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Myeloma Minute - May 1, 2007
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.

Caring for Your Bones When You Have Multiple Myeloma
CancerCare, in association with the IMF, presents a free telephone education workshop with Dr. Kenneth Anderson, on May 10, 2007 from 1:30 - 2:30 PM EASTERN TIME. No phone charges apply.

IMF Satellite Symposium at ONS - a huge success!
The program presented the nurse centric model of care and addressed nursing issues along the continuum of side effects management from prevention to palliation. We've posted the slides from the event on the IMF website for your viewing pleasure.

New Webcast! Myeloma Management - New Trends for 2007
IMF Chairman of the Board, Dr. Brian G.M. Durie, attended the IMF's Support Group Leader's Retreat in Tempe Arizona in April, and gave them this update on what's new in myeloma treatment.

Member Fundraiser Spotlight: The Friends of Richie (FOR) Benefit Story
A series of little decisions. That's how it happened. We raised awareness about multiple myeloma. Raised some money for the cause. Made a whole bunch of music. Hung out with good people. It doesn't get any better.

Celgene Launches New 'Patient Support Coordinator' Program at IMF Support Group Leader Meeting in Phoenix
The coordinators are oncology nurses and other trained professionals available by phone to help patients work their way through the complexities of drug access and reimbursement. The program was developed following a series of meetings where the IMF had the opportunity to raise patient concerns about access to cancer drugs, reimbursement by Medicare and private insurance, co-pay assistance from foundations and free access to drugs for the uninsured. (from PR Newswire)

Millennium Discovers Biomarkers Potentially Predictive of Response to VELCADE® for Injection
Researchers performed genomics analyses on tumor samples from myeloma patients in VELCADE clinical trials. Findings from the analyses showed that patients with an increased expression of genes in the NFk-B and adhesion molecule pathways may be more sensitive to VELCADE therapy. Additionally, these findings showed that the biomarkers did not predict sensitivity to dexamethasone therapy, indicating that the biomarkers may be specific to VELCADE. (from GenomicsProteomics.com)

Route for the IMF's Myeloma Mobile Finalized
The Tuohy family and the Myeloma Mobile will carry their message of life after diagnosis across the country this summer. Check to see if they are going to be stopping near you.

Freelite Honored by Queen Elizabeth II
The Binding Site has won an Innovation Award for the development of the blood test, which helps diagnose and monitor multiple myeloma, a type of bone marrow cancer, and related disorders. (from Therapeutics Daily)

Bortezomib Boosts Response When Myeloma Comes Back
Italian researchers report that myeloma treatment with melphalan, prednisone and thalidomide (MPT) appears to be improved with the addition of the proteasome inhibitor bortezomib. (from CancerPage)

Medicare News

  • Republicans Block Medicare Drug Price Bill
    Senate Republicans blocked legislation that would have allowed the federal government to negotiate Medicare drug prices, denying Democrats a victory on their 2006 election vow to lower prescription costs for senior citizens. (from the Washington Post)

  • New Report Shows Prices for Top Medicare Part D Drugs Grew by 9.2 Percent in Past Year
    Report Shows Part D Drug Prices Grew Almost 4 Times Faster than Inflation as Senate Sustains Filibuster on Bill Allowing Medicare to Bargain for Cheaper Prices (from PharmaLive)

  • Web Site Helps Medicare Drug Plan Enrollees Save Drug Costs
    A new Web site is trying to help seniors with the Medicare prescription drug "doughnut hole." The Part D Optimizer is a drug cost comparison tool to help Part D enrollees find the best prices for drugs. With lower drug costs, enrollees will take longer to reach the coverage gap (or maybe avoid it altogether) and get the most for their money while they are in the gap. (from Elder Law Answers)

Mold by-product kills multiple myeloma
Mayo Clinic Cancer Center researchers have found that chaetocin, a by-product of a common wood mold, has promise as a new anti-myeloma agent. (from Science Daily)

Cytokinetics Announces Non-Clinical Trial Data Presented at 2007 AACR Annual Meeting
The poster presentation entitled, "Kinesin Spindle Protein Inhibition for the Treatment of Multiple Myeloma," demonstrated that KSP inhibition with ispinesib was able to induce growth arrest and apoptosis in myeloma cells, and overcome resistance to both conventional drugs and novel agents, such as bortezomib. (from Cytokinetics)

Millennium invites Support Group Leader to XIth Myeloma Workshop
Millennium Pharmaceuticals announced at the IMF’s annual Support Group Leaders’ Retreat, held in Tempe, Arizona on April 13-15, 2007, that Maddie Hunter, co-leader of the Philadelphia Multiple Myeloma Networking Group, has been invited to the XIth International Myeloma Workshop in Kos, Greece.

Immune response to cancer stem cells may dictate cancer's course
A new study by Rockefeller University scientists shows that MGUS patients who naturally develop an immune response to an embryonic stem cell protein, called SOX2, appear to be protected against the development of myeloma. (from EurekAlert!)

Genes gang up to help cancer spread, study finds
Four genes, including one affected by arthritis drugs, gang up together to help cancer spread throughout the body, researchers found. And a second study found that 87 different genes work to help make cancer more vulnerable to drug treatment. (from Reuters)

A Mutinous Group of Cells on a Greedy, Destructive Path
Biologists know quite a bit about the steps that transform a normal cell into a cancer cell, a cell that lawlessly divides and gives rise to a primary tumor. Researchers' grasp of metastasis, by contrast, remains relatively sketchy. (from the NY Times)

UAMS researchers ID 17 genes that lead to high-risk myeloma
The University of Arkansas for Medical Sciences researchers studied the gene profile of more than 500 patients treated for multiple myeloma at UAMS. Of the about 25,000 genes in the body, the team found the expression of just 17 revealed which form of the disease the patients had. (from Fox 16 in Little Rock)

hether you embrace Mothers' Day as an opportunity to honor your beloved mother, or you resent it as an example of crass commercialism, you know you are probably looking around for something to give her. So, why not do good while you do right by dear old mom. Use the special IMF links to shop at your favorite internet retailers (e-tailers) like Amazon.com, and they will donate a portion of your Mothers' Day purchase to the IMF. You pay no more than you would normally for everything from flowers to candy and jewelry. Whatever you buy, the programs, publications and research supported by the IMF will benefit. Visit our Shop for the IMF page at http://shop.myeloma.org to see the complete list of popular etailers who will donate a portion of your purchase to the IMF.

Hot Off the Presses!
Read the latest issue of the IMF Travel Advantage newsletter. It is full of deals on trips to Ocho Rios, Greenland, Curacao and more. Great prices and you are helping the IMF with every vacation.

by Christine Murphy, MA

FY 2008 Appropriations Process Underway

With Congress back from a short recess, attention now turns to the annual appropriations process. In the next few weeks, the House and Senate Labor-Health and Human Services (Labor-HHS) Appropriations Subcommittees will receive the funding amount that they are authorized to spend on health related programs in fiscal year (FY) 2008. With this overall figure, the Subcommittees begin determining the allocations for individual programs. The IMF recently submitted written testimony to the House and Senate Labor-HHS Appropriations Subcommittees supporting increased funding for the National Institutes of Health (NIH), the National Cancer Institute (NCI), and the Centers for Disease Control and Prevention (CDC).

In FY 2008, IMF advocates the following allocations for cancer programs:

  • National Institutes of Health - $30.869 billion
  • National Cancer Institute - $5.114 billion
  • Geraldine Ferraro Blood Cancer Program at the CDC - $5.5 billion

The National Institutes of Health (NIH) warned appropriators on April 20 they are losing young scientists and cutting back on crucial research efforts and they fear the situation could worsen in the face of a looming budget cut. Senate Labor-HHS Appropriations Subcommittee Chairman Tom Harkin (D-IA) and Ranking Member Arlen Specter (R-PA) plan to use the testimony as ammunition to stave off a $328 million cut President Bush proposed for FY 2008.

Senate Action on Stem Cell Research Bill

The Senate approved the Stem Cell Research Enhancement Act, S. 5, by a vote of 63 to 34 on April 11. All Democrats except Senator Bob Casey (D-PA) and Senator Ben Nelson (D-NE) voted for S. 5 and 16 Republicans voted in support of the bill. The House passed (by a vote of 253 to 174) its companion bill, H.R. 3, during its first "100 Hours." President Bush has vowed to veto this bill, as he vetoed the identical bill in the 109th Congress. Although the legislation enjoys strong House and Senate support, neither Senate nor House vote was a veto-proof vote.

After approving S. 5, the Senate moved to consideration of S. 30, the Hope Offered through Principled and Ethical Stem Cell Research Act, or HOPE Act. This bill would permit research on embryos that are "naturally dead." S. 30 was approved by a vote of 70 to 28. All of the opposing votes were cast by Democrats (including Independents Lieberman and Sanders).

(IMF Scientific Advisors are marked with an *)
  • VELCADE® trials

  • THALOMID® trials

  • REVLIMID® trials

  • DOXIL® trials

  • Phase: preclinical
    Name: ispinesib
    Sponsor: Cytokinetics
    Indication: novel inhibitor of kinesin spindle protein (KSP) induces cell death in MM cells, and overcomes resistance to conventional drugs and novel agents.

    Phase: preclinical
    Name: JS-K (JS-kappa)
    Sponsor: Dana-Farber Cancer Institute
    Indication: prodrug designed to release nitric oxide that shows significant cytotoxicity in both conventional therapy-sensitive and -resistant MM cell lines.

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.

Regional Community Workshop - Munich, Germany
May 16, 2007
Second Anniversary Conference of the AMEN Foundation - Shefayim Kibutz, Israel
May 17, 2007
Minneapolis/Twin Cities Symposium - Minneapolis, Minnesota
May 18, 2007
Regional Community Workshop - Würzburg, Germany
May 19, 2007
Teaneck Patient & Family Seminar - Teaneck, New Jersey
July 27-28, 2007
III Seminário para Pacientes & Familiares IMF - São Paulo, Brasil
05 de agosto
Paris Patient & Family Seminar - Paris, France
September 14, 2007
Rome Patient & Family Seminar - Rome, Italy
September 21, 2007
Barcelona Patient & Family Seminar - Barcelona, Spain
October 22, 2007
Tampa/St. Petersburg Patient & Family Seminar - St. Petersburg, Florida
November 2-3, 2007
Regional Community Workshop - Bergisch Gladbach, Germany
November 17, 2007
Regional Community Workshop - Berlin, Germany
November 19, 2007

The IMF's comprehensive "How-to-FUNdraise" guide is what you need if you're thinking about fundraising in your community but don't know where to start. The guide contains the A - Z of fundraising ideas--like running in a local marathon and asking for donations per mile for myeloma; having a holiday party, where you charge a cover and hold a raffle; asking your local supermarket to donate wine and cheese, then selling tickets and having a cocktail party--as well as tips and guidelines for success. Check out the FUNdraisers below and show your support by donating to their effort online:

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.
The Stratford Runner
Sheldon is running 1000 kilometers across Canada to raise money to support myeloma research.

Carlos' Ride for the Cure
Carlos is riding his bicycle to support the work of the IMF. "I say, 'until there is a cure I ride for the IMF.'"

Molnar Marathon - Louisville, Kentucky
April 28, 2007

8th Annual JC Golf Tournament - Saint Cloud, Minnesota
May 19, 2007

Dr. Scott Lewis' Outrageous Comedy Hypnosis Show -Rancho Mirage, CA
May 20, 2007

Jim's Run for Friends - Traverse City, Michigan
May 26, 2007

6th Annual Multiple Musicians against Multiple Myeloma (MMAMM) - Sea Cliff NY
July 15, 2007

Billy and Devon's Wedding - North Miami Beach, Florida
July 28, 2007

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.
Use the special IMF links to shop at your favorite internet retailers (e-tailers) like Amazon.com, and they will donate a portion of your Mothers' Day purchase to the IMF. You pay no more than you would normally for everything from flowers to candy and jewelry. Whatever you buy, the programs, publications and research supported by the IMF will benefit. Visit our Shop for the IMF page at http://shop.myeloma.org to see the complete list of popular etailers who will donate a portion of your purchase to the IMF. Giving has never been more painless!

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

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.
Imagine Moving Forward is the theme of the IMF's popular myeloma bracelet. At medical conferences and patient & family seminars we see people wearing them in honor, celebration, or in memory of a loved one. They're only $1 each in sets of 10, so order them for everyone you know who has been touched by myeloma. Order them on the web. If you have questions about the bracelets or would like more information, contact Suzanne Battaglia at (800) 452-2873, ext. 227, or SBattaglia@myeloma.org.
See more exciting ways to help the IMF continue its important work in education, support and research.

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 electrónico (enviaremos diez números al año), por favor, envíe su dirección a mensajero@myeloma.org. ¡Gracias!


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Many thanks to the supporters of The Myeloma Minute:
Celgene Corporation, Kyphon, Millennium Pharmaceuticals, Ortho Biotech, 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 2002-2007. International Myeloma Foundation. All Rights Reserved.

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