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August 2, 2003 Myeloma Minute
What's News
  • 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. Look for a full account of this exciting evening in next week's Minute.
  • Gene profiling may help treat cancer and reduce unnecessary use of certain drugs
    It's all over the lay press: Baylor researchers report that genetic profiling could help determine the most effective drugs for patients with breast cancer. Today breast cancer, tomorrow--thanks to Bank On A Cure™--myeloma. (this version of the story from MSNBC)

  • It's not too late to register for the Atlanta Patient & Family Interactive Seminar
    August 15-16, 2003
    Why wander around wondering where to find the best and latest information? Why feel alone in your battle against myeloma? At the Atlanta Patient & Family Seminar, not only will you find out what you need to know about myeloma, but you will meet scores of others fighting the same fight. And that by itself is worth two days of your time.

  • Pizza helps Italians reduce cancer risk
    It has nothing to do with myeloma, but you gotta love a study that tells you the more pizza you eat, the healthier you may become. (from the Seattle Post Intelligencer)

Question of the Week

In this 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: Is there a connection between multiple myeloma and POEMS syndrome? Can a patient be diagnosed with both or are symptoms similar?

A: POEMS is an acronym for a group of signs (problems detectable by the doctor) and symptoms (problems felt by the patient) that indicate this very rare bone marrow disorder. It is different from myeloma in presentation and behavior. The letters in POEMS stand for

  • P: peripheral neuropathy (numbness, tingling, a "burning" sensation, and weakness of the feet and hands), the most common symptom suffered by patients
  • O: organomegaly (enlarged organs, such as the liver, lymph nodes, and spleen)
  • E: endocrinopathy (abnormal hormone levels)
  • M: monoclonal plasmaproliferative disorder (a collection of abnormal plasma cells); usually accompanied by at least one abnormal bone xray associated with these plasma cells.
  • S: skin changes, including increased pigmentation, increased body hair, thickening of the skin, etc.

All five of the POEMS features are not required for a diagnosis; rather it must be considered if there is neuropathy and a monoclonal protein.

Patients sometimes confuse POEMS syndrome with multiple myeloma. The symptoms and potential complications of these two diseases are radically different, but that there is a small overlap that causes some confusion. You can see that the "M" in POEMS ("monoclonal proliferative disorder"), for example, is a source of potential confusion with myeloma, because both myeloma and POEMS result, at least in part, from the proliferation of plasma cells. Occasionally, patients with myeloma also have problems with peripheral neuropathy (the "P" in POEMS), but it is far more common to see this problem in POEMS patients than in patients with active myeloma. It is, in fact, the most common presenting problem in POEMS Syndrome patients, who are usually first referred to a neurologist before they are sent to a hematologist.

Some of the confusion may also arise from the term "osteosclerotic myeloma," a condition that pertains only very rarely to patients with multiple myeloma, but which is one of the two pathologic causes of POEMS syndrome (the other is Castleman¹s Disease, a rare disorder characterized by non-cancerous growths that may develop in lymph nodes throughout the body). Dr. Gregory Mundy of the University of Texas Health Science Center at San Antonio nicely defined osteosclerotic myeloma as "an increase in the formation of new bone" in his article on bone disease that appeared in last week¹s Myeloma Minute. Most of the time, of course, myeloma patients suffer from loss of bone tissue, not from an irregular increase in the amount of bone.

For further information on POEMS syndrome, you may want to consult the article entitled "POEMS Syndrome: definitions and long-term outcome," by Angela Dispenzieri et al (Mayo Clinic) that appeared in the November 27, 2002 issue of the journal of the American Society of Hematology, BLOOD. There is a POEMS patient in Nova Scotia who has started an ACOR list serve. If you have POEMS or know someone who does, you may contact her at poemsbabe@hotmail.com or at 902-461-0624 for information on joining the list.

What's New in Research:

What's New in Clinical Trials:
  • Phase I Trial of VELCADE and Thalidomide. Phase I exploratory study of combination VELCADE and Thalidomide in refractory multiple myeloma. Investigator: Bart Barlogie, MD, PhD (510) 686-6000

  • Phase I/II Trial of VELCADE + Adriamycin + Dexamethasone. (UK only) Phase I/II study to assess the safety, efficacy, and tolerability of combination therapy with VELCADE, Adriamycin, and dexamethasone (PAD) as primary therapy for patients with multiple myeloma. Investigator: Jamie Cavanaugh, MD +440 207 601 8202
  • Myeloma Matrix (updated 8/1/03)
    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.

  • Cancer Trials Support Unit: A Web Based System That Offers Efficient and Effective Tools for Clinical Trials Management.
    The Cancer Trials Support Unit (CTSU) is an NCI funded program to facilitate participation (by both patients and physicians) in phase III NCI sponsored Cancer treatment 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.

Quality of Life Update:

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 multiple myeloma patients and their families and friends, let us know.

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.

Mile High March for Myeloma
August 16, 2003
Lake Arrowhead, CA
Ralph Ferrizzi Memorial Golf Tournament
August 23, 2003
Allentown, PA

Exciting Opportunities
  • 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.

  • Retreat with Marilyn Youngbird and Dr. Lewis Mehl-Madrona
    August 11-18, 2003
    A one week retreat at the beautiful Sunstone Healing Center in Tucson, Arizona, with Native American healer, Marilyn Youngbird and Dr. Lewis Mehl-Madrona, who spoke at the Los Angeles Patient & Family Seminar.

  • Third Multiple Myeloma Quilt of Courage is Online
    The third quilt is finished and on the web. Like the two before it, it is both beautiful and moving. Take a look for yourself.

    Those of you who have ordered quilt squares for the 4th quilt and have not yet returned them, please do so at your earliest convenience. We cannot put the quilt together and up on the web site until all the squares are returned. If you are not able to finish your square, please advise Suzanne at sbattaglia@myeloma.org so that she can give members on the waiting list the space she is holding for you.

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.
  • 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. New tapes have recently been added from the Seattle Patient & Family Seminar.
  • The Catlett Card Series
    The Catlett Cards are designed by Irma Catlett in memory of her husband Lou. The stunning pictures on these cards chronicle their travels together and honor Lou and the life they shared. Blank on the inside, they are perfect for thank-you's, birthdays, anniversaries, and just general correspondence. All proceeds go to support the programs of the IMF.
  • IMFers Esther and Herman Adler, of Adler & Company Jewelers in Los Angeles are continuing their generous offer to help the IMF. 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.

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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