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July 18, 2003 Myeloma Minute
What's News
  • She's Banking on Finding a Cure
    IMF President Susie Novis was profiled recently in the Leader's and Success section of the Investor's Business Daily. (In the picture to the left, Susie is being interviewed by IBF writer Michael Mink.)

  • Research award to honor Kyle
    Dr. Robert A. Kyle, currently an internal medicine specialist at the Mayo Clinic in Rochester, Minn, is set to receive a Lifetime Achievement Award from the International Myeloma Foundation. (from the Grand Forks, ND Herald)
  • Second Annual Myeloma Awareness Week!
    Join us as we plan activities for the week of August 10-17, 2003.

  • Gene Helps Cancer Disobey Death Signals
    University of Pennsylvania researchers have discovered a key enzyme, Pim-2, that helps cancer cells ignore the body's commands to self-destruct.The enzyme is overproduced in a range of cancers including leukemia, prostate cancer and multiple myeloma. (from Reuters by way of Yahoo News)

  • FDA Head: U.S. Plans to Speed Cancer Drugs Paying Off
    Input from experts at the National Cancer Institute has helped U.S. regulators review cancer medicines like Velcade more quickly, and they hope to use the idea to speed other drug evaluations. (from Reuters by way of Yahoo News)

  • Genta Receives FDA Fast Track Designation for Genasense(TM) In Chronic Lymphocytic Leukemia.
    Genasense, as readers of the Minute well know, is currently being tested in multiple additional clinical trials, including patients with myeloma. (from Yahoo Finance)
  • Easter Island Cancer Drug
    More than 30 years ago, researchers discovered a bacterial-produced immunosuppressant compound, rapamycin, in soil samples taken from Easter Island. An analog of rapamyscin, CCI-779, is on fast-track development for kidney cancer and is being tested for myeloma. (from WHOI Channel 19 News, Bloomington, IL)

  • AMD-3100 granted orphan drug designation for stem cell transplant in cancer patients
    AMD-3100, in combination with Neupogen, is currently in two Phase II clinical trials in myeloma patients. Orphan drug status entitles a company to incentives including waiver of some fees, access to potential grant funding, and seven years of marketing exclusivity once approved by the FDA. (from 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: I have been recently diagnosed with myeloma. Other than some general fatigue and some pain in my ribs, I feel pretty well. I am beginning a course of thalidomide and dexamethasone. I have always been fairly active (I am in my early 60's and have always played tennis and jogged regularly). What type of exercise do you recommend that I do to stay as strong as possible?

A: The question of exercise for a myeloma patient is an important one. First and foremost, you must discuss any exercise plans with the doctor treating your myeloma and get clearance for anything you plan to do. Because bone involvement is quite common with myeloma; you must take into account the location of involved bones and what type of exercise, if any, is safe. In general, exercise is important for a myeloma patient; it will keep you feeling better physically and psychologically.

Since you are newly diagnosed, you should consider putting any form of strenuous exercise on hold for the first two or three months, or at least until your myeloma is well controlled. Until then, you are at a higher risk for progressive bone disease, infection, and deep vein thrombosis. It is nevertheless important to keep moving. Two of the safest and easiest forms of exercise are walking and swimming. (If you have a catheter in place for chemotherapy, however, you may not be able to swim.)

After about three months of treatment, your doctor will be able to re-evaluate your situation and let you know if the myeloma is sufficiently stabilized to permit more vigorous exercise. A CT or MRI scan might be required to assess your status. The doctor will provide guidelines according to your particular situation and possible limitations.

Any exercise program you undertake at this point should aim to achieve three goals: strength, flexibility, and endurance. Most exercises that increase strength are quite safe, in moderation (e.g. 2- to 5-pound weights). Flexibility exercises are best performed when the muscles are warm, so you should do them at the end of exercising or in warm water (aqua therapy). A personalized yoga program could also be of benefit. Endurance can be achieved with a 15 to 20-minute daily brisk walk. Some patients have been able to work with highly experienced physical therapists to increase and maintain strength and mobility. Such physical therapy should be discussed with your oncologist, who will determine if it is appropriate, write a prescription for it, and recommend a therapist who has experience with myeloma patients, if possible.

As for your tennis and jogging, you may probably resume the tennis, with your doctor's permission. Most doctors feel that jogging is too jarring to the bones, and should be avoided by myeloma patients. Other sports that should be avoided are contact sports (football, basketball, rugby, etc.), biking (mountain or road as opposed to stationary, which is fine), ice-related sports (skiing, ice skating, hockey), water-skiing and ski jumping, and driving in off-road vehicles.

Keep in mind that every patient's situation is different with regard to pre-myeloma fitness, overall health, and how myeloma affects the body. The key to any safe and effective exercise program is careful and regular consultation with your doctor.

What's New in Research:

What's New in Clinical Trials:
  • 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.
  • Phase I Trial of VELCADE and Melphalan. A prospective, open-label, safety and efficacy study of combination treatment with VELCADE and melphalan in patients with relapsed or refractory multiple myeloma. Investigator: James Berenson, MD (310) 556-0185

  • 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
  • New sites added to Revimid study list as of 7/14/03

  • Myeloma Matrix (updated 7/07/03)
    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.

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 mutiple 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.

Wamp Swim-athon
July 19, 2003
West Hartford, CT
Mile High March for Myeloma
August 16, 2003
Lake Arrowhead, CA

Ralph Ferrizzi Memorial Golf Tournament
August 23, 2003
Allentown, PA

Corporate Cup Challenge
August 26, 2003
Naperville, IL

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 SuzanneBattaglia@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-yous, 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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