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Myeloma Minute
April 7, 2008
04.07.08
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.

ADVOCACY UPDATE

IMPORTANT! URGE YOUR SENATOR TO FUND CANCER RESEARCH AT DoD!

BACKGROUND
Senator Jack Reed (D-RI) just sent a "Dear Colleague" letter to all 100 members of the U.S. Senate, asking them to sign on to their letter in support of an appropriation of $10 million for a new Blood Cancer Research Program at the Department of Defense (DoD). "Dear Colleague" letters are common tools used by members of Congress to solicit support for legislation or a funding request.

The Department of Defense (DoD) cancer research program funded a blood cancer project from 2001 to 2006…..but the program was cut in 2007. The DoD research programs have been praised by researchers, advocates and Congress, alike, for the outstanding research they have supported and their contribution to a stronger understanding of, and improved treatment for, a wide range of cancers, including myeloma. Sen. Reed only has until Friday, April 11 to secure the support of additional senators. Most members of Congress will not support these types of "Dear Colleague" letter requests UNLESS they hear from their constituents.

For this reason, we need your help to secure the support of more members of Congress for this vital new program. Please contact your U.S. Senators TODAY and ask him/her to co-sign this important letter before April 11!

INSTRUCTIONS AND TALKING POINTS FOR CALLING YOUR SENATORS

  • Call the Washington, DC offices of your two United States Senators. If you do not know the telephone number for your Senators, you may call 202-224-3121 and the Capitol Operator will transfer you. Alternatively, you can get the telephone number for your two Senators on the Senate website, which is www.senate.gov.

  • When you reach a Senate office, ask to please speak with the Legislative Assistant that is responsible for health funding issues at the Department of Defense.

  • When you reach the staffer, you may use the following talking points:
  1. I am calling to ask Senator ______________ sign onto the Dear Colleague letter being circulated by Senator Jack Reed (from Rhode Island) in support of an appropriation of $10 million for a new Blood Cancer Research Program at the Department of Defense (DoD).

  2. The Department of Defense (DoD) cancer research program funded blood cancer projects from 2001 to 2006…..but the program was cut in 2007. The DoD research programs have been praised by researchers, advocates and Congress, alike, for the outstanding research they have supported and their contribution to a stronger understanding of, and improved treatment for, a wide range of cancers, including myeloma.
  • I urge Senator _______________ to support blood cancer research at the DoD by signing onto the Reed Dear Colleague letter before the April 11 deadline. Thank you for your attention to this important matter.


WHAT'S NEWS

Report Claims Clinical Trials Miss Many Populations
A new analysis of the American clinical trial process suggests that the system for testing new drugs has routinely excluded or under-represented women, older people, minorities, disabled individuals and rural populations for decades. (from US News and World Report)

TV drug ads should list FDA hotline, lawmakers say
Citing a new Consumer Reports poll, two members of Congress urged the FDA to mandate that all television advertising for prescription drugs include information for consumers to report serious side effects to the agency. The poll found that 16% of respondents who had taken a prescription drug had experienced a side effect serious enough to send them to the doctor or hospital, but only 35% were aware that such side effects could be reported to the FDA. (from the Los Angeles Times)

FDA Releases Five-Year Drug Safety Plan
The FDA has unveiled a five-year program aimed at employing more safety reviewers and risk-management and medication-error experts to improve post-market drug security. The agency, which will receive nearly $30 million annually under the plan, also intends to boost its communications and technological capabilities. (from FDANews by way of "The Pink Sheet" Daily)

Proteolix's Carfilzomib Receives Orphan Drug Designation for Treatment of Multiple Myeloma
Carfilzomib is a selective blocker of proteasome activity. (from the Earth Times)

IMF Chair Dr. Brian Durie is featured guest on a new satellite radio service for physicians: ReachMD, XM 157
The segment is called "New Treatments for Multiple Myeloma." ReachMD has provided the IMF with a direct link that does not require registration. However, we ask that you do register (it is free of charge), especially if you are a physician, to encourage future broadcasts on this topic. During the interview Dr. Durie addresses general practitioners about early warning signs that may indicate myeloma, and about the need for accurate diagnosis. He also explains how the "novel therapies," REVLIMID®, VELCADE® and THALOMID®, are changing the course of treatment.

Consensus on Care: New Insights on Novel Therapies in Multiple Myeloma
At the 33rd Annual Oncology Nursing Society Meeting in Philadelphia, PA, the IMF’s Nurse Leadership Board will present their key consensus recommendations to provide nurses with valuable clinical management tools for improving patient care at at a breakfast symposium on May 16, 2008.

How to Support a Loved One Reeling From Cancer Diagnosis
Even as the medical community has gotten better at detecting and treating cancer early -- allowing many patients to live longer -- people are understandably overwhelmed by the devastating news of a diagnosis. So family and friends grapple with how to best offer comfort. (from the Wall Street Journal by way of Yahoo Finance)

Cancer Treatment adds Years to Patients Lives
IMF Scientific Advisor Dr. Guido Tricot is featured in this short webcast from MyFox Utah.

Thalidomide Pharmion® Receives Marketing Approval from Australian Therapeutic Goods Administration for Treatment of Newly Diagnosed Multiple Myeloma
Approval is for use in combination with melphalan and prednisone for patients with untreated multiple myeloma or ineligible for high dose chemotherapy. Additionally, Thalidomide Pharmion was granted marketing approval in combination with dexamethasone for induction therapy prior to high dose chemotherapy with autologous stem cell rescue, for the treatment of patients with untreated multiple myeloma. This represents the first oral cancer therapy ever registered for patients newly diagnosed with multiple myeloma in Australia. (from BusinessWire)


NEW! The Myeloma Manager™ Personal Care Assistant™

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


WHAT'S NEW IN RESEARCH
ARTICLES
(IMF Scientific Advisors are marked with an *)

  • VEGF Inhibition and Renal Thrombotic Microangiopathy
    Vera Eremina, M.D., Ph.D., J. Ashley Jefferson, M.D., Jolanta Kowalewska, M.D., Howard Hochster, M.D., Mark Haas, M.D., Ph.D., Joseph Weisstuch, M.D., Catherine Richardson, M.D., Jeffrey B. Kopp, M.D., M. Golam Kabir, M.D., Peter H. Backx, Ph.D., Hans-Peter Gerber, Ph.D., Napoleone Ferrara, M.D., Laura Barisoni, M.D., Charles E. Alpers, M.D., and Susan E. Quaggin, M.D.
    NEJM. March 13, 2008; Volume 358:1129-1136

CLINICAL TRIALS

  • DOXIL® trials

    Phase I trial of ARRY-614
    Sponsor: Array BioPharm
    Indication: orally active p38/Tie2 inhibitor in dose escalation trial

    Phase I/II trial of CB3304 (noscapine)
    Sponsor: Cougar Biotechnology
    Indication: oral alkaloid derived from opium; trial for relapsed/refractory mm.
    Open site:NY Presbyterian Cornell/Weill Med. Center, PI Ruben Niesvizky, Contact April Larow, RN, 212-746-4829

    Phase I/II trial of hydroxychloroquine (plaquenil)
    Sponsor: NCI
    Indication: FDA-approved anti-inflammatory drug for malaria, lupus, and rheumatoid arthritis in trials with Velcade for rel/ref mm.
    Site: Abramson Cancer Center at the University of Pennsylvania, Edward Stadtmauer PI, contact tel 215-662-7910.

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.

UPCOMING SEMINARS AND CLINICAL CONFERENCES
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.

Vienna Patient & Family Seminar - Vienna Austria
April 25-26, 2008
Barcelona Doctors Regional Community Workshop - Barcelona, Spain
May 28, 2008
Valencia Patient & Family Seminar - Valencia, Spain
May 31, 2008
Pamplona Regional Community Workshop for Doctors/Patients - Pamplona, Spain
June 2, 2008
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
5th International Symposium on Clinical Applications of Serum Free Light Chain Analysis - Bath, United Kingdom
September 18-19, 200

UPCOMING EVENTS
SpringAH, SPRING! Time to start planning your FUNdraisers!
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:
Third Annual Music Against Myeloma - New York, New York
April 24, 2008
A Song for Ireland - Philadelphia, PA
April 27, 2008
9th Annual "JC" Golf Tournament - St. Cloud, Minnesota
May 17, 2008
IMF Charity Golf Outing - Yorkville, Illinois
July 12, 2008
ONGOING EVENTS
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.
Spirit of 76
James Conrad is 76. On New Year's Day, he started his 'Run for a Cure' with an objective of 760 miles and donations/pledges of $7600.

HELP THE IMF
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!
How About Hong Kong?
Or Cancun or Sydney. 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 these 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.

ITEMS OF INTEREST

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!


BANK ON A CURE®

International Staging System

NexProfiler
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.


Sign up for a FREE Subscription to Myeloma Today, the
Official Newsletter of the IMF!

Many thanks to the supporters of The Myeloma Minute:
Celgene Corporation 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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