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Myeloma Minute
May 24, 2011
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.


May 3-6, 2011, Paris played host to over 2000 myeloma specialists from all over the world. It was the 13th International Myeloma Workshop (IMW), held every two years to highlight emerging advances in our understanding of the biology and treatment of myeloma. The IMF was there to film it, and we have been postting the sessions and will have everything up in the next few days. Please check back often as we add webcasts every day. Why not start with the Session Summaries?

While you're at it, check out Jack Aiello's blog from the IMW, "A Patient in Paris." He blogged about the meeting from a patient's perspective, and made some very complex presentations understandable.

If you are a researcher applying for an IMF Brian D. Novis Research Grant
Remember that the application deadline date has changed. Current year applications must be submitted by August 1, 2011.

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.

Study says long-term maintenance Treatment demonstrated 90% Overall Survival Rate
New data demonstrate that REVLIMID® maintenance therapy following stem cell (bone marrow) transplant delays time to disease progression and improves overall survival.

MicroRNA expression in multiple myeloma is associated with genetic subtype, isotype and survival
Researchers identified aberrantly expressed microRNAs associated with the diagnosis, pathogenesis and prognosis of MM, data which will prove an invaluable resource for understanding the role of microRNAs in myeloma. (from 7th Space Interactive)

Circulating osteopontin: a dual marker of bone destruction and angiogenesis in patients with multiple myeloma
The matrix protein osteopontin has been shown to be a marker of osteoclastic activity in multiple myeloma patients, as well as a regulator of angiogenesis. (from 7th Space Interactive)

Subcutaneous VELCADE® in the News

Bone Marrow Biopsy Quicker, Less Painful With Rotary Device
Use of a new rotary-powered device translates into shorter procedure time, larger core specimens, and less residual pain for patients. (from Medscape)

Osteonecrosis of the Jaw. What is it? Why should myeloma patients know about it?
Watch the latest webcast here as Salvatore L. Ruggiero, DMD, MD talks About Osteonecrosis of the Jaw (ONJ).

DHCP communication on the potential risk of second primary malignancies in patients treated with Revlimid (lenalidomide)
An increased incidence of second primary malignancies in patients treated with lenalidomide compared to controls has been observed in three clinical studies involving the use of Revlimid with mephalan. The US Food and Drug Administration has initiated a safety review to further evaluate this finding.

IMF Helps with Big Win for Cancer Patients in New Mexico: Advocate's moving testimony helps with passage of Oral Drug Parity Bill
Signed into law April 4, Bill SB 385, introduced by Senator Timothy Jennings, ends the disparity in insurance coverage for oral cancer drugs as compared to IV drug therapies, and represents a tremendous victory for the myeloma community and all cancer patients in New Mexico.

Check out the latest IMF blogs:

9/11 firefighters ARE getting cancer at a faster rate than others, chief medical officer reveals
A seven-year study by the New York Fire Department has claimed that there are 'unusual rises' in the number of cancer cases among firefighters who worked in the aftermath of 9/11. It is thought that the report - due to be officially disclosed in time for the 10th anniversary of the terror attacks in September - cites unusual rises in leukemia, non-Hodgkin's lymphoma and multiple myeloma. (from NY Post by way of firehouse.com)

Onyx Pharmaceuticals Announces Plans to Amend Phase 3 FOCUS Study for European Registration
Onyx Pharmaceuticals, Inc. today announced its plans to expand the Phase 3 European clinical trial FOCUS, which is evaluating the efficacy and tolerability of carfilzomib, a selective next-generation proteasome inhibitor. The FOCUS trial is designed to support the registrational filing with the European Medicines Agency in patients with relapsed and refractory myeloma.  (from PR Newswire)

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.

IMF to Participate in One Voice Against Cancer (OVAC) Lobby Day 2011
OVAC is a collaboration of national non-profit organizations representing millions of Americans. Together these organizations deliver a unified message to Congress and the White House on the need for increased cancer-related appropriations. The IMF is an active member of OVAC and will participate in their annual Lobby Day, where representatives of the member organizations come to Washington, DC to meet with legislators to share the human face of cancer in America.

Read the account of IMF Advocates JoAnne Gunther and her grandson Billy at OVAC Lobby Day 2010.

Thinking about starting a support group? The IMF Support Group Team is here to help!
Through a network of over 100 myeloma support groups, the IMF seeks to ensure that patients and families have local access to support and information. Among their many benefits, support groups can increase knowledge, decrease anxiety and create a sense of community.The IMF can offer you tips to get started and logistics to consider when starting up a myeloma specific support group.

  • “A Day at the Capitol” – Wisconsin Lobby Day
    On April 27, 2011, Tom Chelius, Sue Enright (West Bend Area Myeloma Support Group Leader), Dick Skalitzky and his daughter Shauna Skalitzky along with many others participated in the Wisconsin Coalition for Cancer Treatment Access (WCCTA) “A Day at the Capitol.” The lobby day took place in Madison where constituents from all over Wisconsin gathered to show support for the Oral Chemotherapy Access bill.

  • Advocates in Action
    Read about advocates in Wisconsin who held a Day at the Capitol to ask for co-sponsorship of the oral chemotherapy access bill;
    April Adovcate of the month David Cowan who was recently interviewed by his local radio station to discuss his testimony in favor of SB 385, the oral chemotherapy access bill in New Mexico; the unveiling of the draft Fiscal Year (FY) 2012 Spending Bills; and the U.S. Supreme Court response to Virginia Attorney General Kenneth Cuccinelli's request that the high court immediately take up a challenge to the health care law and bypass the appeals courts.

  • Are You a Member of the Myeloma Action Network?
    Want to stay informed about IMF’s advocacy activities? All you need to do is to join the Myeloma Action Network at www.advocacy.myeloma.org and you will automatically receive e-mail advocacy alerts from the IMF. To learn more about health care reform and other important advocacy issues that impact the myeloma community, please visit the IMF advocacy page at www.myeloma.org. 

    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.

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.

    Our own Ally Tuohy (Myeloma Mobile) and Rebecca Norton's Senior Project to benefit the IMF. It is a free concert, but donations are gladly accepted.
    June 3, 2011
    Beacon Falls, Connecticut

  • 4th Annual Carolyn Czerkies Memorial Golf Outing
    Over the past three years, with the generous donations from all the participants, sponsors, and volunteers, our event has raised over $45,000. In fact, last year's event (130 golfers), was one of the nation's biggest charity golf outings to benefit the IMF. For more information and to make a donation, click here to visit the event site.

  • 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!
  • 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.
  • 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.
  • Veterans Against Myeloma
    IMFer Jerry Walton encourages all vets to join Veterans Against Myeloma. "Many MM patients are veterans. Our combined efforts to continue our service through the Veterans Against Myeloma cause can help research and help us win the battle by finding a cure. Hopefully one day together we can say 'Mission Accomplished!'"
  • 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.

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