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May 16, 2003 Myeloma Minute

What's News

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. Now that VELCADE has been approved by the Food and Drug Administration, can you tell me if I should try this drug and how much it will cost?

A. Obviously, it is important that any treatment decisions be fully discussed with your doctor. We will provide some general information on VELCADE which you can use as a basis for discussing this option with your doctor. VELCADE is a new treatment for myeloma that works in a different way than any previous therapy for myeloma. It is a drug that inhibits an enzyme complex called the proteasome which plays a critical role in the regulation of cell growth and survival. VELCADE is the first new drug approved for the treatment of myeloma in more than a decade, and it was approved just this past Tuesday, May 13th. Millennium Pharmaceuticals is the drug company responsible for the development of this drug and is the company from which the drug must be obtained.

While the entire myeloma community is excited about the approval of VELCADE because of its effectiveness in many patients who had failed multiple therapies, it is important to state that it is appropriate only for certain patients. VELCADE is approved for the treatment of multiple myeloma patients who have received at least two prior therapies and have demonstrated disease progression on the last therapy. Thus, if you fit into that category, you should discuss VELCADE as a treatment option with your doctor.

It has not yet been determined if this drug is appropriate as first-line therapy for newly diagnosed patients. If you have recently been diagnosed with myeloma and have not yet received any treatment, you may be interested in participating in a clinical trial testing VELCADE as a first treatment. A Phase II clinical trial of VELCADE as first-line therapy is currently open and enrolling patients at four centers around the US. For further information on these trials, and APEX, the VELCADE multi-center Phase III trial, please click on the links or call the IMF at 800-452-2873

The cost of VELCADE outside of a clinical trial has been reported in the financial press as being close to $20,000 for a typical course of treatment. Since VELCADE is an IV medication, this should facilitate coverage by Medicare and private insurance companies. In addition, Millennium Pharmaceuticals is committed to providing patient access through a comprehensive patient assistance program. For additional medical information and for questions about reimbursement, patient assistance, and drug availability please call 866-VELCADE.

Finally, while VELCADE appears to be generally well-tolerated, as with most drugs, there may be side effects including nausea, fatigue, diarrhea, constipation, headache, decreased appetite, decreased platelets and red cells in the blood, fever, vomiting , and peripheral neuropathy (numbness and tingling, and occasionally pain in the extremities). Of course, not all patients will suffer with all of these side effects.

For more information on VELCADE, please see these links:

What's New in Myeloma Research:
  • High-Dose Chemotherapy with Hematopoietic Stem-Cell Rescue for Multiple Myeloma
    J. Anthony Child, M.D., Gareth J. Morgan, Ph.D., Faith E. Davies, M.D., Roger G. Owen, M.D., Susan E. Bell, D.Phil., Kim Hawkins, M.Sc., Julia Brown, M.Sc., Mark T. Drayson, Ph.D., Peter J. Selby, M.D.
    Study indicates that high-dose chemotherapy plus hematopoietic stem-cell rescue is effective in patients with multiple myeloma who are less than 65 years of age.
  • Increased angiogenesis can be found in many hematological cancers.
    Preliminary data indicate activity of VEGF-tyrosine kinase inhibitors in AML. Clinical research is now aimed at testing antiangiogenic treatment strategies in several hematologic neoplasms as well as identifying the best candidate patients for specific approaches.
  • Novel therapies in multiple myeloma.
    IMF Scientific Advisors Singhal S, Mehta J.
    Although these novel drugs are typically used for treating disease that is refractory to or has relapsed after cytotoxic therapy, it is likely that they will start being used as part of frontline therapy, either by themselves or in combination with chemotherapy.

What's New in Clinical Trials:
  • New trial opens with VELCADE as front-line therapy
    "Phase II Trial of PS-341 Alone and in Combination with Dexamethasone in Previously Untreated Multiple Myeloma Patients." This is an investigator-initiated trial that is currently enrolling patients at the following four sites:
    • Alta Bates Comprehensive Cancer Center; Berkeley, Ca. Contact: Jeffrey Wolf, M.D. - (510)-204-1591
    • Cedars-Sinai Comprehensive Cancer Center; Los Angeles, Ca. Contact: Brian Durie, M.D. - (310) 423-0702
    • Comprehensive Cancer Center of the Desert; Palm Desert, Ca. Contact: Larry Leichman, M.D. - (760)-416-4860
    • St. Vincent's Comprehensive Cancer Center; New York City, NY. Contact: Sundar Jagannath, M.D. - (212)-604-6068

For further information, please contact the IMF hotline at (800) 452-2873.

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:
  • The National Bone Marrow Transplant Link has published Caregivers' Guide for Bone Marrow/Stem Cell Transplant, Practical Perspectives. It is available for $12 a copy (1-10 copies) from nbmtLink at 800-LINK-BMT (800-546-5268) or nbmtlink@aol.com. Visit the nbmtLINK website at www.nbmtlink.org.

    On Saturday, June 21, 2003, the nbmtLink will host its Eighth Annual "Ask the Experts" BMT Educational Forum in Livonia, Michigan for patients, families, caregivers, and health professionals. CEU's will be available for nurses. The Caregivers' Guide will be officially introduced at this event and made available to participants. The program is free and includes lunch. For further information, contact the nbmtLink at the above phone number or email address.
  • 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.
  • Japan Patient & Family Interactive Seminar
    November 1, 2003

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.

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
    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.
    • 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 finished and will be up on the web this coming week. If anyone hasn't sent in their square for the 4th quilt, it's overdue. Please contact Suzanne Battaglia (sbattaglia@myeloma.org) if for some reason you cannot complete it, so we can release your square.

    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.

    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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