 2003
    Paul Allen's Experience Music Project Museum in Seattle, WA

    The evening promises to be the best ever, both creatively and financially! The EMP is Seattle's most unique architectural wonder. The Frank O. Gehry-designed building houses a new interactive museum that combines performance space, technology and revolutionary architecture in a facility created to celebrate the heritage and anticipate the future of American popular music.
  • Multiple Myeloma Quilt of Courage
    The third quilt is on its way to the quilter to be pieced together. Several people who reserved squares for this quilt did not return their squares; therefore, we have had to move some people who reserved squares for the 4th quilt up to the 3rd. This leaves some squares still available for the 4th quilt so if you're interested, please email Suzanne Battaglia (sbattaglia@myeloma.org).

  • The following people should keep their eyes open for the 3rd quilt to appear on the web. They are:

Jeanne Bechtel
Vanessa Bernstein
Harriet Bertsche
Lynn Betts
Anna Cazale
Leslie Cohen
Samona Creasy
Susan Emery

Keith Garber
Hal Gleason
Pat Hall
Anne Heutlinger
Barbara Jewell
Samara Krugman
Christine Meeks
Kim Patocka

Serafin Salgado
Christine Storms
Judy Van Schoyck
Laura Schultz
Delfina Theimer
Patricia Wascher
Isabelle Weinberg
Tracy Wright

  • Time for Mother's Day! You can make your mother a very happy woman with the help 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:
    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 new 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.

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.

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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