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April 19, 2003 Myeloma Minute

What's News
  • Geron patents telomerase inhibitor GRN163
    Geron was the first to clone the RNA component of human telomerase," noted Geron's VP of intellectual property, "and we have previously been granted patents for that RNA and oligonucleotide compounds based on its sequence. This latest patent is a significant addition to our portfolio because it explicitly covers the use of those oligonucleotides to treat patients. (from Business Wire)
  • Latest Cancer Statistics Released by Canadian Cancer Society
    Although cancer death rates for both men and women and cancer incidence rates for men have dropped in the last 15 years, thanks to the aging population, individual new cases of cancer are expected to increase by as much as 70% over the next 15 years. (from Canada NewsWire)
    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.

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. My father-in-law has myeloma and may be a candidate for stem cell transplant. I am pregnant and will soon be delivering the baby. Should I have the umbilical cord blood stem cells stored for his transplant?

A. Let's provide a bit of background information, and then you will better understand the answer to the question. The standard type of transplant used for myeloma patients under 65 years of age involves harvesting and then reinfusing the patient's own stem cells after high-dose chemotherapy. This is called an autologous transplant, with "auto" referring to "self," the source of the stem cells. This procedure is generally well tolerated by myeloma patients and on average, provides a remission of from 18 to 36 months.

Transplantation of stem cells from a matched donor is called "allogeneic transplantation," and its use in myeloma patients is still considered experimental. Because they are more fragile in the transplant setting than patients with other hematologic cancers, myeloma patients almost never undergo full allogeneic transplant with high-dose chemotherapy because the risk of death is considered too high. Instead, researchers have developed the "mini-allo," a procedure in which lowered doses of chemotherapy are given to a patient prior to an infusion of stem cells from a matched sibling donor. The mini-allo is best performed on a patient with a low tumor burden, so it generally follows within three to six months after an autologous stem cell transplant. The desired result is to produce just enough graft versus host disease (GVHD) to allow the donor stem cells to fight the myeloma. Too much graft versus host disease can kill the host, or leave the host debilitated. That is why in most cases, only the stem cells of a perfectly matched brother or sister can be used. Even then, clinical trials of mini-allo have reported treatment-related mortality (death) as a result of GVHD to have occurred in 12-17% of patients involved in the studies. We don't have long-term data on the patients who have had a mini-allo because it is still a relatively new procedure, but we are waiting for their follow-up data with interest.

With this information as background, you will better understand the answer to your question. Umbilical cord blood is used in allogeneic transplantation, but there are two problems:

  1. The number of stem cells in an umbilical cord is too low to supply what is needed for an adult transplant patient. Umbilical cord blood has been largely confined to use in pediatric transplants.

  2. It is highly doubtful that a grandchild would be an HLA match (a system of genetically matching blood) for a grandparent. If the HLA match is not exact, then the risk of GVHD is increased, and the risk of death is increased.

The use of umbilical cord blood in the allogeneic transplant setting is still, therefore, experimental. There are currently two clinical trials underway using umbilical cord blood for allogeneic transplants in patients with hematologic cancers; in one trial they are using the blood from 2 to 5 cords for one adult, and in the other, they are using cord blood augmented by placental blood. In addition, research is ongoing to improve technology which will expand the number of stem cells that can be utilized in a single cord so that the number will be sufficient for an adult.

If you wish to store the blood "just in case" for the future, there are private firms that provide this service. You may also wish to donate the cord to the Red Cross.

What's New in Myeloma Research:
Advocacy Update:
  • Dan Smith, Chair of One Voice Against Cancer, was the guest last Sunday on "The Group Room," a weekly syndicated radio call-in show for the cancer community. The show is hosted by Selma Schimmel, a breast cancer survivor and CEO of Vital Options, a cancer communications, support, and advocacy organization. During the show, listeners were urged to send a letter to their Representative and Senators asking for their support for the OVAC agenda.

What's New in Clinical 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:
  • Importance of Faith on Medical Decisions Regarding Cancer Care
    Gerard A. Silvestri, Sommer Knittig, James S. Zoller, Paul J. Nietert
    For some, faith is an important factor in medical decision making, more so than even the efficacy of treatment. (from Journal of Clinical Oncology, Vol 21, Issue 7 (April), 2003: 1379-1382)
  • Touching them all
    San Jose State baseball coach Sam Piraro's moving story
    (from the San Jose Mercury News)
  • Caringbridge.org
    CaringBridge is a nonprofit organization offering free web pages to keep friends and family - your caring community - in touch and informed during your treatment. Started in 1997, this year it will host more than 8,000 personalized CaringBridge pages, with more than 20 million visits, and more than a million guestbook entries.
  • Special Myeloma Support Group Meeting - April 26 - El Segundo, California
    We are very pleased to have Dr. Robert Vescio as the speaker at our meeting. Dr. Vescio is a highly regarded myeloma specialist at Cedars-Sinai Comprehensive Cancer Center. Among other topics, he will be discussing Thalomid, a drug produced by Celgene Corporation, which is used by many myeloma patients. He will also discuss other drugs in clinical trials as well as the role of stem cell transplants in myeloma treatment.
    • Date: Saturday, April 26
    • Time: 10:15 am to 12:15 pm
    • Place: Joslyn Center, 339 Sheldon Street, El Segundo
      This is a senior center located in a large recreation park just east of downtown El Segundo. A key intersection is Sepulveda and Grand Avenue, about a mile south of LAX. The Joslyn Center is west of Sepulveda and one block north of Grand Avenue.

Refreshments for this meeting are provided by Susana Lee in memory of her
father, Yu Sang Lee, who passed away October 19 at the age of 83.

For further information, contact Janet Johnson (310) 540-8653/email:

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.

5th Annual Yard Sale for Myeloma Research
April 18-19, 2003
Ocala, FL
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
"Green Eggs, No Ham"
June 11, 2003
West Hollywood, CA

"Hair Cares"
June 22, 2003
Curries Hair, Skin & Nail Salon, Glen Mills, PA

5th Annual Corporate Challenge
June 30, 2003
Stamford, CT
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
  • On Friday, April 25, from 6:00 pm - 9:00 pm, F8 Fine Art Gallery in Austin will host the state launch of ZACK CARR with a book signing, reception, and exhibition of the art of Zack Carr featuring Zack Carr life drawings. The Zack Carr Foundation gratefully appreciates donations to the International Myeloma Foundation in memory of Zack. F8 Fine Art Gallery is located at 1137 West 6th Street. For more information, please contact Amy Griffin at fineart@ktc.com.

Exciting Opportunities
  • The Catlett Card Series
    The Catlett Cards are designed by Irma Catlett in memory of her husband Lou, who lost his battle with myeloma in 2001. The stunning pictures on these cards chronicle their travels together and honor Lou and the life they shared. It is Irma's hope that the cards bring cheer to all who view them. All proceeds go to support the programs of the IMF.
  • 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
Patricia Wascher
Isabelle Weinberg
Tracy Wright

  • Time for Mother's Day! You can make your mother a very happy woman with the help of IMFers Esther and Herman Adler, of Adler & Company Jewelers in Los Angeles. 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.

Items of Interest:
  • 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.
  • 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.
  • International Prognostic Index
    The International Myeloma Foundation is proud to be the sole sponsor for 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.
  • 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....

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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