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Myeloma Minute
August 25, 2008
08.25.08
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.


WHAT'S NEWS

IMF Scientific Advisors to Receive Prestigious Awards From the American Society of Hematology
(from the American Society of Hematology)

  • Scientific Advisory Board Chair Robert Kyle, MD, of the Mayo Clinic in Rochester, MN, will be presented with the Wallace H. Coulter Award for Lifetime Achievement in Hematology, which was established in 2007 to honor individuals who have made a lifelong commitment to the specialty and whose contributions have had a major impact on education, research, and/or practice. Dr. Kyle will receive the award for his contributions to the study of multiple myeloma, monoclonal gammopathies, amyloidosis, and related plasma-cell disorders.

  • Scientific Advisor Kenneth Anderson, MD, of the Dana-Farber Cancer Institute in Boston, MA, will be presented with the William Dameshek Prize, awarded to an individual who has made a recent outstanding contribution to the field. Dr. Anderson will be recognized for his contributions to the treatment of myeloma.

NLB Members Create Myeloma Treatment Guidelines
Anyone who has treated patients for multiple myeloma with the novel drugs lenalidomide, thalidomide, or bortezomib, knows how important early recognition of side effects can be. With prompt treatment most side effects can be effectively managed. Twenty nurses from around the country became the driving force to tackle this issue. (Nursing Spectrum article from Nurse.com)

Download PDFs of the Patient Education Sheets from the Myeloma Treatment Guidelines for your use.


On Friday, September 5, 2008, at 8 PM
WE’RE THROWING A NATIONWIDE PARTY
..and you can be a featured host!



New hope for bone marrow patients
Edinburgh experts used blood stem cells from mice to mimic how humans produce the stem cells and found they were able to multiply them by 150 times. (from BBC News)


How to Host an Afternoon Tea

Here’s an elegant and easy way to build awareness about myeloma and raise money in your community, and the IMF will help.


MEDICARE NEWS


Boyle Event
The IMF's 2nd Annual Comedy Celebration Benefiting the Peter Boyle Memorial Fund

November 15, 2008

You won't want to miss this night of a thousand laughs hosted by Ray Romano, and featuring Jeff Garlin, Patricia Heaton, Doris Roberts, Fred Willard and Robert Klein.


How Molecules Out Of Balance Lead To Human Multiple Myeloma And Other Cancers
An international team of scientists has identified processes that are heavily implicated in human multiple myeloma and other B cell cancers, moving us closer to developing quick tests and readouts that could help in the tailored treatment of patients. (from ScienceDaily)

Proteolix Initiates Phase 1b Clinical Trial of Carfilzomib in a Combination Regimen for Patients With Relapsed Multiple Myeloma
The Phase 1b clinical trial is designed to evaluate safety and to establish a maximum-tolerated dose of carfilzomib in combination with lenalidomide and dexamethasone on a twenty-eight day treatment cycle. (from Genetic Engineering & Biotechnology News)

AmEx
New opportunity for American Express Cardholders to support IMF
Are you an American Express ® Cardmember? Do you collect Membership Rewards points? If so, you will be interested to learn that you can redeem your Membership Rewards points to help the IMF.


WHAT'S NEW IN RESEARCH
ARTICLES
(IMF Scientific Advisors are marked with an *)

  • A freeway to stem cells?
    Alois Gratwohl, and Aleksandra Wodnar-Filipowicz
    Blood, 15 August 2008, Vol. 112, No. 4, pp. 923-924.
    A comment on Devine et al, listed above.
  • Cyproheptadine displays preclinical activity in myeloma and leukemia
    Xinliang Mao, Sheng-ben Liang, Rose Hurren, Marcela Gronda, Sue Chow, G. Wei Xu, Xiaoming Wang, Reza Beheshti Zavareh, Nazir Jamal, Hans Messner, David W. Hedley, Alessandro Datti, Jeff L. Wrana, Yuanxiao Zhu, Chang-xin Shi, Kyle Lee, Rodger Tiedemann, Suzanne Trudel, A. Keith Stewart*, and Aaron D. Schimmer
    Blood 2008;112 760-769
  • Familial Myeloma
    Henry T. Lynch, M.D., Kelly Ferrara, M.S., Bart Barlogie, M.D., Ph.D*., Elizabeth A. Coleman, Ph.D., Jane F. Lynch, B.S.N., Dennis Weisenburger, M.D., Warren Sanger, Ph.D., Patrice Watson, Ph.D., Henry Nipper, Ph.D., Vinetta Witt, Ph.D., and Stephan Thomé, M.D.
    N Engl J Med. 2008 Jul 10;359(2):152-7.

CLINICAL TRIALS

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.

UPCOMING SEMINARS AND CLINICAL CONFERENCES
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.

Berlin Regional Community Workshop - Berlin, Germany
September 2, 2008
Patient Day - Podebrady, Czech Republic
September 6, 2008
2nd Annual Hawaii Regional Community Workshop - Honolulu, Hawaii
September 12, 2008
Myeloma Canada: Patient, Family & Healthcare Professionals Conference - Toronto, Canada
September 12-13, 2008
5th International Symposium on Clinical Applications of Serum Free Light Chain Analysis - Bath, United Kingdom
September 18-19, 2008
BMT InfoNet's "Celebrating a Second Chance at Life" - Dallas, Texas
September 20-21, 2008
Minneapolis/Twin Cities Regional Community Workshop - St. Louis Park, Minnesota
September 27, 2008
The Multiple Myeloma Conference - Pewaukee, Wisconsin
October 4, 2008
Paris Patient & Family Seminar - Paris, France
October 10, 2008
2nd Annual Greater Kansas City Area Regional Community Workshop - Kansas City, Missouri
October 11, 2008
Rome Patient & Family Seminar - Rome, Italy
October 17, 2008
East Texas Regional Community Workshop - Longview, Texas
October 18, 2008
4th Annual Southwest Symposium - Tempe, Arizona
November 22, 2008
San Francisco Patient & Family Seminar - San Francisco, California
April 17-18, 2009

UPCOMING EVENTS
SpringHot Time in the Summertime!
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:
Stand Up to Cancer - Nationwide
September 5, 2008
Traveling the World in Search of a Cure - Jenkintown, Pennsylvania
September 26, 2008
Susan Young's Yard Sale in honor of Douglas Farrell - Ridge, New York
September 27, 2008
5th Annual Peggyann Pytlik Walk of HOPE for a CURE of MYELOMA in Honor of Joe "Duffer" Dutton - Niagara Falls, New York
September 28, 2008
10th Annual Evening 4 A Cure - Lancaster, New York
November 1, 2008
The IMF's 2nd Annual Comedy Celebration Benefiting the Peter Boyle Memorial Fund - Los Angeles, CA
November 15, 2008
ONGOING EVENTS
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.

HELP 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.
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!
Five Nights In Tahiti! Can't go wrong in a sarong!
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.

ITEMS OF INTEREST


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!


Have you had a bone marrow transplant, stem cell transplant, or cord blood transplant?
Researchers at the Mount Sinai School of Medicine are looking for people who:

  • Had a transplant between 9 months and 2 years ago
  • Are living with their disease or free of disease after a successful transplant
  • Are at least 18 years old (and 16 or older at the time of transplant)
  • Speak English
  • Have telephone service

If you answered yes to each of these questions, you may be eligible to join a study that will test a program designed to help people experiencing problems and concerns reported by some people who have undergone hematopoietic stem cell transplant for treatment of cancer and related diseases.

To determine whether you are eligible to join the study, you will be asked to complete a 20 minute telephone screening interview that includes questions about your background and your thoughts and feelings about your illness and transplant.

If you are found to be eligible and if you decide to join the study, you will complete study procedures from your home, directed by a study staff member. The study includes two telephone interviews, spaced over about 4 months. One will take about 45 minutes and the other will take about 60 minutes. Between the two interviews you will be asked to complete four 30-minute study sessions that involve writing about various topics. You will be compensated for your time and effort.

To hear more about this study, contact Christine Rini at (212) 659-5555 or Lisa Wu at (212) 659-5586.
You can also email us: christine.rini@mssm.edu or lisa.wu@mssm.edu.

This study is being conducted at Mount Sinai School of Medicine and is funded by the American Cancer Society. It has been approved by the Mount Sinai Institutional Review Board (GCO# 06-0391 approved through 9/17/08)


Multiple Myeloma: Determining Prognosis and Choosing Therapy
Medscape online CME featuring IMF Scientific Advisor Seema Singhal, MD,


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!


BANK ON A CURE®

International Staging System

NexProfiler
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.

Tell A Friend...
The Myeloma Minute is a great way to stay abreast of the latest developments within the myeloma community. We hope you'll share this information with friends, family members and physicians and encourage them to sign up for their own copy by forwarding this message. New users can register by clicking here.

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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