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Myeloma Minute - August 30, 2006
09.01.06

WHAT'S NEWS

The Medicare Drug Dilemma
The Motley Fools, the gentlemen who have explained the ins and outs of investment to those of us for whom a hedge fund means something you use to pay for Pittosporum, take on Medicare Part D.

The Medicare Drug Dilemma: Part 1
The Medicare Drug Dilemma: Part 2

Improving Outcomes for Older Myeloma Patients
An Alternative for Patients Who Can't Have Stem Cell Transplant
A review of the benefit of adding Thalomid or Velcade to the melphalan/prednisone cocktail.(from the American Cancer Society)

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. You do the math....

Nonsecretory Plasma Cell Myeloma-Becoming Even More Rare With Serum Free Light-Chain Assay: A Brief Review
Shaw, Gene R
Initial data using a recently developed nephelometric serum free light chain assay suggests that only about one fourth of nonsecretory plasma cell myeloma cases may be truly nonsecretory. The definition of nonsecretory plasma cell myeloma should be modified to exclude cases with evidence of clonality using the serum free light chain assay. (from Archives of Pathology and Laboratory Medicine)

IMF Gala hotel a featured player in the movie Pretty Woman
Just steps from the glittering shops of Rodeo Drive, the Regent Beverly Wilshire has been called home by Elvis Presley, John Lennon, and Warren Beatty. And on the night of October 21st, it will be the home of the IMF's 16th Annual Gala! To learn more about the sights and adventures surrounding the Regent Beverly Wilshire, and to purchase your tickets for the Gala, please click here.

IMF Hotline to be represented on Team Continuum at NYC Marathon on November 5th
Time is running out (no pun intended) for you, or someone you know who may be more likely to run a marathon, to register for the grandaddy of all marathons. If you have ever called the IMF Hotline, you may have talked to Paul Hewitt, who is taking on the challenge. If you would like to support Paul as he runs for the IMF, click here.

The New York City marathon is a very prestigious race, and slots are hard to come by. That is why the 25 guaranteed slots offered to IMFers by Team Continuum, a non-profit founded by myeloma survivor Paul Nicholls to help all cancer patients, represent such a great opportunity. If you would like to register for the race, click here.


WHAT'S NEW IN RESEARCH

  • CLINICAL TRIALS

  • NEW TO THE MATRIX
    • Preclinical
      Drug name: PD 0332991
      Sponsor: Pfizer
      Indication: orally active small molecule that inhibits enzymes and proteins in the myeloma cell.
    • Phase: pre-clinical
      Names: Thymoglobulin (rabbit-derived polyclonal anti-thymocyte globulin)
      Sponsor: SangStat Medical Corp.
      Indication: drug approved for treatment of kidney transplant rejection shows activity against myeloma cell lines in vitro and in vivo.

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.


UPCOMING SEMINARS AND CLINICAL CONFERENCES

Czech Patient & Family Seminar
September 2, 2006

The Czech Republic
4ème Séminaire d'Information et de Soutien Pour les Patients et Leur Famille
September 8, 2006
Paris, France
Seminario para Pacientes & Familiares
September 23, 2006
Pamplona, Spain
Seminario per i pazienti e le famiglie
September 29, 2006
Bologna, Italy
Seminário para Pacientes & Familiares IMF LA
September 30, 2006
Caracas, Venezuela

Myeloma Canada Patient, Family & Healthcare Professionals Seminar
October 28, 2006
Montreal, Canada

2nd Southwest Symposium on Multiple Myeloma
November 4, 2006
Tempe, Arizona


UPCOMING EVENTS

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.

John's Run for Myeloma
October 15, 2006
Columbus, Ohio
2nd Annual Walk for Myeloma
October 15, 2006

Miami, Florida
Money for Miracles
The first annual fundraiser from the Rhode Island MM Support Group
October 27, 2006
Cranston, Rhode Island
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 last year. So we decided to extend the program. To date, the campaign has raised over $13,000 to support the IMF's programs. 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).

HELPING THE IMF

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!

Calling All Kids!
If you are ready to fight back against myeloma, then you need Kids Fight Back, a fundraising program especially for kids.

Win a Trip for Two to Barcelona, Spain!
You could support the IMF's Myeloma Research and win a trip to Spain.
Fly American Airlines and stay at the Hotel Arts Ritz-Carlton in Barcelona for 7 days and 6 nights, including daily breakfast for two. Read on....

Turn Your Vacations Into Donations
Book your personal and business travel on our new travel website, myelomatravel.com! Every time you do, the IMF will receive a portion of the travel commissions. You get the same low rates offered by other travel websites while helping to raise funds for the IMF's education and research programs. It's that simple!
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
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 affiliate 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.
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 indefinitely. To date, the campaign has raised over $11,000 to support the IMF's programs. 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).

ITEMS OF INTEREST

Help for Underinsured Myeloma Patients
Help is now available through the Chronic Disease Fund to 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.

'International uniform response criteria for multiple myeloma' published in the journal Leukemia
The article is the result of the work of the International Myeloma Working Group.

Mayo Clinic Consensus Statement for the Use of Bisphosphonates in Multiple Myeloma
A multidisciplinary panel consisting of hematologists, dental specialists, and nurses specializing in the treatment of myeloma reviewed available data concerning the use of bisphosphonates. Guidelines for the use of bisphosphonates in MM were developed. This link is to the full article.

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 Opens
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. ¡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.

HealthTalk's Multiple Myeloma Education Network

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.
Please call the hotline (800) 452-CURE (800-452-2873) or email TheIMF@myeloma.org if you have any questions.
Copyright 2002-2006. International Myeloma Foundation. All Rights Reserved.


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