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Myeloma Minute - October 25, 2007
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.


The IMF sends its most heartfelt thoughts to those who have been affected by the California fires. We know that the fires have disrupted access to health services across a large region, and are here to offer our support. If you are a myeloma patient or family member in an afflicted area, please call us at our toll-free number (800-452-CURE) for assistance in finding alternate medical services where and when possible.

ASCO and ASH say Medicare should drop curbs on Amgen's and J & J's anemia drugs
The American Society of Clinical Oncology and the American Society of Hematology say that Medicare has gone too far in restricting the use of anemia drugs made by Amgen Inc. and Johnson & Johnson and released its own guidelines. The doctors' recommendations add new warnings about heart risks while saying patients can safely use higher doses than Medicare allows. (from the LA Times)

Drug Compendia List Revlimid for Frontline Treatment of Myeloma
Drug compendia DRUGDEX and DrugPoints have listed Revlimid in combination with dexamethasone as an off-label frontline therapy for myeloma. Such a listing not only sets the groundwork for Medicare reimbursement of frontline Revlimid, but may ease the process of reimbursement from other insurers as well.

The Asterisk on Cancer Deaths
There was good news about cancer last week, a report that death rates in the United States have begun falling by 2.1 percent a year, nearly twice the rate of previous declines. But the same report, by the American Cancer Society and other groups, also said certain cancers seem to be becoming more common — not hugely so, but noticeable. Among those increasing in men and women is myeloma. (from the NY Times)

How to Mend a Sick System
Geraldine Ferraro learns firsthand the need for health-care reform. (from Newsweek)

NCCN Updates Multiple Myeloma Guidelines
The National Comprehensive Cancer Network (NCCN), a not-for-profit alliance of 21 cancer centers, now includes Velcade® in combination with Doxil® as a category 1 recommendation for patients with relapsed/refractory multiple myeloma in certain clinical situations. (from NCCN)

Genzyme Gets FDA Approval for Renvela
The approved indication is for use to control serum phosphorus in patients with chronic kidney disease on dialysis.
(from Forbes.com)

Osiris Therapeutics Receives FDA Clearance to Initiate Phase III Pivotal Trial for Prochymal™ as a First Line Treatment for Acute Graft vs. Host Disease
Strong Data from Phase II Trial Supports Remission and Survival Endpoints in Life Threatening Condition (from Yahoo Finance)

FDA Expands VELCADE® Label for Myeloma
The FDA granted approval for VELCADE use, without dose adjustments, in patients with impaired kidney function, including those requiring dialysis. Impaired kidney function is a common complication related to myeloma, affecting approximately 30% of patients at diagnosis and a much larger percentage throughout the course of the disease. (from Millennium)

The National Cancer Institute (NCI), a federal agency that is part of the National Institutes of Health (NIH) and the George Washington School of Public Health, would like to talk to women who are providing care for a family member or friend with cancer. They’d like to learn about your caregiving experience and how you have coped. If you are:

  • Female
  • African American
  • Between the ages of 31 and 80
  • Currently providing care for someone over the age of 20 with cancer, OR you provided care for someone over the age of 20 with cancer at end-of-life within the last year

Call them toll-free at 1-888-249-0029 (Monday to Friday, 9am-5pm EDT)

They will ask you some questions about yourself and your caregiving experience. Participating in this study involves a total of 15-20 minutes by phone. If they qualify, eligible participants may be asked to provide additional information about their caregiving experiences in a follow-up telephone interview that will last approximately 45-60 minutes.

Cheap, Detailed Genetic Testing Soon May Be Ready for Market
Three studies reported in the journal Nature Methods explore inexpensive technologies to decipher and analyze individual patients' DNA by allowing researchers to quickly find the small portions of the human genome that make protein and describe them, while discarding irrelevant data. (from Bloomberg.com)

New Support Group for NE Tennessee
At their first meeting on November 3rd, Robin Tuohy, Regional Director, Support Groups, Northeast, will help them explore the services of the IMF. Click here to go to NE Tennessee's listing on the IMF web site.

Don't Forget! It's not too late to participate in the IMF's Gala, Celebrating Peter Boyle.
Make your reservations today! Martin Short has joined Ray Romano, Doris Roberts, Patricia Heaton and Fred Willard as featured guests at this evening of comedy and music with Peter’s friends and family.


by Christine Murphy

CMS Nixes Proposed Clinical Trials Policy
Earlier this year, the Centers for Medicare and Medicaid Services (CMS) proposed numerous changes to the coverage policy of clinical trials for Medicare beneficiaries.  The proposed onerous and cumbersome changes would have prevented Medicare beneficiaries with cancer from participating in clinical trials.  Due to a concentrated effort by the cancer community and Congressional champions, CMS is making no changes to the current policy regarding Medicare coverage for clinical trials.

Additional Compendia Needed for Medicare
Section 1861(t)(2) of the Social Security Act (in conjunction with sections 1832 and 1861(s)(2)) requires Medicare to cover “medically accepted” uses of drugs and biologicals used in cancer chemotherapy regimens if the uses are supported by citations that are included, or approved for inclusion, in specified compendia. Three compendia were specified in the statute and unfortunately only one of the three compendia is currently published.  The statute did state that CMS “may revise the list of compendia . . . as is appropriate for identifying medically accepted indications for drugs.”  Medicare beneficiaries battling cancer rely in significant part on these compendia listings for coverage of their oncology drugs.  As a current and up-to-date list of compendia is critical to ensure that myeloma patients have access to the most appropriate treatments, IMF has been working to persuade CMS to name additional compendia for the Medicare program.

Senate Action on Biomedical Research
The Senate began debate this week on the Labor, Health and Human Services, and Education (LHHS) Appropriations bill for fiscal year (FY) 2008.   Funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI) is included in the LHHS Appropriations bill.  Currently, the Senate version of this bill includes $29.89 billion (an increase of $1 billion) for the NIH.  IMF along with members of the cancer community support the Senate allocation for FY 2008 as it provides a higher allocation for the NIH than the House.  While the Senate allocation falls below the rate of inflation for biomedical research, it reverses recent negative allocations for NIH.  Final approval of the Senate LHHS Appropriations bill is expected before October 22nd. 

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

  • THALOMID® trials

  • REVLIMID® trials

  • DOXIL® trials

  • Phase II
    Oral LBH589 in adult patients with multiple myeloma who have received at least two prior lines of therapy and whose disease is refractory to the most recent line of therapy.

    Open at Washington University of St. Louis Siteman Cancer Center, Ravi Vij, MD, Principal Investigator. Please contact 314-747-7222, 800-600-3606, or info@ccadmin.wustl.edu for more information.

  • Phase II
    Drug Name: dasatinib (Sprycel™; BMS-354825)
    Sponsor: Bristol-Myers Squibb
    Open at Washington University of St. Louis Siteman Cancer Center, Ravi Vij, P.I.: A Phase II study of dasatinib in the treatment of relapsed or plateau phase multiple myeloma. For more information about this trial, please contact Nick Fisher, Manager of Oncology Clinical Research at Wash U, at 314-454-5102.

  • Phase I
    Thymoglobulin in Patients with Relapsed or Refractory Multiple Myeloma
    Open at Washington University of St. Louis Siteman Cancer Center, Ravi Vij, P.I. A Phase I study of Thymoglobulin. For more information about this trial, please contact Nick Fisher, Manager of Oncology Clinical Research at Wash U, at 314-454-5102.

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.

Calgary Education Day: Living with Myeloma - Calgary, Alberta, Canada
October 26, 2007
Heidelberg Patient & Family Seminar - Heidelberg, Germany
October 26-27, 2007
Tampa/St. Petersburg Patient & Family Seminar - St. Petersburg, Florida
November 2-3, 2007
BC Multiple Myeloma Patient and Family Conference - Vancouver, BC, Canada
November 3, 2007
3rd Annual Southwest Symposium - Tempe, Arizona
November 10, 2007
Düsseldorf Regional Community Workshop - Düsseldorf, Germany
November 17, 2007
Berlin Regional Community Workshop - Berlin, Germany
November 19, 2007
Little Rock Regional Community Workshop - Little Rock, Arkansas
December 1, 2007
American Society of Hematology 49th Annual Meeting and Exposition - Atlanta, Georgia
December 8-11, 2007
St. Louis Regional Community Workshop - St. Louis, Missouri
December 15, 2007
Atlanta (Buckhead) Patient & Family Seminar - Atlanta, Georgia
February 15-16, 2008

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:
2nd Annual Money for Miracles - West Warwick, Rhode Island
October 27, 2007

Eric’s Run for His Aunt Linda - Arlington, Virginia
October 28, 2007
Evening 4 A Cure - Lancaster, New York
November 2, 2007
2nd Memorial Augusto Mario Schirinzi - IMF Golf Tournament - Florence, Italy
November 11, 2007

Multiple Myeloma Night with the Philadelphia Phantoms - Philadelphia, Pennsylvania
December 14, 2007

An Evening of Believing - Lewisville, Texas
February 23, 2008
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.
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.
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.'"
Miles for Myeloma
Larry Bartolin is a six-year survivor of multiple myeloma, and is riding his motorcycle to raise funds and public awareness.
Losing Weight to Gain Awareness
Debi Pleitner is losing weight to raise money for research and the awareness programs of 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.
European Holiday Markets
Each town you visit is like a gift just waiting to be unwrapped. Fragrances of roasted chestnuts, strudel, sugar-coated baked apples, and hot mulled wine at the Christmas Markets will tantalize your senses.

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.
Difford Bracelets Multiple Myeloma Awareness Bracelets
Beautiful custom made jewelry to honor those who have joined the struggle against multiple myeloma.

Caregiver Daily Journal

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.

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.

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 Missy Klepetar at (800) 452-2873, ext. 227, or mklepetar@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!


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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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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