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May 9, 2003 Myeloma Minute

Get beautiful flowers delivered for Mother's Day and help the IMF!

Order Mother's Day Flowers & Gifts from 1-800-flowers or FTD.com and they will donate a portion of your order to the IMF!

Mother's Day at Adler & Co. Diamonds

Adler & Co. is offering diamonds and diamond Jewelry at wholesale prices to IMF members. Long-term friends of the IMF, the Adlers are donating a part of their proceeds to the Bank on A Cure IMF research project. You can email them at herman@adlerdiamonds.com.

What's News

  • Chemo-Stem Cell Combo Benefits Seen
    Study, covering 401 patients age 65 or younger from the UK and New Zealand, was reported in New England Journal of Medicine. (from CBS News)
  • Vets May Have Had More Radiation Exposure
    Veterans who took part in aboveground nuclear weapons tests a half-century ago were exposed to more radiation than government agencies believed, researchers say--but not in amounts that would qualify many more for compensation. Veterans with any of 21 types of cancer are already automatically granted compensation, and the dose estimates are used to determine payment for veterans with some other illnesses and types of cancer. (from ABC News)

Question of the Week

In each 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 suffer from PERIPHERAL NEUROPATHY as a result of my treatments for myeloma. Can you suggest some ways to cope with this debilitating problem? Is it permanent or reversible?

A. Peripheral neuropathy manifests itself as numbness, weakness, tingling, cramping, or burning pain in the extremities (usually the hands and feet). Deposition of monoclonal protein on nerve tissue can occur with myeloma or MGUS (a non-cancerous condition called monoclonal gammopathy of undetermined significance.) Peripheral neuropathy can also result from myeloma treatment with vincristine and/or thalidomide. Renal failure and amyloid deposition, potential complications of myeloma, can further exacerbate the neuropathy problem. Patients who have shingles (post-herpetic neuralgia) also complain of neuropathic pain that is severe and debilitating. Although the shingles can be treated with Acyclovir, the neuropathy can persist after treatment.

Although there is no cure for peripheral neuropathy, doctors and neuropathy patients have offered a list of vitamins and medications that help people cope with it and lessen the symptoms. Some patients improve when they have removed the source of the problem. For example, patients whose neuropathy is caused by monoclonal protein deposition may improve when treatment for myeloma reduces the amount of monoclonal protein. Other patients improve when they discontinue vincristine or thalidomide therapy. Unfortunately, some patients recover only partially or not at all. Keep in mind that what works for one patient may not work for another. Keep in mind, as well, that as the authors of a recent New England Journal of Medicine article (March 27, 2003) entitled "Painful Sensory Neuropathy" conclude, "Treatment of painful sensory neuropathy presents enormous challenges and is currently inadequate."

  • On almost everyone's list of remedies for peripheral neuropathy is B vitamins. We recommend up to 100 mg per day of vitamin B6. Higher doses of B6 can further damage the nerves. You can also take a vitamin B complex incorporating 100 mg of vitamin B6.
  • Alpha lipoic acid is available at health food stores and has been widely recommended as a remedy for leg cramps. You can start at 200-400 mg per day, and can increase to up to 800 mg per day.
  • Tonic water, because of its quinine content, is also touted as a treatment for leg cramping.
  • Oral tricyclic antidepressants, such as Elavail, Tofranil, Norpramin, and Pamelor, have been widely reported to relieve painful peripheral neuropathy. These versatile drugs have numerous uses other than the treatment of depression. Since these medicines may themselves cause side effects, careful monitoring by a doctor is important. Wellbutrin, an antidepressant with fewer side effects than the tricyclics, has recently been shown to have promise in relieving the pain of peripheral neuropathy.
  • Maureen A. Carling, RN, an accomplished nurse in the Washington, DC area, has published the results of her discovery that a number of drugs in combination, mixed as a cream or gel that is applied to the skin, can be an effective remedy for neuropathic pain. Ms. Carling cautions that patients have a pain assessment done first to establish that it is indeed neuropathic pain that they are experiencing. She further cautions that most patients have more than one type of pain and that each be treated appropriately. All that said, the combination she sent to us is one that she uses most. You should discuss with your doctor whether or not this gel may be appropriate treatment for your pain. The gel must be prescribed by a physician and made up by a compounding pharmacist.

    Here is the formula:

Clonidine 0.2%
Amitriptyline 3-5%
Guaifenesin 2-3%
Ketoprofen 5-10%

The above are mixed into a pleuronic lecithin organogel. The gel is applied as a thin film over the site of the pain. Then, the location on the spine where the nerve root is located is traced around to the back and the site is marked. (The doctor can help with this.) A small amount of the gel (about the size of a green pea) is applied at spinal level. The gel is applied 2-3 times daily initially. Once the pain is under control, it can be reduced to once or twice daily. Ms. Carling recommends that you start with the lower percentage dosages; for example, begin with you first tube of gel at 3% amitriptyline, 2% guiafenesin, and 5% ketoprofen mixed with the clonidine. Reassess after five days. If the pain has not decreased substantially, have the next tube made up at the higher dose. Intermediate dosages may be helpful for fine-tuning. It should be possible to determine within a month if this gel will be effective for you.

  • You may want to contact the Neuropathy Association at 800-247-6968, or via the Internet at www.neuropathy.org. Like the IMF, the Neuropathy Association is patient-based and non-profit, and provides patient support and education.

What's New in Myeloma Research:
  • Therapeutic remodeling of myeloma chromatin
    IMF Scientific Advisor P. Leif Bergsagel is author of this "inside Blood" article.
    He reviews a study that uses a colon cancer cell line to demonstrate that the primary event causing gene silencing appears to be aberrant histone methylation, which is followed subsequently by histone deacetylation and cytosine methylation.
  • Molecular sequelae of histone deacetylase inhibition in human malignant B

    Nicholas Mitsiades, Constantine S. Mitsiades, Paul G. Richardson, Ciaran McMullan, Vassiliki Poulaki, Galinos Fanourakis, Robert Schlossman, Dharminder Chauhan, Nikhil C. Munshi, Teru Hideshima, Victoria M. Richon, Paul A. Marks, and IMF Scientific Advisor Kenneth C. Anderson
    Study characterized the effect of suberoylanilide hydroxamic acid (SAHA), the prototype of a series of hydroxamic acid-based HDAC inhibitors, in cell lines and patient cells from B-cell malignancies, including multiple myeloma.

What's New in Clinical Trials:
  • New trial opens with VELCADE as front-line therapy
    "Phase II Trial of PS-341 Alone and in Combination with Dexamethasone in Previously Untreated Multiple Myeloma Patients." This is an investigator-initiated trial that is currently enrolling patients at the following four sites:
    • Alta Bates Comprehensive Cancer Center; Berkeley, Ca. Contact: Jeffrey Wolf, M.D. - (510)-204-1591
    • Cedars-Sinai Comprehensive Cancer Center; Los Angeles, Ca. Contact: Brian Durie, M.D. - (310)-423-0720
    • Comprehensive Cancer Center of the Desert; Palm Desert, Ca. Contact: Larry Leichman, M.D. - (760)-416-4860
    • St. Vincent's Comprehensive Cancer Center; New York City, NY. Contact: Sundar Jagannath, M.D. - (212)-604-6068

For further information, please contact the IMF hotline at (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.

Advocacy Update:
  • Cancer Research Advocates Must Be Vocal to Reverse Funding Trends
    With public attention focused away from domestic concerns over most of the past two years, congressional and administration attention to medical research funding—and funding for cancer research in particular—has been overshadowed....So while Congress technically fulfilled its promise to double the NIH budget over five years, it did so by increasing funds for the newly created post-September 11 bioterrorism priorities and at the expense of other medical research.

Quality of Life Update:
  • Making Healthy Decisions about Complementary Medicine
    More and more people are deciding to use complementary medicine to stay healthy or to treat illness. Too often consumers base their decisions about complementary medicine on unrealistic expectations or inadequate information.
  • Support Group Leader Retreat - June 27-29, 2003
    The IMF understands that support group leaders need support too! That's why we're pleased to once again offer this exciting, supportive program at Duke University in Raleigh, NC. The Leader Retreat is designed to help group leaders from across the country and around the world get together and exchange ideas, suggestions and success stories, while learning new skills and making new friends.

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.

Upcoming Seminars and Conferences:
  • IXth Annual International Workshop On Multiple Myeloma
    May 23-27, 2003
    Salamanca, Spain
    Every two years, the myeloma scientific community gathers from around the world to discuss the state of the art in myeloma treatment and research. This year they are meeting in the ancient and beautiful city of Salamanca.

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.

4th Annual JC Invitation Golf Tournament
May 17, 2003
Wapicada Golf Course, Sauk Rapids, MN
From Handel to Hawkins
June 8, 2003
Bronx, NY
Robert Cait at the Laugh Factory
June 11, 2003
West Hollywood, CA
New! Register online for this event.
"Hair Cares"
June 22, 2003
Curries Hair, Skin & Nail Salon, Glen Mills, PA

5th Annual Corporate Challenge
June 30, 2003
Stamford, CT

Multiple Musicians Against Multiple Myeloma
July 6, 2003
Sea Cliff, NY
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
    People often call the IMF and ask "What can I do to help?" The IMF is delighted to announce MAIL FOR THE CURE, a simple but very powerful concept by which YOU can make a big difference.
    • 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.
    • Multiple Myeloma Quilt of Courage
      The third quilt is on its way to the quilter to be pieced together. Several people who reserved squares for this quilt did not return their squares; therefore, we have had to move some people who reserved squares for the 4th quilt up to the 3rd. This leaves some squares still available for the 4th quilt so if you're interested, please email Suzanne Battaglia (sbattaglia@myeloma.org).

    • The following people should keep their eyes open for the 3rd quilt to appear on the web. They are:

    Jeanne Bechtel
    Vanessa Bernstein
    Harriet Bertsche
    Lynn Betts
    Anna Cazale
    Leslie Cohen
    Samona Creasy
    Susan Emery

    Keith Garber
    Hal Gleason
    Pat Hall
    Anne Heutlinger
    Barbara Jewell
    Samara Krugman
    Christine Meeks
    Kim Patocka

    Serafin Salgado
    Christine Storms
    Judy Van Schoyck
    Laura Schultz
    Delfina Theimer
    Patricia Wascher
    Isabelle Weinberg
    Tracy Wright

    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.
    • 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.
    • 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 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.

    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.

    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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