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Myeloma Minute
May 18, 2008
05.18.08
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

The Nurse Leadership Board of the International Myeloma Foundation Finalizes Guidelines to Help Nurses Manage and Patients Cope with the Side Effects of Therapy
Consensus Statements Will Be Published in the Clinical Journal of Oncology Nursing and Was Presented in Conjunction with the Oncology Nursing Society Annual Meeting May 16th. Nurse Leaders Believe the Improved Support will Increase Patient Compliance (from BusinessWire)

New Clinical Trial Fact Sheet on the "Upfront" Velcade Trial
This is a three-arm, randomized trial for patients who have not been treated for myeloma and who are not candidates for high-dose chemotherapy and stem cell transplant. Patients will be randomly assigned to receive one of three treatments ( VTD, VD, or VMP). Patients will know which therapy they’re receiving.

Don't wait to register for the Seattle Patient & Family Seminar on June 27-28, 2008
There are only so many seats and we are already well over half full. If you have never been to a seminar, and you live in the Pacific Northwest, now is your chance to learn about the latest in myeloma treatment in a room full of your peers. And we don't mean peers as in "jury of your peers." We mean real peers. People who are going through what you are going through. It is a chance not to be missed. Register now!

The National Marrow Donor Program's Office of Patient Advocacy is recruiting volunteers to test a new online financial resource.
The information obtained from the online resource will help patients and families plan for the out-of-pocket costs related to bone marrow, stem cell or cord blood transplant. The NMDP is looking for volunteers throughout the United States to help test the ease of use and overall helpfulness of this new tool.

If you  are a patient, caregiver or family member who may be willing to participate in a 45-minute test session the week of June 2, 2008, please contact:

Leslie Hunter-Larson
Fredrickson Communications
Email: lhunter-larson@fredcomm.com
Phone: (612) 746-1729

Volunteers will be compensated for their time.


Matchmakers: Patients meet clinical trials
Amid Shortage of Volunteers, Some Programs Aim to Boost Education and Recruitment (from the Wall Street Journal by way of WSBT in South Bend)


Outlook Relatively Favorable for Younger Myeloma Patients
Myeloma patients younger than 50 years present with more favorable features and have better survival than older myeloma patients, according to data from a study published in Blood by IMF Scientific Advisor Dr.Heinz Ludwig and The Myeloma Working Group. (from Reuters Health by way of Matria Healthcare)


Blocking of cancer drug called ‘death by finance’
Revlimid was rejected for use by the NHS in Scotland yesterday, because it costs too much. Patient groups and clinicians expressed anger and disappointment after the treatment for multiple myeloma was blocked. (from The Herald)


Lenalidomide raises clot risk in multiple myeloma patients
Thromboembolic events are increased in patients undergoing lenalidomide-based therapy for multiple myeloma, US and Italian researchers report. Aspirin prophylaxis appears to reduce this risk. "The best prophylaxis," says IMF Scientific Advisor Dr. Vincent Rajkumar, "should take into account all the risks and benefits. By using a low dose of steroids, and using aspirin as a preventive measure, the risk of blood clots can be minimized to less than 10%." (from Reuters by way of Cure)

ACE-011 Preclinical Data Published in the Proceedings of the National Academy of Sciences
ACE-011 is a protein therapeutic based on the activin receptor type IIA. The results demonstrate that mice treated with a soluble form of the ActRIIA receptor increases trabecular bone volume by 45%, 120%, 130% and 248% compared to untreated animals 2, 4, 6 and 12 weeks, respectively. (from BusinessWire)



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!


ADVOCACY UPDATE
  • Genetic Information Nondiscrimination Act Headed to the White House
    Genetic information can no longer be used to deny someone health insurance or job opportunities under legislation passed by the US House of Representatives and the Senate in late April 2008.  Representative Louise Slaughter (D-NY) first introduced a genetic nondiscrimination bill 12 years ago. 

    The Genetic Information Nondiscrimination Act makes it illegal for a health plan or insurer to deny coverage or charge higher premiums to a healthy person based solely on a genetic predisposition to a disease. Similarly, an employer could not use genetic information in making hiring, firing or promotion decisions.  The White House, in a statement, expressed support for the legislation. "Concern about unwarranted use of genetic information threatens the utilization of existing genetic tests as well as the ability to conduct further research," it said. 

  • NIH to Receive $400 million in FY 2008
    The Senate Committee on Appropriations included $400 million for the National Institutes of Health (NIH) in the fiscal year (FY) 2008 supplemental
    appropriations bill.  With this increase to NIH, the National Cancer Institute (NCI) would receive an additional $65 million on top of the $4.8 billion already appropriated in FY 2008.  The inclusion of these funds in a supplemental funding bill is extremely rare and illustrates the strength of support that cancer research has in Congress.

    The funds for NIH are being added as part of a larger spending package for key domestic priorities.  The full Senate is expected to consider the bill sometime the week of May 19th.  Because the President is opposed to the domestic spending, it is likely that the bill will be challenged by his supporters in the Senate necessitating a 60 vote majority to pass the Senate.

  • IMF Cosponsors Briefing on Improving Cancer Care
    IMF along with partners in the cancer community cosponsored a briefing on the importance of cancer care plans and cancer treatment summaries in guaranteeing high quality cancer care.  The briefing encouraged Congress to forward HR 1078/S 2790, the “Comprehensive Cancer Care Improvement Act”.  The Comprehensive Cancer Care Improvement Act improves the coordination of all elements of cancer care, including quality cancer treatment and appropriate symptom management.  A core provision of this bill would establish a new Medicare service for cancer care planning which has been identified by the Institute of Medicine as an element of quality cancer care for cancer survivors.

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

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.

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
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
Paris Patient & Family Seminar - Paris, France
October 10, 2008
Rome Patient & Family Seminar - Rome, Italy
October 17, 2008

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:
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
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.
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.

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!
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.

ITEMS OF INTEREST

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.


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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