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Myeloma Minute
May 8, 2008
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.

Dear Myeloma Minute Readers:

Due to an unfortunate error on our part, the Clinical Trials section of the most recent Myeloma Minute was incomplete. We are in the process of redesigning our website and certain critical links were deleted.  At the IMF, the importance of Clinical Trials cannot be understated, as these studies bring new hope to myeloma patients around the world.

Therefore, we are resending you this week’s Minute. Please note that clicking on Clinical Trials will direct you to the extensive information available on the IMF website.

Again, we apologize to our sponsors and our readers for this error.

Best regards,
David Smith
Executive Director
International Myeloma Foundation


Consensus on Care: New Insights on Novel Therapies in Multiple Myeloma
May 16, 2008
If you are a nurse attending ONS this year, make sure you have registered for the Nurse Leadership Board's Sunrise Symposium. Enjoy breakfast and key consensus recommendations for improving patient care.

It's almost Mother's Day. Time to thank Mom for all the science projects she finished, all the babysitting, all the unasked-for advice that turned out to be right.
Shopping for something special for Mother's Day? You can support the quality programs of the IMF with every dollar you spend. Just visit shop.myeloma.org and use the links to connect to your favorite store. Send tulips from 1-800-Flowers or bulbs to grow her own tulips from amazon.com or lipstick to put on her two lips from drugstore.com. And if you are the Mom, what better gift than to help the IMF.

Congress has been pressuring the FDA to improve operations, strengthen inspections and hire more experts. The agency is charged with the responsibility of protecting the public and comes under attack whenever a drug safety controversy erupts. Yet agency staffers are pushed to the limit with pay levels lower and workloads higher than either private or academic settings--a climate that contributes to a turnover rate in key scientific areas that is twice as high as other government agencies.

  • Trying Times at the FDA — The Challenge of Ensuring the Safety of Imported Pharmaceuticals
    In recent years, the Food and Drug Administration (FDA) has faced serious challenges to its ability to ensure the safety of the country's medical devices and drugs. In response, Congress and the Institute of Medicine have called on the FDA to prioritize safety monitoring. (Perspective from the New England Journal of Medicine)

  • Playing "Kick the FDA" — Risk-free to Players but Hazardous to Public Health
    The Food and Drug Administration (FDA) is responsible for regulating $1 trillion worth of consumer products, or 25% of the U.S. consumer economy — the food we eat, the cosmetics we use, the medical devices implanted in our bodies or used in our care, and the drugs we take. It is of grave concern when an agency with such pervasive effects on our lives loses the public's confidence.(Perspective from the New England Journal of Medicine)

  • FDA to take on 1,300 more scientists
    The hiring effort comes as the agency is under growing pressure from Congress to improve operations and existing staff is stretched thin. (from Reuters)

  • FDA soon may support biomarker tests
    The Food and Drug Administration is poised to throw its support behind a powerful new method of predicting the safety of experimental drugs, a step that could help pharmaceutical companies bring treatments to market more quickly - and reduce patients' risk. (from the San Francisco Chronicle)

Smoking Cessation, Diet, and Exercise May Influence Survival in Cancer Survivors
Although more research is needed, especially randomized controlled trials, lifestyle factors and health habits might influence survival and cancer risk among cancer survivors. (from Medscape)

Cancer patients try untested drugs in Britain
With the opening of a government-run network of experimental cancer clinics across the country this month, British doctors are hoping to offer millions of terminal cancer patients the opportunity to try untested drugs. In the United States, cancer patients can also sign up for experimental treatment, but there is no official national effort to help patients enroll. (from the Associated Press by way of the Washington Post)

States That Require Health Plans to Cover Patient Care Costs in Clinical Trials
A growing number of states have passed legislation or instituted special agreements requiring health plans to pay the cost of routine medical care you receive as a participant in a clinical trial. Just follow this link, and click on your state to get an overiview of its law or agreement and its key provisions. (from the National Cancer Institute)

Proteolix Initiates Phase 2 Clinical Trial of Carfilzomib in Patients With Relapsed Solid Tumors
Patient dosing has commenced in a Phase 2 clinical trial of carfilzomib (PR-171), a selective blocker of proteasome activity, in relapsed solid tumors. A Phase 1b dose-escalation trial of carfilzomib in patients with advanced solid tumors has recently been completed. (from The Earth Times)

Amgen counting on Denosumab to turn around its fortunes
Clinical trials have demonstrated that the therapy can build bone density. While the standard current treatments for bone loss, bisphosphonates, work by targeting mature osteoclasts on the surface of the bone, Denosumab can inhibit osteoclasts at all stages of their development.

Cash before Chemo: Hospitals get tough
Some hospitals are adopting a policy that makes medical care contingent on upfront payments. Typically, hospitals have billed people after they receive care. But now, pointing to their burgeoning bad-debt and charity-care costs, hospitals are asking patients for money before they get treated. (from the Wall Street Journal by way of WSBT in South Bend)

Deadly exposure: Plutonium-related cancers plague children of the Manhattan Project
A woman whose father lived in Los Alamos as a child and died at age 63 of myeloma, a cancer associated with plutonium, has filed a lawsuit against the University of California and other managers of the nuclear weapons lab in the 1940s and 1950s. (from the Santa Fe New Mexican)

Vietnam Vets Need to Know: Agent Orange effects can come 30 years or more after exposure; benefits available
In 2000, three decades after serving in Vietnam, Minnesota veteran Jim Fiebke, then 52, was diagnosed with multiple myeloma.  A chance encounter in a parking lot led him to the VA where he learned he qualified for funds allocated for Vietnam veterans for diseases considered "presumptive" for Agent Orange exposure. (from OpEdNews)

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!

(IMF Scientific Advisors are marked with an *)


  • Preclinical Trial of IPI-926 (cyclopamine; Hedgehog Pathway inhibitor)
    Sponsor: Infinity Pharmaceuticals
    Indication: orally available derivative of cyclopamine inhibits the Hedgehog Pathway (which takes its name from an intercellular signaling molecule).  Hedgehog pathway plays an important role in cancer stem cells.

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.

Multiple Myeloma: On the Crossroad of Science and Medicine - Rehovot, Israel
May 21, 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

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:
2nd Annual Help from Heaven: 5k Benefit Walk for Multiple Myeloma - Winona Minnesota,
May 10, 2008
9th Annual "JC" Golf Tournament - St. Cloud, Minnesota
May 17, 2008
III Augusto Mario Schirinzi Memorial Golf Tournament - Florence, Italy
June 21, 2008
IMF Charity Golf Outing - Yorkville, Illinois
July 12, 2008
7th Annual Multiple Musicians against Multiple Myeloma (MMAMM) - Sea Cliff, New York
July 13, 2008
Carolyn Czerkies Charity Golf Outing - Yorkville, Illinois
July 19, 2008
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.

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!
7 Days in Italy? Meraviglioso!
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 this 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.


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!


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.

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, Millennium Pharmaceuticals 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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