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Myeloma Minute
June 12, 2008
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.


President Bush Signs Landmark Genetic Nondiscrimination Information Act (GINA) Into Law
GINA is the first and only federal legislation that will provide protections against discrimination based on an individual’s genetic information in health insurance coverage and employment settings. (from Science Daily)

Managing the Side Effects of Novel Agents for Multiple Myeloma: Guidelines From the International Myeloma Foundation Nurse Leadership Board
Published in the Clinical Journal of Oncology Nursing, Volume 12, Supplement, June 2008, these guidelines were written by the IMF Nurse Leadership Board, made up of experienced specialty oncology nurses, and are the first comprehensive guidelines for managing side effects from lenalidomide, thalidomide, bortezomib, and steroids used in the treatment of multiple myeloma.

Medicare Updates Its List of Recognized Sources to Help Make Coverage Decisions for Anti-Cancer Chemotherapy Drugs
CMS will recognize the National Comprehensive Cancer Network (NCCN) Drugs & Biologics Compendium™ as an additional source of information and cease use of the no longer updated or maintained American Medical Association Drug Evaluations (AMA-DE) compendium. (from the Centers for Medicare and Medicaid Services)

News from ASCO (AmericanSociety of Clinical Oncology 44th Annual Meeting in Chicago, IL

Hey You! Yeah You!
The IMF Patient & Family Seminar is coming to Boston on July 25-26, 2008

Newly diagnosed? Changing therapies? Thinking about a clinical trial? Experiencing side effects? No matter what your question, you will find the answers from the experts at the seminar. Reserve your spot. You will not regret it.

Oh, and there are just a couple of seats left for the Seattle Patient & Family Seminar. We are limited by what the Fire Marshall says is the capacity of the room. So, if you have been procrastinating about registering for Seattle, you need to register today.

FDA drug safety review to start with Medicare
Under intense criticism for its slow response to drug and device safety problems, the Food and Drug Administration last month announced a new initiative to detect adverse event patterns and warn physicians earlier. (From American Medical News)

Astex Announces New Drug Discovery Alliance with Janssen Pharmaceutica N.V.
The new agreement grants Janssen Pharmaceutica a worldwide exclusive license to compounds arising from Astex’s novel FGFR inhibitor program. Recent publications have highlighted the role of activating mutations, amplifications and over-expression of FGFRs in the pathogenesis of a variety of human tumours including multiple myeloma. (from PharmaLive)

Seattle Genetics Initiates Phase Ib Myeloma Trial
Seattle Genetics has announced that its collaborator, Genentech, has initiated a Phase Ib clinical trial of SGN-40 in combination with Velcade for patients with relapsed or refractory multiple myeloma. (from Red Orbit)

Health trust backs down in cancer drug row
Patient who had been denied access to VELCADE to help prolong his life is celebrating after a U-turn by health bosses. (from the Yorkshire Post)

Bone Pain Can Be A Sign Of Myeloma - Patients And Doctors Join Forces To Raise Awareness Of Early Myeloma Diagnosis
A recent international survey conducted by Myeloma Euronet among patients and physicians has revealed that advanced disease stage due to late diagnosis constitutes one of the greatest barriers to myeloma treatment and care. (from Medical News Today)

Do Good. Feel Good. FUNdraising!
You know you want to do something in your community to raise funds and public awareness about myeloma, but deciding on what to do can be confusing. The IMF's FUNdraising program can help you host a bake sale/car wash/dinner/fashion show/holiday boutique/white elephant sale/craft sale/golf tournament...whatever! Why not start planning today? Contact Suzanne Battaglia at sbattaglia@myeloma.org with your ideas.

New discovery demonstrates DNA link
A recent discovery at TCD’s Institute of Molecular Medicine, in collaboration with the National Cancer Institute USA, has demonstrated a link between DNA repair genes and the development of multiple myeloma. (from the Irish Medical Times)


Kennedy and Hutchison Drafting Comprehensive Cancer Bill
Senators Ted Kennedy (D-MA) and Kay Bailey Hutchison (R-TX) are drafting legislation with input from the cancer community that would impact all aspects of cancer care.  This update to the National Cancer Act of 1971 will advance the continuum of cancer care, including access to quality care, prevention and early detection, research, and survivorship.    The legislation will also increase funds for research at the National Cancer Institute and other federal agencies.

Earlier this month, Senator Kennedy, who led efforts to pass the original National Cancer Act, held a press conference with Senator Hutchison and cyclist and testicular cancer survivor Lance Armstrong to call on Congress to coordinate all of the resources available for the fight against cancer.

Despite the recent cancer diagnosis of Senator Kennedy, his legislative staff said that the Senator plans to introduce the comprehensive cancer bill in the next few weeks.  IMF will continue to keep the myeloma community updated on this exciting piece of legislation. 

(IMF Scientific Advisors are marked with an *)

  • Cyproheptadine displays preclinical activity in myeloma and leukemia
    Xinliang Mao, Sheng-ben Liang, Rose Hurren, Marcela Gronda, Sue Chow, G Wei Xu, Xiaoming Wang, Reza Beheshti Zavareh, Nazir Jamal, Hans Messner, David W Hedley, Alessandro Datti, Jeff L Wrana, Yuanxiao Zhu, Chang-xin Shi, Kyle Lee, Rodger Tiedemann, Suzanne Trudel, A Keith Stewart*, and Aaron D Schimmer
    Blood published 23 May 2008, 10.1182/blood-2008-02-142687


  • New trials at Weill-Cornell Medical Center, New York, NY; Ruben Niesvizky, MD, Principal Investigator.  Contact April Larow, RN, at 212-746-4829.
    • Phase I/II open-label study of the safety and efficacy of PD 0332991 in combination with bortezomib and dexamethasone in patients with refractory multiple myeloma.
    • Phase Ib multicenter dose escalation study of carfilzomib with lenalidomide and dexamethasone for safety and activity in relapsed multiple myeloma
  • Phase: preclinical
    Drug name: cyproheptadine ( Dronactin, Periactin, Periactinol)
    Sponsor: Princess Margaret Hospital, Mayo Clinic, Mt Sinai Hospital
    Indication: FDA-approved antihistamine and serotonin antagonist (now off-patent) that inhibits myeloma growth in mouse models.
If you would like more information about any clinical trial, you can call the IMF Hotline at 800-452-CURE. The Myeloma Matrix has a current list of all myeloma trials from pre-clinical to recently FDA approved. 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 EmergingMed, with whom the IMF has entered into a partnership 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 materials from the National Cancer Institute (NCI). To see the summaries of newsworthy clinical trial results, visit the National Cancer Institute Multiple Myeloma Trial Results.

Note: Some of the international seminar cities have been set, but the venues and agendas are still in the works. Check back often if you are interested in attending, as we post the sites and speakers as they are confirmed.

Ulm Regional Community Workshop - Ulm, Germany
June 25, 2008
Stuttgart Regional Community Workshop - Stuttgart, Germany
June 26, 2008
Seattle Patient & Family Seminar - Seattle, Washington
June 27-28, 2008
Second European Multiple Myeloma Symposium 2008 - Graz, Austria
June 27, 2008
Boston Patient & Family Seminar - Boston, Massachusetts
July 25-26, 2008
Short Hills Patient & Family Seminar - Short Hills, New Jersey
August 8-9, 2008
San Diego Patient & Family Seminar - San Diego, California
August 22-23, 2008
Myeloma Canada: Patient, Family & Healthcare Professionals Conference - Toronto, Canada
September 12-13, 2008
5th International Symposium on Clinical Applications of Serum Free Light Chain Analysis - Bath, United Kingdom
September 18-19, 2008
Paris Patient & Family Seminar - Paris, France
October 10, 2008
Rome Patient & Family Seminar - Rome, Italy
October 17, 2008

SpringHot Time in the Summertime!
From a day of beauty to a walk in the clouds, from yard sales to concerts, IMFers are creating fun days to raise money to help support the important work that the IMF is doing in both research and education. Check out the FUNdraisers below and show your support by donating to their effort online:
III Augusto Mario Schirinzi Memorial Golf Tournament - Florence, Italy
June 21, 2008
7th Annual Multiple Musicians against Multiple Myeloma (MMAMM) - Sea Cliff, New York
July 13, 2008
Carolyn Czerkies Charity Golf Outing - Yorkville, Illinois
July 19, 2008
Cents for Cells
Beth Morgan is helping the IMF by raising a penny for each stem cell that will be collected for her BMT. She has dedicated Cents for Cells to the memory of Chris Hollyer.
Commissions for Chris: A Campaign to Honor Chris Hollyer
Jo Marie Gray is donating her new-client commissions from the sale of Arbonne Cosmetics to the Chris Hollyer Research Fund at the IMF.
Clyde's Ride for the Cure
Clyde is riding his bicycle to support the work of the IMF. "I say, 'until there is a cure I ride for the IMF.'"
Debbie Exner's Walk for Myeloma
Debbie walked the PF Chang Half Marathon in Phoenix on January 13, 2008 to raise money for the IMF in honor of her mother. You can still donate to her cause.
Losing Weight to Gain Awareness
Debi is losing weight to raise money for research and the awareness programs of the IMF.
Miles for Myeloma
Larry Bartolin is a six-year survivor of multiple myeloma, and is riding his motorcycle to raise funds and public awareness.

As a non-profit organization, the IMF is completely dependent on the support of our members. Tax-deductible 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. And you can order beautiful tribute cards to send out to your friends and family every time you make a donation in their honor to the IMF.We sincerely thank you for your support.
Shop for the IMF
Shop with the leading merchants on the Internet, receive the same price as anyone else visiting their sites, and support the IMF at the same time!
7 Days in Italy? Meraviglioso!
No matter where you want to go, IMF Travel Advantage has a package for you.

Read the latest issue of the IMF Travel Advantage newsletter for this and other fabulous trips. Great prices and you are helping the IMF with every vacation.
Caregiver Daily Journal

Caregiver Daily Journal
If you know a caregiver, the IMF's own Sylvia Baca has written a journal to help document the daily care they give their loved one. It's $25, with all profits going to support the programs of the IMF..

Sarah Klein's Bracelets

Sterling Bracelets by Sarah Klein
Sarah Klein's father, Benson, was diagnosed with myeloma in 1998, and has been in remission for 8 years.
Sarah wants to give back to the IMF in her own creative way and has designed two special bracelets made up of semi-precious healing stones. A portion of the proceeds from the sale of these bracelets is being donated to the IMF.

Multiple Colors for Multiple Myeloma Keychains and Earrings
Bring rainbows of happiness, color and light into your loved ones' lives with an IMF keychain or Swarovski crystal earrings.

Arbonne Cosmetics
Jo Marie Gray is donating her new-client commissions from the sale of Arbonne Cosmetics to the Chris Hollyer Research Fund at the IMF.
IMF Logo Items
Let the world know that you support the groundbreaking research and innovative patient support programs of the IMF with a hat or shirt or bracelets!
See more exciting ways to help the IMF continue its important work in education, support and research.


Have you downloaded your Myeloma Manager™ Personal Care Assistant™

Another exciting first from the IMF!
Free software to help manage and understand your lab results, and more!

Multiple Myeloma: Determining Prognosis and Choosing Therapy
Medscape online CME featuring IMF Scientific Advisor Seema Singhal, MD,

National Cancer Institute Announces Availability of New Easy to Read Radiation Therapy Educational Resources

Written for patients and health care providers, this new radiation therapy series includes:

Designed in easy-to-read and understand formats, these resources provide straightforward information to help patients understand how radiation therapy works and how to best manage its side effects. The patient-centered publications encourage individuals to fully participate in their care by providing personalized tips and key questions to foster discussion between patients and providers.

Help for Underinsured Myeloma Patients
Thanks to the advocacy of the IMF, the Chronic Disease Fund has received an infusion of money to help them meet the needs of underinsured patients with multiple myeloma. The fund is designed to help patients with their insurance co-payments and/or their Medicare Part D 'doughnut holes.' Patients must qualify based on financial need. To speak with a representative of the Chronic Disease Fund, please call 877-968-7233, or contact them through their web site at cdfund.org.

Mensajero del Mieloma
La IMF quiere enviar información sobre el mieloma en español a todos los pacientes, familiares e interesados. Para suscribirse al correo electró nico (enviaremos cuatro ejemplares al año), por favor, env íe su dirección a mensajero@myeloma.org. ¡Gracias!


International Staging System

A tool to help understand the current status of the disease and the questions you should be asking.

Check out HealthTalk's Multiple Myeloma Education Network and Andrew Schorr's Patient Power.

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Official Newsletter of the IMF!

Many thanks to the supporters of The Myeloma Minute:
Celgene Corporation, Millennium Pharmaceuticals and The Binding Site.
Please call the hotline (800) 452-CURE (800-452-2873) or email TheIMF@myeloma.org if you have any questions.
Copyright 2008. International Myeloma Foundation. All Rights Reserved.

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