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Myeloma Minute
April 1, 2010
04.01.10
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

Bone Health Survey for Myeloma Patients and Caregivers - requesting your help
If you are a patient or a caregiver who can answer on behalf of a patient, the International Myeloma Foundation (IMF) is asking your help in completing a survey about Bone Health for Myeloma Patients. This survey is being administered by the International Myeloma Foundation in collaboration with Harris Interactive.   This purpose of the survey is to learn more about how myeloma patients deal with bone health issues.

This survey is being administered by the International Myeloma Foundation in collaboration with Harris Interactive.   Your participation in this study is completely voluntary. We will not gather any personally-identifying information so that survey responses will remain anonymous. If you have questions at any time about the survey or the procedures, please contact the IMF hotline at 818-487-7455, extension 235 or via email at theimf@myeloma.org.

Thank you very much for your time and support. Please start with the survey now by going to http://bonesurvey.myeloma.org


Non-Marrow Tumors Increase Among Myeloma Patients As Survival And Detection Methods Improve
As survival increases among multiple myeloma patients and as detection methods improve, a higher rate of plasma cell tumors are being detected outside the bone marrow of these patients, a new study published in the Annals of Oncology suggests. The authors also concluded that the increase is not caused by high-dose therapy or novel therapeutic agents. (from Myeloma Beacon)

New Guidelines Available based on International Myeloma Working Group Consensus Statements
Simple, capsule summaries, they capture the main points of—but are not intended to replace—the publications from which they came. Recent topics include Guidelines for the Use of Bisphosphonates and Guidelines on Imaging Techniques in the Diagnosis and Monitoring of Multiple Myeloma.

Prof. Joan Bladé to Receive Kyle Award on June 9th in Barcelona
The International Myeloma Foundation (IMF) is proud to award its prestigious Robert A. Kyle Lifetime Achievement Awardfor 2010 to Prof. Joan Bladé. The IMF's Robert A. Kyle Lifetime Achievement Award was established to honor an individual whose lifetime body of work furthers the ultimate goal of finding a cure for myeloma

5th Annual Music Against Myeloma
Please join us on Thursday, April 22nd to help in our fifth annual fight against myeloma. Enjoy special musical performances, drink specials, the best cupcakes in NYC, gift bags and the official "Cancer Sucks" socks. Making a difference never sounded so good. Donate or buy tickets here.

Click here to view pictures from last year's successful event


Gene Holds Key to Embryonic Stem Cell Rejuvenation
Scientists at the U.S. National Institute on Aging who studied mice have discovered the Zscan4 gene that seems to help embryonic stem cells to continuously generate daughter cells. The finding could have implications for research into different areas such as regenerative medicine and aging, according to the study. (from Yahoo News)

The Eighth Annual Cancer Survivorship Series: Living With, Through & Beyond Cancer
This spring, CancerCare, in collaboration with the National Cancer Institute, LIVESTRONG, Intercultural Cancer Council, Living Beyond Breast Cancer and National Coalition for Cancer Survivorship,presents a four-part telephone workshop series. This free series offers cancer survivors, their families, friends and health care professionals practical information to help them cope with concerns and issues that arise after treatment ends.

  • Part I, which takes place on Tuesday, April 13th, is entitled, Trouble Sleeping? Sleep Better to Feel Better: Tips You Can Use.
  • Part II, Communicating with Your Health Care Team After Treatment: Making the Most of Your Visit, will take place on May 18th.
  • Part III, Survivorship and Workplace Transitions, will take place on June 22nd.
  • Part IV, Survivors Too: Communicating With and Among Family, Friends and Loved Ones, will take place on July 13th.

All of the workshops take place from 1:30 to 2:30 pm Eastern Time. These workshops are free – no phone charges apply.  However, pre-registration is required.  To register simply go to the CancerCare website,  www.cancercare.org/connect.


New Support Group In Richmond, Kentucky
Saturday, April 10, 2010 is the first meeting of a new support group serving the Richmond area. After that, they will meet on the 2nd Saturday of each month from 1:00 pm until 3:00 pm at the First Baptist Church, 300 Frances Street (corner of Irvine and Frances), Richmond, KY. The phone at the church is 859-624-2045. Visit the support group section of the IMF website for more information.

Patients with multiple myeloma have less pain, more mobility after vertebroplasty
In study results presented at the Society for Interventional Radiology (SIR) 35th Annual Meeting, patients’ pain from their spinal fractures was significantly reduced following vertebroplasty, resulting in about a 40% reduction in the use of narcotics for pain control. (from Ortho Supersite)

The IMF is going to Memphis...Memphis the hit play on Broadway, that is.
Join the IMF for a Broadway Theater Party including a "Talk-Back" with the cast on Thursday, May 13, 2010 at 8:00 pm at the Shubert Theater. more>>

WHAT'S NEW IN RESEARCH

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.


UPCOMING MEMBER EVENTS

ONGOING MEMBER EVENTS
  • Veterans Against Myeloma
    IMFer Jerry Walton encourages all vets to join Veterans Against Myeloma. "Many MM patients are veterans. Our combined efforts to continue our service through the Veterans Against Myeloma cause can help research and help us win the battle by finding a cure. Hopefully one day together we can say 'Mission Accomplished!'"
  • VISIONS Notecards by Jeff; A Cure for Karl
    Jeff Hanson is a 15 year-old, visually impaired artist from Overland Park, Kansas. IMFer Karl Vollstedt and Jeff are great friends who use their time and talents to benefit others. Jeff created these note cards as a gift to Karl and to myeloma research.
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.
Host an Afternoon Tea

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.

Kids Fight Back!
Kids, need to earn a Citizenship merit badge or fulfill community service requirements? Here’s a great idea about how to do both while you fight back against myeloma. We'll help you put on the best fundraiser ever!
Shop for the IMF 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!
See more exciting ways to help the IMF continue its important work in education, support and research.
ITEMS OF INTEREST

Myeloma Manager
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!


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.


NexProfiler
A tool to help understand the current status of the disease and the questions you should be asking.
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.
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Many thanks to the supporters of The Myeloma Minute:
Celgene Corporation, Millennium: The Takeda Oncology Company, 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 2010. International Myeloma Foundation. All Rights Reserved.

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