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Myeloma Minute
September 28, 2011

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


Going to ASH? Pre-register now for "Myeloma Questions and Controversies: New Developments in 2011 That Impact Diagnosis, Prognosis, and Treatment
In this interactive, case-based didactic program, expert faculty members discuss evolving data in the optimal management of patients with multiple myeloma--from diagnosis to treatment. Audience participation includes both polling questions and question and answer sessions after each presentation.

December 9, 2011
San Diego Marriott Marquis
Marriott Hall
333 West Harbor Drive
San Diego, CA 92101

Register online »

Onyx Pharmaceuticals Submits New Drug Application for Carfilzomib in Relapsed and Refractory Multiple Myeloma
ONYX announced that it has completed the New Drug Application (NDA) submission to the U.S. Food and Drug Administration (FDA) under the accelerated approval process for carfilzomib, a next generation proteasome inhibitor, for the potential treatment of patients with relapsed and refractory multiple myeloma. In addition, Onyx has requested priority review of the application, which reduces the time the FDA takes to review a new drug application. (from Onyx)

Save the Date!! The 5th Annual Comedy Celebration benefiting the Peter Boyle Memorial Fund
Ray Romano hosts Tom Arnold, Dom Irrera, Garry Shandling, Darrell Hammond, Colin Quinn, Fred Willard, and Doris Roberts on Saturday, November 5, 2011 at 6:00pm at the The Wilshire Ebell Theatre & Club in Los Angeles, California

Researchers Use New Tool To Counter Multiple Myeloma Drug Resistance
"Acquired drug resistance" (ADR) is a major problem encountered in treating some forms of cancer. The ability to monitor the proteins involved in drug resistance has been a hurdle facing cancer researchers. However, a team of researchers at Moffitt Cancer Center, and colleagues, are pioneering promising research utilizing a monitoring technology that could provide a better understanding of ADR and assist in clinical decision-making for developing individualized patient treatments for multiple myeloma. (from Newswise)

Apigenin inhibits proliferation and induces apoptosis in human multiple myeloma cells through targeting the trinity of CK2, Cdc37 and Hsp90
Apigenin, a common flavonoid, has been reported to suppress proliferation in a wide variety of solid tumors and hematological cancers; however its mechanism is not well understood and its effect on multiple myeloma cells has not been determined. (from Interactive Web)

MorphoSys Doses First Patient in Phase 1/2a Clinical Trial for MOR202 Program in Multiple Myeloma
MorphoSys AG announced today that the first patient in a Phase 1/2a clinical trial of its cancer antibody MOR202 has been dosed. MOR202 is a fully human HuCAL antibody directed against CD38, a therapeutic target which is highly expressed on multiple myeloma tumor cells and certain leukemias. The phase 1/2a, open-label, multi-centre, dose-escalation study will evaluate the safety and preliminary efficacy of MOR202 in patients with relapsed or refractory multiple myeloma. (from Reuters)

Firefighters responding to 9/11 at increased cancer risk
According to research published in the Lancet medical journal, firefighters exposed to toxic dust and fumes clogging the air after the World Trade Center towers collapsed 10 years ago are more likely to develop cancer. The increase occurred during the first seven years after 9/11. (from CNN)

Novel approach scores first success against elusive cancer gene
Dana-Farber Cancer Institute scientists have successfully disrupted the function of a cancer gene involved in the formation of most human tumors by tampering with the gene's "on" switch and growth signals, rather than targeting the gene itself. The results, achieved in multiple myeloma cells, offer a promising strategy for treating not only myeloma but also many other cancer types driven by the gene MYC, the study authors say. Their findings are being published by the journal Cell on its website Sept. 1 and in its Sept. 16 print edition. (from HealthCanal.com)

Audio posted for the 9/8/11 teleconference: The Importance of Clinical Trial Participation
Listen to Dr. Durie review the ASPIRE trial, a Phase 3 study evaluating carfilzomib in combination with Revlimid and low dose dexamethasone vs. Revdex alone.

Win a Dream Vacation to Costa Rica!
Help the IMF reach its goal of $200,000 for our Research, Education, Support and Advocacy Programs by participating in Myeloma 200 - Closer to a Cure! and be entered into a drawing for a trip for two for 7 days and 6 nights to the beautiful Four Seasons Costa Rica, including airfare and a $400 gift certificate toward spa treatments.



Three Cosponsors for HR 2746, the Cancer Coverage Parity Act of 2011
Representatives Steve Israel (D-NY), Joe Baca (D-CA), and Barney Frank (D-MA) have signed on as cosponsors of HR 2746, the Cancer Coverage Parity Act. HR 2746 requires health insurance coverage of oral anticancer drugs on terms no less favorable than the coverage provided for intravenously (IV) administered anticancer medications.

IMF needs your help to build support for HR 2746 among Members of Congress. To write your U.S. Representative and ask them to co-sponsor HR 2746, click here.

James Zadroga 9/11 Health and Compensation Act
In early January, the James Zadroga 9/11 Health and Compensation Act was signed into law securing health services and financial compensation for first responders who became ill from exposure to dangerous toxins at ground zero.

However, cancer was not included as a covered condition due to lack of medical evidence to prove a higher occurrence of cancer among ground zero workers. Language included in the legislation allows the US World Trade Center Health Program to add cancer as a covered condition as medical evidence is published.
Recent medical evidence was published in The Lancet that showed an increased risk of cancer in firefighters that served at ground zero. Considering this new evidence, we strongly encourage you to push for coverage of cancer for all of the heroes of 9/11.

Please help us by writing to Dr. John Howard, head of the US World Trade Center Health Program TODAY and urge him to add coverage of cancer to the James Zadroga 9/11 Health and Compensation Act!

For more information about the legislation listed above or any other IMF advocacy initiative, contact IMF's Director of Government Relations, Christine Murphy at cmurphy@myeloma.org or 703-738-1498.

Advocates in Action

  • Tennessee – Darlene Jessee, Northeast Tennessee Support Group leader attended a Harley Davidson 9/11 Remembrance Ride on September 13 where Representative Phil Roe was a speaker. She had the opportunity to pull him aside and tell him about HR 2746, the Cancer Coverage Parity Act of 2011. As a physician he seemed interested in learning more. His assistant took Darlene’s phone number to give to Rep. Roe’s Health LA. She did receive a call but unfortunately was not home to answer it. She plans to follow up with his office this week.

  • California – San Diego Support Group leader, Elliot Recht met with Representative Susan Davis earlier this month in a small group from LLS. Rep. Davis is extremely supportive of healthcare issues and was receptive to HR 2746. She agreed with the points Elliot made and took all of the information given to her. The IMF Advocacy team also intends to follow up with her office this week.

  • Washington – Hank Koepfle from Walla Walla, Washington wrote an opinion piece on the importance of cancer research funding that was published in the Walla Walla Union Bulletin. In his letter (dated May 1) he stated his disappointment in the proposed budget cuts to cancer research funding. “Cancer is a national killer and has to be dealt with on a national level,” Hank said. “This is a deadly serious problem and it must be funded in order to find a cure.”

Thank you Darlene, Elliot, and Hank for your initiative and hard work!

Members of Scientific Advisory Board*, Members of International Myeloma Working Group†


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.

  • Monster Miles For a Cause
    Sat, Oct 15, 2011
    The DelMarVa Support Group will walk the "Monster Mile" at the Dover [Delaware]International Speedway for the IMF.

  • Be Bold! Be Bald!
    Fri, Oct 21, 2011
    The campaign reminds people that, while it may feel awkward to wear a bald cap for an entire day, cancer patients often do not have a choice about losing their hair. In their 3rd year, they have raised $5,000 for the programs of the IMF.

  • Steve's Run for Myeloma
    Steve Schecter is planning on running three endurance runs over the next year in honor of his aunt. He is running to raise money to support the IMF's research efforts.
  • Dancing for Lourdes: Dancing for a Cure 
    Lourdes was a single mother of three boys who loved music. So together "Let's dance!" - and not just any dance. Together we will be dancing for a cure!

  • Signs from Heaven
    Signs from Heaven is a loving testament of hope, understanding, and peace—and can help you on your journey of healing. Proceeds from the sale of this book support the programs of the IMF.

  • The 2B Awards
    Are YOU, or someone you know the next Rising Star?? The 2B Awards, an online talent competition, was launched November 11, 2010 and is creating a buzz all over the Internet.

  • Peter Pritchett Friends and Family
    Welcome friends, patients, colleagues and friends of Peter and Susan Pritchett. Many people have asked how Pete is doing and what they can do to help. We have set up this Web site in conjunction with the IMF to reach our goal of raising $50,000 to start a research grant in Pete's name.

  • In Honor of Abby Brown
    TOGETHER, we can conquer this disease! Please support our cause!

  • Bicycle Mojave...and Beyond!!!
    My name is Andy Sninsky, and I am a 3-year survivor of Stage III Multiple Myeloma. I recently biked the Mojave to support the IMF. Join me and my friend, Tom Moinet, as we bike across the Appalachians to Washington, DC and beyond!

  • Gems for Myeloma
    Originally created for IMF staffers by Marya Kazakova, IMF's Publications Editor, this beautiful custom jewelry is now available for sale to raise funds for IMF programs and services.

  • Eye Bead Bracelets from Multiple Colors for Multiple Myeloma
    Looking for the perfect birthday, anniversary or "Just Because You're You" gift? Here are two new items that easily fit the bill. All monies go straight to the IMF.

  • Kindness for a Cure: The Denise Gaeta Bencel Fund
    Let's make the world a bit nicer and help find a cure - a win-win! Spend one month - 30 days - spreading kindness to others. Pay yourself one dollar per day - less than the cost of a cup of coffee. At the end of the thirty days donate the money to the International Myeloma Foundation. Tell us about your personal experiences during this month. Click here to visit the event website for more information and to make your donation.

  • Myeloma Buddies
    These adorable hand-knit dolls are so cute, you will want one for everyone you know.

  • VISIONS Notecards by Jeff; A Cure for Karl
    Jeff Hanson is a 15 year-old, visually impaired artist from Overland Park, Kansas. IMFer Karl Vollstedt and Jeff are great friends who use their time and talents to benefit others. Jeff created these note cards as a gift to Karl and to myeloma research.

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.
Myeloma 200 - Closer to a Cure
Help the IMF reach a goal of $200,000 for our Research, Education, Support and Advocacy Programs in 2011 and win a dream vacation to Costa Rica.
Host an Afternoon Tea

How to Host an Afternoon Tea
An elegant and easy way to build awareness about myeloma and raise money in your community, and the IMF will help.

Shop for the IMF 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!
See more exciting ways to help the IMF continue its important work in education, support and research.


Myeloma Manager
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!

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.

The Voice of the Dolphins
This new book from Hardy Jones, ocean conservationist, filmmaker and myeloma patient, reveals intimate details of dolphins in the wild and the emerging threats to their very existence and ours. He presents persuasive evidence that a lethal threat to dolphins—and, it turns out, to humans—is the rising level of contaminants in the ocean food chain.

Millennium: The Takeda Oncology Company has chosen to artistically represent their commitment to patients through the creation and construction of a monument at their headquarters in Cambridge, MA. This exhibit contains one thousand origami-folded cranes—each crafted from the handwritten personal wishes of cancer patients, employees, physicians, caregivers and advocates. Now you have the opportunity to create a Crane of Hope online, and for every Crane created during the months of March, April and May, Millennium will make a donation to the IMF.

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

Please call the hotline (800) 452-CURE (800-452-2873) or email TheIMF@myeloma.org if you have any questions.
Copyright 2011. International Myeloma Foundation. All Rights Reserved.

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