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Myeloma Minute - July 8, 2008

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


WARNING: Biaxin and statins
Co-comitant administration of Biaxin® with a variety of other medications can alter drug metabolism and potentially cause problems.  This is because Biaxin can affect drug metabolism in the liver affecting the CYP3A enzyme system. A very important example is that Biaxin® (clarithromycin) can greatly accentuate the muscle toxicity that can be caused by statin drugs. Therefore, any combined use of Biaxin with drugs such as atorvastatin (Lipitor®), lovastatin (Advicor®, Altoprev®, Mevacor®), simvastatin (Zocor®), or other statins must be with great caution or not at all.  If you are taking a statin, you should not take Biaxin as an antibiotic or as part of your myeloma regimen at the same time.  If you are currently taking both drugs, please talk to your doctor and have your creatine phosphokinase (CPK) enzyme measured via a blood test.  If you are experiencing any muscle pain or cramping, report this to your doctor immediately. Since a number of other drugs can be affected by Biaxin®, please review any combined use of Biaxin® with other drugs very carefully with your physician and/or pharmacist.

Previously Untreated Patients Could Benefit from FDA Approval of VELCADE® for Front-Line Use
As patients live longer they will need more drugs available in combination and sequence. With the new approval, doctors now have the confidence of FDA support when they offer eligible newly diagnosed patients VELCADE as an induction therapy.

Employers use federal law to deny benefits
The story has played out often under the federal Employee Retirement Income Security Act (ERISA). Designed to protect employee benefits, the law has been used by employers as a shield against suits. Federal appeals courts, interpreting Supreme Court decisions dating to 1993, consistently have said companies that offer health, life and retirement benefits under ERISA cannot be sued for large amounts of money, or damages. Instead, they can be sued only for typically smaller sums such as insurance premiums. Several federal judges have bemoaned the unfairness even as they have felt constrained to rule in favor of employers. (from Yahoo News)

SAVE THE DATE! The IMF's 2nd Annual Comedy Celebration Benefiting the Peter Boyle Memorial Fund - November 15, 2008
Hosted by Ray Romano, the Celebration features Jeff Garlin, Patricia Heaton, Doris Roberts and Fred Willard. In the 1980's Norman Cousins wrote that laughter could be used to relieve pain and improve quality of life. That's nothing! At the IMF's Comedy Celebration, laughter can help cure cancer. Every ticket sold helps the Peter Boyle Memorial Fund support myeloma research. So make your plans to attend this worthwhile laugh fest.

President Bush Signs Landmark Genetic Nondiscrimination Information Act (GINA) Into Law
GINA is the first and only federal legislation that will provide protections against discrimination based on an individual’s genetic information in health insurance coverage and employment settings. (from Science Daily)

Managing the Side Effects of Novel Agents for Multiple Myeloma: Guidelines From the International Myeloma Foundation Nurse Leadership Board
Published in the Clinical Journal of Oncology Nursing, Volume 12, Supplement, June 2008, these guidelines were written by the IMF Nurse Leadership Board, made up of experienced specialty oncology nurses, and are the first comprehensive guidelines for managing side effects from lenalidomide, thalidomide, bortezomib, and steroids used in the treatment of multiple myeloma.

Medicare Updates Its List of Recognized Sources to Help Make Coverage Decisions for Anti-Cancer Chemotherapy Drugs
CMS will recognize the National Comprehensive Cancer Network (NCCN) Drugs & Biologics Compendium™ as an additional source of information and cease use of the no longer updated or maintained American Medical Association Drug Evaluations (AMA-DE) compendium. (from the Centers for Medicare and Medicaid Services)

Mail for the Cure
All over the world, people are mailing letters to their family and friends, sharing the importance of myeloma research and the IMF’s other vital programs and asking for their support. Because of IMF members like you, this global fundraiser has already raised nearly $70,000 to make a difference for myeloma patients and families everywhere. Let's not stop there.

Study Shows That Small Protein Can Broaden Immune Response in Humans
Chemotherapy often deplete the body of lymphocytes, thereby, reducing immune function. Treating cancer patients with interleukin-7 (IL-7), a small protein that can stimulate the immune system, leads to an increase in lymphocytes, key to the production of effective immune responses, in the body, according to a new study by researchers at the National Cancer Institute. (from NIH News)

Blocking a Single Protein Proves Toxic to Myeloma Cells in Laboratory Studies
Researchers at the National Cancer Institute have found that myeloma cells rely on the activity of a single protein, called IRF4, for the activation of a wide range of genes responsible for cell survival and spread. Blocking the production of this protein can be strikingly effective in eliminating cancer cells in laboratory models of multiple myeloma. (from NIH News)

Read the associated article in the NCI Cancer Bulletin: Master Protein Controls Multiple Myeloma Cells

Senesco Inks Two Deals to Help Progress Its Gene and siRNA Combination Therapy
Senesco has entered into separate agreements related to its combination therapy consisting of the Factor 5A gene and siRNA against Factor 5A. The drug is in the preclinical development against myeloma. (from Genetic Engineering & Biotechnology News)

Have you had a bone marrow transplant, stem cell transplant, or cord blood transplant?
Researchers at the Mount Sinai School of Medicine are looking for people who:

  • Had a transplant between 9 months and 2 years ago
  • Are living with their disease or free of disease after a successful transplant
  • Are at least 18 years old (and 16 or older at the time of transplant)
  • Speak English
  • Have telephone service

If you answered yes to each of these questions, you may be eligible to join a study that will test a program designed to help people experiencing problems and concerns reported by some people who have undergone hematopoietic stem cell transplant for treatment of cancer and related diseases.

To determine whether you are eligible to join the study, you will be asked to complete a 20 minute telephone screening interview that includes questions about your background and your thoughts and feelings about your illness and transplant.

If you are found to be eligible and if you decide to join the study, you will complete study procedures from your home, directed by a study staff member. The study includes two telephone interviews, spaced over about 4 months. One will take about 45 minutes and the other will take about 60 minutes. Between the two interviews you will be asked to complete four 30-minute study sessions that involve writing about various topics. You will be compensated for your time and effort.

To hear more about this study, contact Christine Rini at (212) 659-5555 or Lisa Wu at (212) 659-5586.
You can also email us: christine.rini@mssm.edu or lisa.wu@mssm.edu.

This study is being conducted at Mount Sinai School of Medicine and is funded by the American Cancer Society. It has been approved by the Mount Sinai Institutional Review Board (GCO# 06-0391 approved through 9/17/08)

by Christine Murphy

Senate Under Pressure To Pass Legislation That Would Stop Medicare Physician Fee Cut

This week, the Senate will hold another cloture vote on a House-passed bill (HR 6331) that would avert a 10.6% reduction to Medicare physician fees that was scheduled to take effect on June 30. Before the Fourth of July recess, the measure failed by one vote to receive the 60 votes required to gain cloture in the Senate. The House last month passed the measure by a veto-proof margin. The bill is similar to a measure (S 3101) proposed by Senate Finance Committee Chair Max Baucus (D-MT), which also failed to receive enough votes for cloture. If Congress does not pass legislation or an extension, the cut will go into effect next week.

The American Medical Association (AMA) has indicated that if the cut occurs, many physicians will stop taking Medicare beneficiaries. Although both Democrats and Republicans want to avoid the cut, they cannot agree on how to pay for the measure, which would cost $20 billion over five years. Democrats want to trim Medicare Advantage payments to finance the bill, while the White House and many Republicans oppose such cuts.  The White House issued a veto threat for any fix that includes cuts to Medicare Advantage payments.  The AMA launched an advertising campaign to put enough pressure on Republican Senators to change their votes.

Senate Republicans are want to buy time to negotiate on comprise legislation by passing a 31-day extension of physicians' current Medicare fees.  An extension would allow the Senate to again focus on compromise legislation that Baucus and Senate Finance Committee Ranking Member Chuck Grassley (R-IA) were nearly finished with when the Medicare bill passed the House by a veto-proof margin, which sent the compromise measure to the back burner.  AMA opposes a month long delay.

(IMF Scientific Advisors are marked with an *)


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.

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.

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
Myeloma Canada: Patient, Family & Healthcare Professionals Conference - Toronto, Canada
September 12-13, 2008
5th International Symposium on Clinical Applications of Serum Free Light Chain Analysis - Bath, United Kingdom
September 18-19, 2008
Paris Patient & Family Seminar - Paris, France
October 10, 2008
Rome Patient & Family Seminar - Rome, Italy
October 17, 2008

SpringHot Time in the Summertime!
From a day of beauty to a walk in the clouds, from yard sales to concerts, IMFers are creating fun days to raise money to help support the important work that the IMF is doing in both research and education. Check out the FUNdraisers below and show your support by donating to their effort online:
7th Annual Multiple Musicians against Multiple Myeloma (MMAMM) - Sea Cliff, New York
July 13, 2008
8th Annual Wamp Swim-a-Thon - West Hartford, Connecticut
July 19, 2008
Carolyn Czerkies Charity Golf Outing - Yorkville, Illinois
July 19, 2008
Traveling the World in Search of a Cure - Jenkintown, Pennsylvania
September 26, 2008
10th Annual Evening 4 A Cure - Lancaster, New York
November 1, 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.

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!
Five Nights In Tahiti! Can't go wrong in a sarong!
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 this 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.


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!

Multiple Myeloma: Determining Prognosis and Choosing Therapy
Medscape online CME featuring IMF Scientific Advisor Seema Singhal, MD,

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.

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, Millennium Pharmaceuticals 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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