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Myeloma Minute
June 29, 2010
06.29.10
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

Inaugural Summit of the International Myeloma Working Group Lays the Groundwork for a Course Toward a Cure
Data at June Cancer Meetings Builds Support for Continuous Myeloma Treatment to Extend Remissions

IMF Honored in May Congressional Record
Hon. Brian Higgins (NY) honored the International Myeloma Foundation in the May Congressional Record while garnering attention for the disparity in coverage between oral and intravenous chemotherapy with the introduction of his bill, HR 2366, The Cancer Drug Coverage Parity Act of 2009.


Webcasts from ASCO 2010
We have finished posting the interviews with physicians presenting at the American Society of Clinical Oncology (ASCO) Annual Meeting, June 4-8 in Chicago, Illinois. Studies on the newest drugs and combinations, maintenance therapy after transplant and much more. We bring the experts to you.


Question for the Hotline? Use new Click to Talk!
Click to Talk is an exciting new service that puts you in touch with our Hotline more easily. Just click the icon that appears in the upper right hand corner on every page, enter your phone number, and you will receive a call from our office that will connect you to the Hotline. If you call after hours, you can set up a specific time and number for a callback.


Patient Advocate Foundation Announces New Patient Hotline
Patient Advocate Foundation (PAF) is pleased to announce that it has launched a new program, the CINV (Chemotherapy-Induced Nausea and Vomiting) CareLine. The CareLine is a toll-free hotline, 877-614-9242, designed to provide individualized case management assistance to patients diagnosed with cancer and experiencing chemotherapy-induced nausea and vomiting.

Money Worries Keep Cancer Survivors From Getting Care
Many cancer survivors skipped some kind of health care because of costs, a new study finds. Surveys of thousands of patients showed that 18 percent of cancer survivors were forgoing care ranging from dental and mental health care to filling prescriptions.


Are you (or one of your patients' family members) a spouse or partner of a person who underwent a bone marrow, stem cell or cord blood transplant within the past two years?
If so, researchers at Eastern Michigan University would like to learn from you. They're conducting a study to determine which factors increase and decrease stress for spousal/partner caregivers during the first two years after transplant.


Genetic Variations Influence Patient Response to Treatment for Multiple Myeloma: Presented at EHA
The response to standard therapeutics used for the treatment of patients with multiple myeloma is tempered by genetic variations in drug metabolism, inflammatory response, and DNA repair, researchers said here at the 15th Congress of the European Hematology Association (EHA). (from DG News)

Lenalidomide-Based Triple Therapy Prolongs Progression-Free Survival in Elders With Multiple Myeloma: Presented at EHA
Patients aged 65 years and older with newly diagnosed multiple myeloma (MM) experienced a rapid and greater response that resulted in increased progression-free survival with continuous lenalidomide therapy following melphalan and prednisone compared with melphalan plus prednisone alone. (from DG News)

WHAT'S NEW IN RESEARCH
Members of Scientific Advisory Board*, Members of International Myeloma Working Group†

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
  • Kindness for a Cure: The Denise Gaeta Bencel Fund
    Let's make the world a bit nicer and help find a cure - a win-win! Spend one month - 30 days - spreading kindness to others. Pay yourself one dollar per day - less than the cost of a cup of coffee. At the end of the thirty days donate the money to the International Myeloma Foundation. Tell us about your personal experiences during this month. Click here to visit the event website for more information and to make your donation.
  • 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.

How to Host an Afternoon Tea
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 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


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!


The IMF’s Living Well with Myeloma quarterly teleconference series continues on August 5th with Nutrition.
Speaker is Loch S. Chandler, N.D., M.S.O.M., L.Ac., from Providence Integrative Medicine Clinic, Portland, Oregon.

The Eighth Annual Cancer Survivorship Series: Living With, Through & Beyond Cancer
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 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.


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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Official Newsletter of the IMF!
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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