We are international

Myeloma Minute - November 11, 2006

New IMF Nursing Leadership Board Meets to Develop Recommendations for Care
The Nursing Leadership Board (NLB) is an exciting new initiative of the International Myeloma Foundation. Their first meeting took place November 4th - 5th, in Dallas, Texas. The scope of this project is to develop broad recommendations for nursing care for myeloma patients, and at the initial NLB Retreat the focus was on Novel therapies.

Innovative Strategies for Treating Myeloma: Case Discussions
Don't miss this
Friday Night Satellite Symposium being held on December 8, 2006 in conjunction with the American Society of Hematology 48th Annual Meeting and Exposition. Structured with a point and counter-point discussion, the session provides a forum for discussion on the latest treatment options for patients with multiple myeloma.

by Christine K. Murphy, MA

At the writing of this article, there were still 10 races in the House of Representatives yet to be determined. For the first time in 12 years, the House and the Senate converted to Democratic control. In the 110th Congress, the composition of the House will be 229 Democrats and 196 Republicans. The Senate will consist of 49 Republicans, 49 Democrats, and 2 Independents in the 110th Congress. Both Independents in the Senate caucus with the Democrats to give them the majority.

Members of Congress return to Washington in mid-November to complete the work of the 109th Congress. With the change in power in Congress, there could be power struggles during the lame duck session and likely will result in little legislating beyond the remaining fiscal year (FY) 2007 funding bills.

Republican leaders either will attempt to advance their most important priorities before ceding control of the House and Senate or be anxious to pass only the most pressing funding bills before adjournment. Knowing that they will have more influence in the 110th Congress, Democrats may be less inclined to negotiate and will have greater incentive to use stalling tactics in the hopes of preventing Republicans from accomplishing their goals.

The short timetable of the lame duck session provides Congress limited time to complete the remaining nine of the 11 regular FY 2007 appropriations bills, including the Labor, Health and Human Services, and Education (LHHS) Appropriations bill which funds the National Institutes of Health (NIH), the National Cancer Institute (NCI), and the Centers for Disease Control and Prevention (CDC). The result could be funding for the federal government at FY 2006 levels in an omnibus bill or in a continuing resolution (CR) that lasts until the beginning of the 110th Congress. Should Congress pass a CR, Members would need to resume consideration of the spending bills at the beginning of the 110th Congress.

FDA May Broaden Access To Experimental Drugs
The Food and Drug Administration is moving to broaden access to experimental drugs for people with serious illnesses, with efforts that would represent a middle ground in the emotional debate over when unproven treatments should be available to patients with no other options. (from National Center for Policy Analysis)


  • Medicare Drug Benefit Helps Most Enrollees Save, Poll Finds
    Most seniors who are enrolled in a Medicare drug plan are satisfied with their plan and expect to stay with it next year, according to a new Wall Street Journal Online/Harris Interactive health-care poll. 70% say the plan has saved them money on prescription drugs, compared with 20% who say it hasn't. The plan has been easy to use, say 82% of respondents vs. 13% who disagree. (from the Wall Street Journal)

  • Q&A on Medicare Part D
    If I'm satisfied with my drug plan, should I do anything this fall? I fell into the coverage gap this year. How can I prevent that in 2007? How much are premiums going up in 2007? (from the Buffalo News)

Health authorities approve Enzon protein application
The FDA has completed its review of Enzon's investigational new drug application for recombinant human Mannose-Binding Lectin for the treatment of severe infections in patients who are undergoing liver transplant. The FDA previously approved an investigational new drug application for recombinant human Mannose-Binding Lectin (rhMBL) for the prevention and treatment of severe infections in patients with multiple myeloma. (from Pharmaceutical Business Review)

Medarex and PacMab Announce Therapeutic Antibody Co-Development Agreement
The companies have entered into a collaborative agreement to develop novel monoclonal antibody-based therapies for blood cancers. PacMab Chief Executive Officer, Alan Liddle said, "Initially we will focus on the most prevalent form of multiple myeloma, a serious blood cancer." (from PRNewswire)

Will the Election Help Lower Drug Prices?
One of the top priorities of the new Democratic House will be to lower prescription drug prices. (from ABC 7 News in San Francisco)

Cleveland Clinic names top 10 medical innovations
Cleveland Clinic's list of the medical innovations expected to impact health care next year include therapies for heart failure, cancer, asthma, vascular disease and age-related macular degeneration. (from Cleveland Clinic)

Vaccine-producing 'Plant-factories'
Spanish scientists have identified a new route for protein transport in plant cells, a development that could aid the design of protein-manufacturing plants. Some of the glycosylated recombinant proteins involved in the traffic are of great interest to drug developers. (from Science Daily)

Home for the Holidays and for the Cure
Many of us travel over the holidays. If you are planning a trip now or at any time during the year, use www.myelomatravel.com to get great rates and fund the IMF's programs simply by booking your travel! And in a couple of weeks we will begin including a special link in the Minute that will showcase some special travel deals for IMFers. Stay tuned.

Send your best wishes this holiday season...
with these charming cards designed by junior IMFers. As you spread good cheer, you help support the IMF's programs.

Don't forget that the IMF is Part of the Combined Federal Campaign (CFC)
Pledges made by Federal civilian, postal and military donors during the campaign season (September 1st to December 15th) support eligible non-profit organizations that provide health and human service benefits throughout the world--now including the IMF! So, if you are a Federal employee, please participate in the CFC campaign, September 1st through December 15th, and designate the IMF as your beneficiary by using our organization code 1178.


The IMF on the Road in Atlanta
Andy Lebkuecher, Regional Director of Support Groups for the Southeast was invited to attend the Atlanta Employees Health Fair.

Hackensack Support Group Gets New Life
This group is being revitalized by Dr. David Siegel and Nurse Practitioner Ann McNeill with the first meeting to be held in January, 2007! The Hackensack University Medical Center Multiple Myeloma Support group will meet on the 3rd Thursday of each month from 10:30 a.m. - noon. The location has changed to the Sanzari Building, 360 Essex Street, 3rd floor. Ann McNeill, RN, NP-C, will be facilitating this group specifically for myeloma patients, family members, caregivers and friends. For more information, please contact Ann at 201-996-5983 or by E-Mail at amcneill@humed.com.

Cincinnati Area Multiple Myeloma Support Group
This group is just beginning and is seeking interested patients, caregivers and family members to establish a local Cincinnati multiple myeloma support group for the purposes of sharing information and experiences. An initial meeting will be held in early December in either Maineville or Montgomery, Ohio. If interested, please contact Bill Jackson at 513-677-3181 or by E-Mail at wejackson@roadrunner.com.

(IMF Scientific Advisors are marked with an *)
  • Maintenance therapy with thalidomide improves survival in patients with multiple myeloma
    Michel Attal*, Jean-Luc Harousseau*, Serge Leyvraz, Chantal Doyen, Cyrille Hulin, Lofti Benboubker, Ibrahim Yakoub Agha, Jean-Henri Bourhis, Laurent Garderet, Brigitte Pegourie, Charles Dumontet, Marc Renaud, Laurent Voillat, Christian Berthou, Gerald Marit, Mathieu Monconduit, Denis Caillot, Bernard Grobois, Herve Avet-Loiseau*, Philippe Moreau, and Thierry Facon*, for the Inter-Groupe Francophone du Myelome (IFM)
    Blood 2006;108 3289-3294

    • Phase I
      Drug Name: TKI-258
      Sponsor: Novartis
      Indication: a novel, multitargeted tyrosine kinase inhibitor for the treatment of relapsed/refractory multiple myeloma

    • Preclinical
      Drug name: Chaetocin
      Sponsor: Mayo Clinic
      Indication: a fungal toxin that demonstrates potent anti-myeloma activity through oxidative stress and consequent apoptosis induction.

    • Preclinical
      Drug Name: PD173074
      Sponsor: Glaxo Smith-Kline
      Indicaton: small molecule fibroblast growth factor receptor inhibitor that inhibits the growth of two t(4;14)-positive MM lines

    • Preclinical
      Drug Name: SU5402
      Sponsor: Sugen
      Indication: fibroblast growth factor receptor inhibitor that inhibits the growth of two t(4;14)-positive MM lines

    • Preclinical
      Drug Name: recombinant human Mannose-Binding Lectin (rhMBL)
      Sponsor: Enzon
      Indication: for the treatment of severe infections in patients with mm and others who are MBL deficient.

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.


Innovative Strategies for Treating Myeloma: Case Discussions
December 8, 2006
Friday Night Satellite Symposium being held in conjunction with the American Society of Hematology 48th Annual Meeting and Exposition.
Orlando, Florida



The IMF's comprehensive "How-to-FUNdraise" guide is what you need if you're thinking about fundraising in your community but don't know where to start. The guide contains the A - Z of fundraising ideas--like running in a local marathon and asking for donations per mile for myeloma; having a holiday party, where you charge a cover and hold a raffle; asking your local supermarket to donate wine and cheese, then selling tickets and having a cocktail party--as well as tips and guidelines for success. Check out the FUNdraisers below and show your support by donating to their effort online:

Cents for Cells
Beth Morgan is about to undergo a stem cell transplant and she is asking family and friends to help her help the IMF by raising a penny for each stem cell that will be collected. She has dedicated Cents for Cells to the memory of Chris Hollyer.
The Stratford Runner
Sheldon is running 1000 kilometers across Canada to raise money to support myeloma research.
Gina Terry's Run
December 9, 2006
Kiawah Island, South Carolina
See complete list of 2007 UPCOMING EVENTS.

If you use the special IMF links to shop at your favorite internet retailers (e-tailers) like Amazon.com, they will donate a portion of your purchase to the IMF. You pay no more than you would normally for everything from clothing to computers to cruises. Whatever you buy, the programs, publications and research supported by the IMF will benefit. Visit our Shop for the IMF page at http://shop.myeloma.org to see the complete list of popular etailers who will donate a portion of your purchase to the IMF. Giving has never been more painless!
Michael McKean to play Celebrity Jeopardy for the IMF
Michael McKean (Lenny on Laverne & Shirley, The Mighty Wind, Best in Show, etc.) will be playing for the IMF on Celebrity Jeopardy, airing on November 21st. Please check your local listings for the time in your area.
The Gift of Hope
IMFers are requesting Mail For The Cure envelopes and letter templates to include in their Holiday cards this year. What better way to let your friends and family know how they can give the gift of hope at this time of year? Please contact Suzanne Battaglia at SBattaglia@myeloma.org or (800) 452-CURE (2873) and let her know how many envelopes you need. And don't forget to order the IMF's Holiday Ornament ($10 each).
Calling All Kids!
If you are ready to fight back against myeloma, then you need Kids Fight Back, a fundraising program especially for kids.
Tribute Cards
Order these beautiful tribute cards to send out to your friends and family every time you make a donation in their honor to the IMF.
Recipes for Research
Marilyn Alexander, the Philadelphia support group, and the IMF community have come together to create one terrific cookbook and handy kitchen reference. From Autumn Apple Cake to Veal Stimbarada, there is something here for every taste. And if you aren't in the mood to cook tonight, there is an entire section with tips on everything from setting the table to stain remover. At only $15, it will make a great holiday gift.
Ribbon of Hope Ornament
Whether you hang one on your holiday tree, your wall, or any other creative place you can think of, the IMF's 4-inch holiday ornament will bring a message of hope to anyone you give it to. We have a limited number available at only $10 each, so why not order one today?
Imagine Moving Forward is the theme of the IMF's popular myeloma bracelet. At medical conferences and patient & family seminars we see people wearing them in honor, celebration, or in memory of a loved one. They're only $1 each in sets of 10, so order them for everyone you know who has been touched by myeloma. Order them on the web. If you have questions about the bracelets or would like more information, contact Suzanne Battaglia at (800) 452-2873, ext. 227, or SBattaglia@myeloma.org.
See more exciting ways to help the IMF continue its important work in education, support and research.

New Help for Underinsured Myeloma Patients
Thanks to the advocacy of the IMF, the Chronic Disease Fund has received an infusion of new 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 electrónico (enviaremos diez números al año), por favor, envíe 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.

HealthTalk's Multiple Myeloma Education Network

 related articles