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Myeloma Minute
February 10, 2008
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.


Valentine Day Seminar Promotion

A Valentine Gift for You!

Why? Because We Love You!

If you’ve never been to an IMF Patient & Family Seminar, this Valentine's Day we want to share the IMF circle of love. We want to make it easy for you to attend the one event that one patient called, "The most important thing I have done for myself since my diagnosis." All you have to do is register for the March 14-15, 2008 Patient & Family Seminar in Buckhead (Atlanta), GA on Valentine’s Day February 14th —either online, by fax, or by calling the IMF office at 800-452-2873. We will register you and a second person for the cost of one registration fee. That's right. Two for the price of one.

Generic Fosamax Approved
The U.S. Food and Drug Administration today approved the first generic versions of Fosamax (alendronate sodium tablets), used to treat osteoporosis, a condition that causes thinning and weakening of a person's bones. (from FDA News)

FDA Grants Orphan Drug Designation For Novel Akt Inhibitor Vqd-002 In Multiple Myeloma
VQD-002 is a small molecule anticancer compound that inhibits protein kinase B (PKB or AKT), a key component of a signaling pathway known to promote cancer cell growth and survival as well as resistance to chemotherapy and radiotherapy.

Bayer Withdraws Liquid Formulation of Leukine (sargramostim) in US Due to Adverse Reactions
This decision was made in light of an upward trend in spontaneous reports of adverse reactions, including syncope, which are temporally correlated with the liquid Leukine 500 mcg vial which currently contains EDTA (edetate disodium). (from Doctor's Guide)

FDA Issues Recall of Heparin
Baxter Healthcare and FDA notified healthcare professionals of a voluntary recall of certain lots of Heparin (Heparin Sodium Injection 1000 units/mL 1OmL and 30 mL Vials) as a precaution due to an increase in reports of adverse patient reactions associated with these lots. (from Doctor's Guide)

Stem Cells Make Bone Marrow Cancer Resistant to Treatment
Scientists at the Johns Hopkins Kimmel Cancer Center say they have evidence that cancer stem cells for multiple myeloma share many properties with normal stem cells and have multiple ways of resisting chemotherapy and other treatments. (from The Johns Hopkins University Gazette)

When Mixing Medications Can Be Deadly
Although this article was triggered by the death of Heath Ledger, the lesson is important: Patients are often woefully unaware of the potential serious consequences of the additive effects of prescription medications. (from The Wall Street Journal)

Staying Active and Drinking Moderately is Key to a Long Life
All other things being equal, people who drink moderate amounts of alcohol and are physically active have a lower risk of death from heart disease and other causes than people who don't drink at all, according to new research. (from ScienceDaily)

Call for Submissions

Question: Who is a cancer survivor?
Answer: Anyone living with a history of cancer from the moment of diagnosis through the remainder of life.

The Survivor’s Review, a not-for-profit quarterly online journal encouraging the creative expression of cancer survivors, is seeking stories, essays and poems by those who are intimately familiar with the cancer journey.

If you have written a piece that explores the heart of what it means to be a cancer survivor or caregiver, please consider submitting your work to them at www.survivorsreview.org. Their word count is flexible, but most of the features range from 100 to 1,000 words. Please visit the site and contact them if you have with any questions.

FDA Provides Updated Information on Bisphosphonates
FDA is highlighting the possibility of severe and sometimes incapacitating bone, joint, and/or muscle (musculoskeletal) pain in patients taking bisphosphonates (marketed as Actonel, Actonel+Ca, Aredia, Boniva, Didronel, Fosamax, Fosamax+D, Reclast, Skelid, and Zometa). (from FDA News)

Interesting Hotline Question

Q: Should a myeloma patient get the shingles (varicella) vaccine?
A: No. It is a live vaccine, and is therefore unsafe for anyone whose immune system is compromised. The IMF recommends that no myeloma patient receive the shingles vaccine.

Genome Scans for Cancer: What's Next?
Scanning the human genome for genetic variants involved in common cancers began to pay dividends in 2007, and the trend is likely to continue as more large studies involving new types of cancer report their results in the coming year. (from the NCI Cancer Bulletin)
FDA Approves Emend Injections for Prevention of Nausea and Vomiting Caused by Chemotherapy
The FDA approval for EMEND for Injection was based on a study that showed 115 mg of intravenous EMEND for Injection was biologically equivalent to 125 mg of oral EMEND. (from Merck)

Transparent fish gives scientists clear view
Scientists have created a transparent fish that lets them see through its skin to watch the progression of disease in real time. (from NJ.com)

National Cancer Institute Announces Availability of New Easy to Read Radiation Therapy Educational Resources

Written for patients and health care providers, this new radiation therapy series includes:

Designed in easy-to-read and understand formats, these resources provide straightforward information to help patients understand how radiation therapy works and how to best manage its side effects. The patient-centered publications encourage individuals to fully participate in their care by providing personalized tips and key questions to foster discussion between patients and providers.


An Important Milestone for the Myeloma Community

In late 1982 the US Congress passed the Orphan Drug Act, which was signed into law by President Ronald Reagan on January 4, 1983. This Act has been of critical importance to the global myeloma community for a variety of reasons.

As some readers will know, the Act provides a mechanism whereby organizations (commercial and non-profit) can apply for certain exclusive rights in developing and bringing to market products that may be used to treat groups of patients with disorders that each affect fewer than 200,000 individuals in the United States. Multiple myeloma is one such disorder. Developers of so-called “orphan drugs” gain the exclusive right to market a designated drug for an orphan indication for 7 years from the date of FDA approval. During that timeframe, no other manufacturer may market the same chemical or biological product for the same clinical indication. This exclusivity provides manufacturers with an economic “safe haven” through which they may reasonably expect to recover their investment in drug development and earn a profit.

In the 10 years preceding the approval of the Orphan Drug Act, only 10 new drugs had been developed by the pharmaceutical industry for rare disorders. In the 25 years since the approval of the Act, more than 300 new drugs have been approved for treatment of orphan diseases — averaging more than 11 new drugs every year. Importantly for the myeloma community, these drugs have included:

  • INTRON A (interferon alfa)
  • Thalomid (thalidomide)
  • Revlimid (lenalidomide)
  • Velcade (bortezimib)
  • Aredia (pamidronate)
  • Zometa (zoledronate)
  • Procrit (epoietin alfa)
  • Doxil (doxorubicin liposomal) and
  • Trisenox (arsenic trioxide).

In other words, most of the drugs that have had significant impact on the treatment of myeloma over the past 20 years have been developed through the use of the Orphan Drug Act. At least some of them might never have been developed if this Act hadn’t been approved.

Passage of the Orphan Drug Act in the USA also led to passage of similar laws in the European Union, in Australia, in Japan, and in other countries around the world, making it possible for the same drugs to be used in the treatment of myeloma patients in a multitude of other countries too.

Even more importantly, many companies are still using the Orphan Drug Act to develop additional new agents that have significant potential in the treatment of myeloma. There are currently over 1700 drugs designated as orphan drugs by the USA in clinical development for specific orphan disorders. Of course most of these drugs aren’t in development for treatment of myeloma, but many are, and so we can continue to look forward to the impact the Orphan Drug Act will be having on the management of myeloma for several years to come.

It is worth noting that the National Organization for Rare Disorders (NORD) was also established in 1983. NORD is dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is also committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Just as Brian Novis had a vision that led to the founding of the IMF, NORD’s founding president, Abbey Meyers, a housewife from Connecticut whose son needed treatment for a rare disorder, is considered to be the primary consumer advocate responsible for the passage of the Orphan Drug Act. Abbey will be retiring as president of NORD this year.

In collaboration with others, NORD has planned multiple events during 2008 to celebrate the 25th anniversary of the signature of the Orphan Drug Act.

(IMF Scientific Advisors are marked with an *)
  • Thalidomide for treatment of multiple myeloma: 10 years later
    Antonio Palumbo, Thierry Facon, Pieter Sonneveld, Joan Blade, Massimo Offidani, Francesca Gay, Philippe Moreau, Anders Waage, Andrew Spencer, Heinz Ludwig, Mario Boccadoro, and Jean-Luc Harousseau
    Blood published 1 February 2008, 10.1182/blood-2007-10-117457

  • CYP4F2 genetic variant alters required warfarin dose
    Michael D. Caldwell, Tarif Awad, Julie A. Johnson, Brian F. Gage, Mat Falkowski, Paul Gardina, Jason Hubbard, Yaron Turpaz, Taimour Y. Langaee, Charles Eby, Cristi King, Amy Brower, John R. Schmelzer, Ingrid Glurich, Humberto J. Vidaillet, Steven H. Yale, Kai Qi Zhang, Richard L. Berg, and James K. Burmester
    Blood published 4 February 2008, 10.1182/blood-2007-11-122010


  • Phase III
    Drug name: tanespimycin (KOS-953)
    Sponsor: Kosan Biosciences
    Indication: Open-label trial for patients with myeloma in first relapse comparing tanespimycin in combination with a fixed dose of bortezomib versus bortezomib alone.
    Open Site: Charleston Hematology Oncology Associates: Contact Deborah McNeal at d.mcneal@choasc.com.

  • Phase 1
    Drug Name: AVE1642
    Sponsor: Sanofi-Aventis
    Indication: Anti-IGF-1R Monoclonal Antibody combined with bortezomib for patients with rel/ref MM
    Sites: University Hospital, Nantes, France; University Hospital, Lille, France; University Hospital, Torino, Italy

  • Preclinical
    Drug Name: VQD-002 (triciribine phosphate monohydrate, TCN-P)
    Sponsor: VioQuest Pharmaceuticals
    Indication: Small molecule anticancer compound that inhibits AKT (protein kinase B)

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.

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.

Atlanta (Buckhead) Patient & Family Seminar - Atlanta, Georgia
March 14-15, 2008
Vienna Patient & Family Seminar - Vienna Austria
April 25-26, 2008
Barcelona Doctors Regional Community Workshop - Barcelona, Spain
May 28, 2008
Valencia Patient & Family Seminar - Valencia, Spain
May 31, 2008
Ulm Regional Community Workshop - Ulm, Germany
June 25, 2008
Stuttgart Regional Community Workshop - Stuttgart, Germany
June 26, 2008
Seattle Patient & Family Seminar - Seattle, Washington
June 27-28, 2008
Boston Patient & Family Seminar - Boston, Massachusetts
July 25-26, 2008
Short Hills Patient & Family Seminar - Short Hills, New Jersey
August 8-9, 2008
San Diego Patient & Family Seminar - San Diego, California
August 22-23, 2008

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:

An Evening of Believing - Lewisville, Texas
February 23, 2008
IMF Charity Golf Outing - Yorkville, Illinois
July 12, 2008
Cents for Cells
Beth Morgan is helping the IMF by raising a penny for each stem cell that will be collected for her BMT. She has dedicated Cents for Cells to the memory of Chris Hollyer.
Commissions for Chris: A Campaign to Honor Chris Hollyer
Jo Marie Gray is donating her new-client commissions from the sale of Arbonne Cosmetics to the Chris Hollyer Research Fund at the IMF.
Clyde's Ride for the Cure
Clyde is riding his bicycle to support the work of the IMF. "I say, 'until there is a cure I ride for the IMF.'"
Debbie Exner's Walk for Myeloma
Debbie walked the PF Chang Half Marathon in Phoenix on January 13, 2008 to raise money for the IMF in honor of her mother. You can still donate to her cause.
Losing Weight to Gain Awareness
Debi is losing weight to raise money for research and the awareness programs of the IMF.
Miles for Myeloma
Larry Bartolin is a six-year survivor of multiple myeloma, and is riding his motorcycle to raise funds and public awareness.
Spirit of 76
James Conrad is 76. On New Year's Day, he started his 'Run for a Cure' with an objective of 760 miles and donations/pledges of $7600.

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. And you can order beautiful tribute cards to send out to your friends and family every time you make a donation in their honor to the IMF.We sincerely thank you for your support.
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!
How About Hong Kong?
Or Cancun or Sydney. No matter where you want to go, IMF Travel Advantage has a package for you.

Read the latest issue of the IMF Travel Advantage newsletter for these and other fabulous trips. Great prices and you are helping the IMF with every vacation.
Caregiver Daily Journal

Caregiver Daily Journal
If you know a caregiver, the IMF's own Sylvia Baca has written a journal to help document the daily care they give their loved one. It's $25, with all profits going to support the programs of the IMF..

Sarah Klein's Bracelets

Sterling Bracelets by Sarah Klein
Sarah Klein's father, Benson, was diagnosed with myeloma in 1998, and has been in remission for 8 years.
Sarah wants to give back to the IMF in her own creative way and has designed two special bracelets made up of semi-precious healing stones. A portion of the proceeds from the sale of these bracelets is being donated to the IMF.

Multiple Colors for Multiple Myeloma Keychains and Earrings
Bring rainbows of happiness, color and light into your loved ones' lives with an IMF keychain or Swarovski crystal earrings.

Arbonne Cosmetics
Jo Marie Gray is donating her new-client commissions from the sale of Arbonne Cosmetics to the Chris Hollyer Research Fund at the IMF.
IMF Logo Items
Let the world know that you support the groundbreaking research and innovative patient support programs of the IMF with a hat or shirt or bracelets!
See more exciting ways to help the IMF continue its important work in education, support and research.


The National Cancer Institute (NCI), a federal agency that is part of the National Institutes of Health (NIH) and the George Washington School of Public Health, would like to talk to women who are providing care for a family member or friend with cancer. They’d like to learn about your caregiving experience and how you have coped. If you are:

  • Female
  • African American
  • Between the ages of 31 and 80
  • Currently providing care for someone over the age of 20 with cancer, OR you provided care for someone over the age of 20 with cancer at end-of-life within the last year

Call them toll-free at 1-888-249-0029 (Monday to Friday, 9am-5pm EDT)

They will ask you some questions about yourself and your caregiving experience. Participating in this study involves a total of 15-20 minutes by phone. If they qualify, eligible participants may be asked to provide additional information about their caregiving experiences in a follow-up telephone interview that will last approximately 45-60 minutes.

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.

Mensajero del Mieloma
La IMF quiere enviar información sobre el mieloma en español a todos los pacientes, familiares e interesados. Para suscribirse al correo electró nico (enviaremos cuatro ejemplares al año), por favor, env íe 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.

Check out HealthTalk's Multiple Myeloma Education Network and Andrew Schorr's Patient Power.

Sign up for a FREE Subscription to Myeloma Today, the
Official Newsletter of the IMF!

Many thanks to the supporters of The Myeloma Minute:
Celgene Corporation, Kyphon, Millennium Pharmaceuticals, Ortho Biotech, 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 2008. International Myeloma Foundation. All Rights Reserved.

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