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January 16, 2003 Myeloma Minute
01.16.03

What's in the News

  • More Gene Therapy Studies Are Suspended
    For the second time in three months, officials have suspended gene therapy studies because of a leukemia-like side effect. (from the Seattle Post Intelligencer)
  • Memory Problems Linked to Cancer Treatment
    Psychologists are beginning to verify what many breast cancer survivors have long suspected: chemotherapy can, in some cases, cause problems with memory and concentration. (from the NY Times)
  • Old drug offers new hope for cancer
    This is old news to readers of the Myeloma Minute: The drug thalidomide, which became infamous for causing birth defects in the 1960s, could extend the survival times of patients with an incurable form of blood cancer by a year or more, researchers reported Tuesday. (from UPI)
  • City scientists offer new hope in cancer fight
    Cancer victims are set to be given individually tailored treatment to help increase their chances of survival thanks to groundbreaking research by Capital experts. (from the Edinburgh Evening News)

What's New in Myeloma Research:

  • Serum free light chain immunoassays and their clinical application
    A.R. Bradwell FRCP, H.D. Carr-Smith Ph.D., G.P. Mead Ph.D. and M.T. Drayson
    Free Light Testing is one of the newer technologies for Myeloma. The Binding Site, Inc. invented the Free Light Test and will have a guest speaker at the IMF Patient & Family Interactive Seminar in Los Angeles January 25, 2003.

Advocacy Update:

The following is a copy of an op-ed that appeared today in the Washington Times. A special thank you to Friends of Cancer Research President Ellen Sigal for allowing us to reprint the editorial below by Friends of Cancer Research Board Member Norman Schwarzkopf

OPERATION NIH FUNDING
H. Norman Schwarzkopf

When you have brought the enemy to its knees, you do not turn tail and give up the fight. This axiom of military strategy appears to be lost on the nation's lawmakers, who stand poised to deprive medical researchers of the dollars they need to see their wars on disease through to the finish. Just as they deliver funds to protect the homeland in the name of national security, so legislators should provide for the nation's health security. With breakthroughs in heart disease, Alzheimer's, multiple sclerosis, diabetes, and cancer on the horizon, congressional failure to meet the National Institutes of Health's budget requests could devastate research and delay lifesaving treatments.

Last spring, President Bush submitted a 2003 budget that contained funding increases for NIH to match research needs, but the logjam on appropriations bills in the 107th Congress stalled this critical provision. If the 108th Congress does not pass the 2003 budget bill in January, then this year's federal medical research funding will be stymied at the 2002 budget level. The administration must pressure congressional leaders to pass its original funding proposal or risk endangering progress on essential research.

Not only scientists working at NIH headquarters but also researchers at academic and independent laboratories nationwide would be affected by a failure to meet NIH's fiscal requirements. As an example, consider the case of the National Cancer Institute (NCI), just one of the NIH's eleven research centers. The NCI is requesting $5.69 billion in 2003 to cover both its own outlays and those of its research affiliates across the country. In light of the toll cancer exacts each year — taking the lives of 500,000 men, women, and children, with 1.2 million new victims diagnosed annually — the $5.69 billion does not seem such a high price to pay. The cost is especially reasonable when compared to the nearly $61 billion in medical expenses that went to treating cancer patients last year alone.

NCI and its affiliated cancer centers would devote their increased funding to causes like boosting the number of Americans newly diagnosed with cancer who enter into early clinical trials. The money would also underwrite the continued exploration of promising new therapies, including approaches that analyze the contribution of genetic and environmental factors, demystify molecular functions and decode the cancer cell. With such investigations underway, the medical community is on the brink of being able to read the signatures on cancer cells and use the information to detect cancer at its earliest stage, to diagnose and classify tumors according to their molecular profiles and to devise treatments that selectively target molecular signatures.

The field of cancer is a microcosm for broader American leadership in global medical research. Since the declaration of the "war on cancer" in 1971, US scientists have pioneered treatments of childhood leukemia, testicular cancer and other formerly hopeless forms of the disease. Beyond the cancer field, federally funded research by scientists at U.S. academic institutions and independent laboratories has provided a lifeline to people stricken with fatal illnesses in this country and abroad. If the NIH's request for increased funds is not met, the most exciting new work on cancer and other health threats — from disease to bioterror — will be curtailed.

The lack of resources could also divert the next generation of talented young scientists into other careers, endangering a vital sector of the American economy. Precious lives depend on the ability of researchers from different fields to bring their varied expertise to bear on the newly mapped genome, on the threat posed by microbes wielded by terrorists and rogue regimes and on the ongoing struggle against neurodegenerative conditions, heart disease and cancer. By delivering on the NIH's budget request, Congress can bring the benefits of multitiered research to the American people and their allies abroad.

To fulfill its mandate, the NIH requires the freedom of a fully funded creative environment. Strong research programs, support structures and collaborations are the key elements of the drive to critical discoveries. Let's deploy sufficient resources to let the guardians of the nation's health do their job and bring diseases and dangerous microbes to the point of surrender.


Quality of Life Update:
  • Coachella Valley (California) Area Multiple Myeloma Support Group Meeting will be tonight, January 16th from 4:00-6:00 pm at the Northern Trust Bank at the corner of Frank Sinatra Drive and Highway 111.

    The purpose of the meeting is to present an interactive session which will focus on health issues of particular importance to individuals with Multiple Myeloma. Spouses, caregivers, loved ones and friends are invited to attend.

    All Multiple Myeloma Survivors in the Coachella Valley are encouraged to attend this important meeting.

If you are interested in joining a support group, use the IMF's worldwide support group directory to find one that meets near you. You can also join our online support group.

If you have a topic of particular interest that you would like us to feature, if you are starting a support group, or if you are in a support group that is doing something to make a real difference in the lives of mutiple myeloma patients and their families and friends, let us know.


Items of Interest:
  • The National Cancer Institute, part of the National Institutes of Health, is currently developing educational materials for cancer patients & their families. As part of this effort, they are conducting a series of focus groups with the adult partners of cancer survivors. Participants will take part in one 90-minute telephone focus group and will be paid for their time.

    To make sure they are reaching all people affected by cancer, they are still looking for the following types of individuals:

      • African American, Latino, Asian American, Pacific Islander or Native American men - age 21-55
      • African American, Latina, Asian American, Pacific Islander or Native American women - over age 55
      • All races & ethnicities, men - over age 55

    If the following statements apply to you, they are interested in speaking with you further:

    • Your spouse or partner is a cancer survivor.
    • You have not personally received cancer treatment in the last six months.
    • You are not a physician, nurse or other health professional.

    Your opinion is important to them – and they would value your input. If you are interested in participating in this project, please call Larry Glade at Blarry House Research (866-409-7953 toll free) or e-mail him larryg@blarry.com by January 30, 2003.

  • NexCura Cancer Profiler
    The Cancer Profiler is a free service (no hidden fees or charges). Its tools provide you with information specific to your cancer diagnosis to help you make more informed treatment decisions along with your physician.
  • Expert Opinions on Multiple Myeloma
    A multimedia, CME-accredited program for physicians with the chance to see world-renowned myeloma specialists sharing their knowledge, discussing treatment choices, and comparing their perspectives on controversial issues in multiple myeloma and related diseases.
  • Myeloma Matrix
    The Myeloma Matrix provides updated information about drugs beginning with pre-clinical developments and tracks drugs as they proceed through Phases I – III of clinical trials, drugs that have been FDA approved, and information on trials that are being conducted by NCI- sponsored cooperative groups as well as other myeloma study groups. The online version is updated regularly. If you would like to have a printed copy, call the toll-free hotline (800) 452-2873.
  • Bank On A Cure™
    The IMF is pleased to announce the launch of Bank On A Cure™, a groundbreaking international collaborative effort to establish a method to find new treatments while customizing care for current patients.
  • Myeloma At The Movies
    It has been our goal to bring our Patient & Family Seminars to people around the country who might not be able to attend an actual meeting, so we have set up a video lending library....

Important Dates to Remember:
  • Update 2003: Cancer Research and Treatment
    A free public education program featuring presentations in non-technical language by a panel of distinguished cancer experts from Memorial Sloan-Kettering Cancer Center, Columbia Presbyterian Medical Center, the Cancer Institute of New Jersey, Aventis Pharmaceuticals, and the National Cancer Institute. Saturday, February 8, 2003, 9:00 AM-3:00 PM. Admission to the program, including luncheon, is free with advanced registration and tickets required. Register early, as seating is limited.

What's New in Clinical Trial
s:

We are changing the format of this section to better reflect the mission of the Myeloma Minute, namely to bring you the latest information on pertinent topics. So look to What's New in Clinical Trials in the Minute to bring you news about the opening and closing of trials.

However, 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 CenterWatch and EmergingMed. The IMF has entered into partnerships with them 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 material from the National Cancer Institute.

  • There are currently no Revimid studies open and recruiting patients. Phase II trials are closed pending an amendment to the protocol, and will soon reopen. Phase III randomized, placebo-controlled, double blind trials with dexamethasone plus or minus Revimid will soon open at sites throughout North America and Europe. Call the IMF hotline at (800) 452-2873 for details.
  • AstraZeneca's ZD6474, an orally active vascular endothelial growth factor (VEGF) receptor antagonist, is now available in a Phase II trial for patients with relapsed multiple myeloma at Ontario-Hamilton Regional Cancer Centre and London Cancer Care in Ontario, Canada.
  • Novartis's Amdray (PSC 833, valspodar) has been withdrawn from Phase III studies in relapsed or refractory multiple myeloma due to lack of efficacy. Amdray was being developed to inactivate the protein that pumps active drugs out of cancerous cells, making them resistant to cytotoxic therapy.

Exciting Opportunities:

  • Multiple Myeloma Quilt of Courage

    The second quilt is now being pieced together, and we hope to have it up on the web by the end of January. The third quilt is reserved and so we are taking orders for the 4th and final quilt.

Help Us Help Others...
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