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Myeloma Minute - June 14, 2006


  • The IMF Reports from ASCO
    The 2006 meeting of the American Society for Clinical Oncology (ASCO), June 2 through 6 in Atlanta, Georgia provided encouraging news about the use of novel therapeutics as single agents and in combination therapy in patients with newly dosed or relapsed myeloma.

  • Complete list of presentations on myeloma at ASCO
    For the first time at ASCO, myeloma was featured in the Plenary session.

  • Industry news from ASCO 2006
    Highlights of the key presentations from the conference.
  • Cancer-drug ads hard to read
    Researchers at Dana Farber reported at ASCO that "direct-to-consumer advertising of oncology medications typically focuses on the drugs' benefits, as would be expected, but it does so in a manner that might lead some cancer patients to not appreciate equally the drugs' potential side effects and risks." (from United Press International)

  • Vitamin D Targets Thrombosis In Cancer Patients
    Researchers from Canada reported at ASCO that a
    clinical trial of a biologically active metabolite of Vitamin D3 demonstrated an unanticipated reduction of thrombosis in cancer patients. Thrombosis is a serious complication in advanced cancers and affects between 15 and 20 per cent of all cancer patients. (from Medical News Today)

  • New test identifies patients who benefit from targeted cancer drugs
    Clinical data presented at ASCO show that the new test, called the EGFRx assay, predicted accurately for the survival of patients treated with the targeted drugs. The EGFRx test, which can also be applied to many emerging targeted cancer drugs, could help to help to solve the growing problem of knowing which patients should receive costly, new treatments that can have harmful side-effects and which work for some but not all cancer patients who receive them. (from news-medical.net)

  • We videotaped interviews with key presenters at ASCO and are preparing the videos for you as you read this. So, watch for a Special ASCO Minute coming shortly. Here is a little taste of what's to come....An overview of the meeting from Dr. Durie.


  • Let Maddie Hunter take you to the 2006 IMF Support Group Leaders' Retreat!
    Take red wine, dark chocolate, donuts, and custom chips. Mix in people from 4 European countries, 5 Canadian provinces, and 18 US states, along with stellar IMF staff and Board members, plus 1 psychotherapist. Cook at about 100F degrees in an Arizona resort and you have the 7th annual IMF Support Group Leaders' Retreat. What a recipe for success!

  • If you reside in Nassau County in New York state and are looking for a support group, help is on the way. Sheryl Goldberg and friends are working on starting a support group for myeloma patients and their friends and family. If you are interested in attending or helping out, please contact Sheryl at 516- 379-5221 or write to her at SherylIMF@aol.com.

  • Feds push to enroll more in prescription-drug plans
    The Bush administration has begun a new effort to track down and sign up millions of low-income people on Medicare who are not receiving prescription-drug coverage. The Social Security Administration will start by sending out 500,000 applications to a select group of seniors age 79 and up. The applications will also target seniors in low-income neighborhoods, people with disabilities, Hispanics and those who do not handle their own financial affairs. (from USA Today)

    The IMF hotline is a source of the latest and greatest information on all aspects of myeloma treatment, including myeloma clinical trials. If you are interested in a particular experimental therapy or need details on the availability of clinical trials, be sure to contact the IMF hotline staff at 1-800-522-2873, 9 a.m. to 4:00 p.m. Monday through Friday.

  • New test offers speedy reading of genetic makeup
    Researchers used a new technique called DNA barcoding to scan six feet of unravelled genetic material plucked from a single cell of a donor in two weeks. The multimillion-dollar Human Genome Project, which produced the first draft of the human genetic code in 2000, took three years to complete. (from the Guardian)

  • Monet Money
    IMFer Jack Verespy is a multiple myeloma survivor and is in the fine art and fine art reproduction business. If you are a collector, their company, Oscar LLC, is selling very limited edition giclée on canvas prints of possibly unknown Monet works. They are in the process of authenticating the original paintings, and when the prints are sold, they will donate a portion of the proceeds from the sale of these prints to the IMF. In addition, they will be offering a 20% discount to anyone identifying themselves as an IMFer. For more information, please visit www.oscarllc.com


Cancer and medical research were among the big losers in the fiscal year 2007 appropriations bill approved by the House Appropriations Subcommittee on Labor, HHS, and Education on June 7, 2006.

The full bill totaling $141.93 billion included a statistically insignificant increase of more than $800 million. However, the funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI) continued the trend of the past three years of further cutting funds and putting the progress of research at risk.

NIH and NCI funding were the same as the President's Budget proposal. NIH received $28.258203 billion, a decrease of $306 million from the previous year. NCI's funding was $4.753609 billion, a decrease of $39.747 billion as compared to fiscal year 2006.

As reported in earlier editions of the Myeloma Minute, language will likely be included in the bill by the full House Appropriations Committee to express the "sense of the House" that conferees should strive to reach the Senate figures when both chambers meet later this year to iron out differences in their respective bills.

The full House Appropriations Committee is expected to meet next week.


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.


Seminário para Pacientes & Familiares IMF LA
June 24, 2006
Rio de Janeiro, Brasil
Multiple Strategies for Treating Myeloma: Case Discussions
Register now for this FREE case-based CME dinner activity for physicians coming to an area near you: Thursday, July 6, 2006, in Portland, Oregon and Thursday, August 3, 2006 in Philadelphia, Pennsylvania.
Portland Patient & Family Seminar
July 7-8, 2006

Portland, Oregon
Seminário para Pacientes & Familiares IMF LA
July 31, 2006
São Paulo/SP, Brasil
Philadelphia Patient & Family Seminar
August 4-5, 2006

Philadelphia, Pennsylvania
4ème Séminaire d'Information et de Soutien Pour les Patients et Leur Famille
September 8, 2006
Paris, France
Seminário para Pacientes & Familiares
September 23, 2006
Pamplona, Spain
Seminário para Pacientes & Familiares IMF LA
September 30, 2006
Caracas, Venezuela


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 summer BBQ, 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:

The Stratford Runner
Sheldon is running 1000 kilometers across Canada to raise money to support myeloma research.

5th Annual Multiple Musicians Against Multiple Myeloma
July 9, 2006

Sea Cliff, New York

6th Annual Wamp Swim-a-thon
July 22, 2006
West Hartford, CT
2nd Annual Walk for Myeloma
October 14, 2006

Miami, Florida
  • Mail for the Cure Extended
    Many of you requested envelopes to participate in our Mail For The Cure campaign, but were unable to send them out by the end of the year. So we have decided to extend the program for another six months. So far, the campaign has raised over $8,000 to support the IMF's programs, and we know there will be a lot more coming in judging by your requests for information. If you have any questions or would like more envelopes and/or a letter template, please contact Suzanne Battaglia at SBattaglia@myeloma.org or at (800) 452-CURE (2873).


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!

Are you thinking of running in a local marathon, 5K or 10K, or doing a walk-a-thon this summer? If so, there is no easier way to help raise money and public awareness for myeloma programs and research, than to walk or run for the IMF! We will provide you with our tee-shirt and cap, and sponsorship forms and a letter template. Then, all you have to do is a mailing to your friends, family and associates, include the sponsorship form or donation envelope, and as easy as 1-2-3, you're fundraising while doing something you were going to do anyway! We can also provide you with printed materials to include in your mailing, briefly explaining what myeloma is, and who the IMF is, to those people in your circle who may not know. You can run or walk in honor or in memory of someone, or just do it for yourself. And you can be sure that 100% of the money you raise will go to myeloma programs and research. Suzanne Battaglia will work with you to set the wheels in motion, and you will be surprised to learn how easy it is. Please call or email her at (800) 452-2873, or SBattaglia@myeloma.org. She is waiting to hear from you.

Read for Research!
Book clubs all over the US are asking their members to use the special IMF links to Amazon (amazon.myeloma.org) and Barnes and Noble (barnesandnoble.myeloma.org) to purchase their book selections each month. That way, members can get the benefit of the same everyday low prices on these web sites AND every purchase results in a donation that supports the programs of the IMF. If your book club hasn't been buying books using the IMF affliate program links, what are you waiting for? Make your purchases count. Use the links!

  • 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 Mother's Day 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.


    The IMF Joins the Combined Federal Campaign
    The IMF is thrilled to announce that it has been selected to join the Combined Federal Campaign (CFC). Each year, the CFC's workplace campaigns help raise millions of dollars. 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.

    National Oncologic PET Registry Now Open
    The National Oncologic PET Registry (NOPR) opened May 8th to ensure access to Medicare reimbursement for certain types of positron emission tomography (PET) scans. You may recall Dr. Durie's statement in February of last year: "[The IMF has] worked hard for reimbursement because we believe PET scanning is an important tool for diagnostic evaluation, staging, and monitoring for myeloma. This is a very encouraging decision by Medicare, and an important step forward for myeloma patients."

    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. Queremos lanzar el número inicial la primera semana de junio. ¡Gracias!


    International Staging System

    A tool to help understand the current status of the disease and the questions you should be asking.

    Anyone who has had radiation, chemotherapy, or any medical procedure knows the humiliation of a hospital gown. The Original Healing Threads™ are garments that are sophisticated, attractive, comforting, and most importantly, dignified.

    HealthTalk's Multiple Myeloma Education Network

    The HealthWell Foundation is a non-profit, charitable organization that helps individuals afford prescription medications they are taking for specific illnesses. The Foundation provides financial assistance to eligible patients to cover certain out-of-pocket health care costs, including:

      • Prescription drug coinsurance, copayments, and deductibles
      • Health insurance premiums
      • Other selected out-of-pocket health care costs

    The HealthWell Foundation has recently opened the Multiple Myeloma fund to help even more patients gain access to the best health care available.  You can contact them at (800) 675-8416 or at www.healthwellfoundation.org.

    Patient Access Network Foundation (PANF) provides copay assistance for myeloma. Thalomid is the MRDD product covered for this condition. The PANF formerly just covered qualified myeloma patients' erythropoietin alpha expenses. Patients or healthcare providers may initiate the application process. Applications must be completed by both physician and patient, and income verification is required. Their phone number is 1-866-316-7263.

    Walgreens offers help in making Medicare prescription insurance plan choice.
    You fill out a form, take it to your nearest Walgreens, and they give you a free report that tells you all the major plans available in your area, including their web addresses and phone numbers; how many of your current prescriptions each plan covers; each plan's monthly premium and deductible; the co-pays for each class of prescription and more.

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