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July 26, 2003 Myeloma Minute
What's News
  • "CRAB" Crawls Into Importance
    The IMF Scientific Advisors recently developed new diagnostic criteria for myeloma, emphasizing the clinical features of progressive disease associated with active myeloma and identified as "CRAB" features. The intent is to distinguish between active myeloma and the precursor states MGUS and smoldering/indolent myeloma.

  • Myeloma Bone Disease - Update 2003
    An excellent new overview of myeloma bone disease and its treatment by IMF Scientific Advisor Gregory R. Mundy, MD and Babatunde O. Oyajobi, MB, ChB, PhD

  • It's not too late to register for the Atlanta Patient & Family Interactive Seminar
    August 15-16, 2003
    Recently diagnosed and in search of comprehensive information? Want to know about the state of the art in treatment? Have questions that you just can't get answered? No matter what your need, the IMF has put together a panel of experts that can help you get the best and latest information on everything from baseline treatment to clinical trials.

  • Celgene Aims For Fast FDA Approval
    Until now, Celgene expected to apply for approval for Revimid based on using it to treat multiple myeloma. The new approval strategy will focus on a group of blood malignancies called myelodysplastic syndromes (MDS), and particularly on patients with a specific genetic deletion called 5q- syndrome. (from Forbes)

  • Lance Armstrong Foundation Supports Global Cancer Survivorship Initiatives
    The Foundation is working with the President's Cancer Panel. They found that in Europe, unlike in the United States, talking about cancer remains taboo; representatives of "survivorship," like Armstrong, are far from customary; information about cancer is difficult to find; and discussions about cancer, its treatment options and follow-up requirements generally are not part of the doctor/patient interaction. (from BusinessWire)

  • Canadians Ride Bus to United States to get Health Services
    As Americans cross the border to buy discounted pharmaceuticals, a group of Canadians is travelling by bus to Bangor, Maine to receive health services not readily available to them at home. (from Canada NewsWire)

Question of the Week

In this issue of the Myeloma Minute, we feature an important question that has been recently addressed to the IMF Hotline. Our answers are not intended as medical advice, but as information to discuss with your doctor. If you have further questions or comments about any of the issues raised this week or in continuing weeks, please write us care of the Myeloma Minute.

Q: When I was first diagnosed with myeloma, I had a horrible experience with bone marrow biopsy. It was extremely painful and I shudder at the thought that I will have to endure this procedure again. Can you offer any suggestions that would make this procedure less of an ordeal?

A: A bone marrow biopsy requires several steps which we will outline below. In order to make sure you have the best possible experience, you should discuss these steps with your doctor before you have the procedure.

  1. First, consider the use of a rapid acting sedative as general preparation for the procedure. There are several options your doctor can offer. For example, a simple option is to use sublingual (under the tongue) or I.V./I.M. (intravenous or intramuscular) Ativan (lorazepam) in a small dose to reduce anxiety.

  2. The doctor will position you on either your stomach or your side, depending on what area he is going to biopsy.

  3. The doctor will anesthetize the biopsy site. This entails two critical points. First, the doctor must ensure that the surface of the bone (periostium) has been anesthetized. Second, it is important to wait a few minutes for the anesthetic to take full effect, and not immediately do the biopsy. (This can require anywhere from 5 to 15 minutes).

  4. The doctor will perform the biopsy by inserting the needle into the bone marrow. He should attempt to minimize needle manipulations in order to maximize your comfort during the procedure. Newer specimen capturing needles are now available that help your doctor reduce needle movement during the procedure and therefore reduce possible discomfort. One such needle is the Goldenberg Snarecoil, developed by Dr. Alec Goldenberg, a practicing hematologist in New York City who holds the position of Clinical Associate Professor of Medicine at NYU Medical School and is the Director of the Hematology Clinic at Bellevue Hospital. The biopsy needle developed by Dr. Goldenberg features a device that reliably delivers clean, intact biopsy cores without redirecting or manipulating the needle after it has been inserted. Patients generally feel most discomfort when the inserted needle is moved; the Snarecoil eliminates the need for this type of needle manipulation.

In addition to the issues of comfort discussed above, it is also important for the doctor to get a good specimen. A number of guidelines can help your doctor provide the pathologist with a good specimen. Some doctors have established criteria to determine if a bone marrow biopsy specimen is adequate. Dr. Bishop from the Christie Hospital in Britain suggests that a specimen should be at least 1.6 cm in length to be considered adequate.(J Clin Pathol 1992). In addition a specimen should not be significantly disrupted during the biopsy procedure. Achieving these specimen goals requires penetrating sufficiently into the marrow space.

The bone marrow biopsy procedure helps your doctor establish a diagnosis of multiple myeloma. In addition there may be times that it is appropriate to repeat the procedure to help assess the adequacy of your treatments, to estimate the myeloma tumor burden, and to investigate unexpected changes in the blood counts. It is also important to mention that sometimes, if the bone marrow has a high percentage of plasma cells, a bone marrow aspirate (a sample of bone marrow gathered in a syringe) rather than a full biopsy specimen, may be sufficient.

Overall, the bone marrow biopsy procedure should not be a source of marked anxiety for the patient and should provide your doctor and pathologist with adequate specimens to help guide your treatment. As always, this often requires good communication between patient and doctor.

What's New in Research:

What's New in Clinical Trials:
  • Phase I Trial of VELCADE and Thalidomide. Phase I exploratory study of combination VELCADE and Thalidomide in refractory multiple myeloma. Investigator: Bart Barlogie, MD, PhD (510) 686-6000

  • Phase I/II Trial of VELCADE + Adriamycin + Dexamethasone. (UK only) Phase I/II study to assess the safety, efficacy, and tolerability of combination therapy with VELCADE, Adriamycin, and dexamethasone (PAD) as primary therapy for patients with multiple myeloma. Investigator: Jamie Cavanaugh, MD +440 207 601 8202
  • Myeloma Matrix (updated 7/26/03)
    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.

  • Cancer Trials Support Unit: A Web Based System That Offers Efficient and Effective Tools for Clinical Trials Management.
    The Cancer Trials Support Unit (CTSU) is an NCI funded program to facilitate participation (by both patients and physicians) in phase III NCI sponsored Cancer treatment trials.

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.

Quality of Life Update:

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 multiple myeloma patients and their families and friends, let us know.

Advocacy Update:
  • Congressional Update
    Bucking the trend of delay and ultimate success of the previous years, this year the congressional appropriations committees have moved to complete their spending packages well in advance of the end of the fiscal year on September 30. Cancer issues have also been a major part of the Medicare reform bills that are expected to pass later this year. However, these quick, decisive actions promise to slow research funding and potentially limit access to quality cancer care. More...

  • Friends of Cancer Research Hosts Cancer Advocacy Study Group Dinner at ASCO with Aventis UK
    The UK contingency included Members of Parliament, government health officials, and patient-group leaders, and the US delegation was comprised of patient advocacy leaders from a broad spectrum of cancer patient groups, including the IMF's Greg Brozeit, president of a cancer center, as well as director of public policy at ASCO. (Link takes you to the Friends of Cancer Research Newsletter for June 2003 where article and pictures are available.)

Upcoming Seminars and Conferences:
Upcoming Fundraisers:

FUNdraising Made Easy
You know you want to do something, but deciding on what to do can be confusing. The IMF can help.

Mile High March for Myeloma
August 16, 2003
Lake Arrowhead, CA
Ralph Ferrizzi Memorial Golf Tournament
August 23, 2003
Allentown, PA

Exciting Opportunities
  • Robert Kyle Lifetime Achievement Awards Dinner
    August 2, 2003
    Rochester, MN

    The International Myeloma Foundation is proud to present its first Robert A. Kyle Lifetime Achievement Award to Robert A. Kyle, M.D., Professor of Medicine & Laboratory Medicine, Mayo Clinic, in recognition for his outstanding life work, clinically and in research, in the field of myeloma. The award will be presented in subsequent years to honor other professionals for their work in the field.
  • Ribbon of Hope Making A World of Difference Anniversary Gala
    October 4, 2003
    Paul Allen's Experience Music Project Museum in Seattle, WA

    The evening promises to be the best ever, both creatively and financially! The EMP is Seattle's most unique architectural wonder. The Frank O. Gehry-designed building houses a new interactive museum that combines performance space, technology and revolutionary architecture in a facility created to celebrate the heritage and anticipate the future of American popular music.

  • Retreat with Marilyn Youngbird and Dr. Lewis Mehl-Madrona
    August 11-18, 2003
    A one week retreat at the beautiful Sunstone Healing Center in Tucson, Arizona, with Native American healer, Marilyn Youngbird and Dr. Lewis Mehl-Madrona, who spoke at the Los Angeles Patient & Family Seminar.

  • Third Multiple Myeloma Quilt of Courage is Online
    The third quilt is finished and on the web. Like the two before it, it is both beautiful and moving. Take a look for yourself.

    Those of you who have ordered quilt squares for the 4th quilt and have not yet returned them, please do so at your earliest convenience. We cannot put the quilt together and up on the web site until all the squares are returned. If you are not able to finish your square, please advise Suzanne at sbattaglia@myeloma.org so that she can give members on the waiting list the space she is holding for you.

Items of Interest:
    BANK ON A CURE™ is an innovative and powerful concept designed to establish a method to find new treatments for multiple myeloma and other related diseases as well as the possibility of new cures, while customizing care for current patients.
  • International Prognostic Index
    The International Myeloma Foundation is proud to sponsor the International Prognostic Index (IPI) Classification for Multiple Myeloma. Nearly twenty myeloma institutions from around the world are collaborating to create an updated staging system for multiple myeloma.
  • 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.
  • MMInteractive
    An exciting new way for myeloma patients to get involved at patient seminars.
  • 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. New tapes have recently been added from the Seattle Patient & Family Seminar.
  • The Catlett Card Series
    The Catlett Cards are designed by Irma Catlett in memory of her husband Lou. The stunning pictures on these cards chronicle their travels together and honor Lou and the life they shared. Blank on the inside, they are perfect for thank-you's, birthdays, anniversaries, and just general correspondence. All proceeds go to support the programs of the IMF.
  • IMFers Esther and Herman Adler, of Adler & Company Jewelers in Los Angeles are continuing their generous offer to help the IMF. Buy beautiful jewelry at wholesale prices and—if you tell them you are an IMFer—a portion of the proceeds will be donated to the IMF. They make it so easy, too. They can work from digital pictures if you cannot meet with them, and they have a return policy if you are not completely satisfied. Call them at 213-624-1945 for more information.

Shop for the Cure!

Many of the internet's most popular merchants will donate a portion of your purchases to the IMF if you enter their sites using the links on our Shop For The Cure page. You can also use the special shortcut URLs listed below:

So, Shop For The Cure by using these links to the same get great service and low prices you're used to while helping support the IMF!

Help Us Help Others...
As a non-profit organization, the IMF is completely dependent on the support of our members. Please consider showing your support by making a tax-deductible donation today. 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. We sincerely thank you for your support.

Tell A Friend...
The Myeloma Minute is a great way to stay abreast of the latest developments within the myeloma community. We hope you'll share this information with friends, family members and physicians and encourage them to sign up for their own copy by forwarding this message. New users can register by clicking here.

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