We are international

January 20, 2004 Myeloma Minute
What's in the News
  • Study: 2 transplants improve bone cancer survival rate
    An unusually intensive assault myeloma -- using two rounds of high-dose chemotherapy followed each time by a stem cell transplant -- appears to double patients' long-term chances of survival, a study found. (from the Boston Globe)

  • Scientist finds how cancer triggers bone disease
    Working under the tutelage of renowned myeloma researcher (and IMF Scientific Advisor) Dr. Bart Barlogie, Arkansas scientist John Shaughnessy Jr. has discovered that a human gene is used by at least one type of cancer to cause bone disease, and treatments could be developed to stifle the combination's destructive powers. (from the Baxter Bulletin)

  • Callisto Pharmaceuticals Granted Orphan Drug Designation for Atiprimod for Multiple Myeloma Indication
    Atiprimod has unique properties, centering on its ability to inhibit angiogenesis and proliferation of cancer cells by inhibiting production of vascular endothelial growth factor (VEGF) and Interleukin-6 (IL-6). (from MarketWire)

  • Japan bars 30% of drugs used in U.S. for cancer.
    About 30 percent of the anticancer drugs used in the United States have not been approved by the Japanese government and thus cannot be administered to patients in Japan, a group of medical researchers at Kyoto University said.

    According to the study, 31 of the 101 anticancer drugs used in the United States have yet to be approved by the Health, Labor and Welfare Ministry. Of the 68 drugs commonly used in the United States to alleviate cancer-related pain and mental distress, 27 have not been approved in Japan. Among the anticancer drugs yet to be approved in Japan is thalidomide.

    The latest findings are expected to prompt the government to make rapid improvements to the ministry's inefficient clinical testing and drug approval processes. (from the Daily Yomiuri)

  • Coroner Investigates Dockworker's Death
    Mr Kennington, from Estover in Plymouth, had launched a legal battle against the Ministry of Defence before his death on December 12, believing his myeloma may have been caused by his 21-year-old career at the dockyard.(from the Western Morning News)

  • Foundation seeks 'investors' when it funds disease research
    The foundation funded the Mayo Clinic's Dr. Vincent Rajkumar, who was unrecognized when the Goldman Foundation discovered him in 1999. The foundation provided $300,000 to start work on Rajkumar's vision. (from the Chicago Sun Times)

Who's in the News

What's New in Myeloma Research:

  • The Role of the Wnt-Signaling Antagonist DKK1 in the Development of Osteolytic Lesions in Multiple Myeloma
    Erming Tian, B.S., Fenghuang Zhan, Ph.D., Ronald Walker, M.D., Erik Rasmussen, M.S., Yupo Ma, M.D., Ph.D., IMF Scientific Advisor Bart Barlogie, M.D., Ph.D., and John D. Shaughnessy, Jr., Ph.D.
    The production of DKK1, an inhibitor of osteoblast differentiation, by myeloma cells is associated with the presence of lytic bone lesions in patients with multiple myeloma. (from the New England Journal of Medicine)

  • Chemotherapy-induced toxic leukoencephalopathy causes a wide range of symptoms: a series of four autopsies.
    Moore-Maxwell CA, Datto MB, Hulette CM.
    Duke Universrity researchers report the
    importance of considering toxic leukoencephalopathy as an etiology of acute neurologic deterioration following high-dose chemotherapy

  • Destruction of molar roots by metastasis of multiple myeloma
    Yavuz Anacak, Serra Kamer, Ayhan Donmez and Ayfer Haydaroglu
    Researchers found that involvement in jaws is rare in myeloma patients.

  • Single versus Double Autologous Stem-Cell Transplantation for Multiple Myeloma
    Michel Attal, M.D., IMF Scientific Advisor Jean-Luc Harousseau, M.D., Thierry Facon, M.D., François Guilhot, M.D., Chantal Doyen, M.D., Jean-Gabriel Fuzibet, M.D., Mathieu Monconduit, M.D., Cyrille Hulin, M.D., Denis Caillot, M.D., Reda Bouabdallah, M.D., Laurent Voillat, M.D., Jean-Jacques Sotto, M.D., Bernard Grosbois, M.D., Regis Bataille, M.D., for the InterGroupe Francophone du Myélome
    As compared with a single autologous stem-cell transplantation after high-dose chemotherapy, double transplantation improves overall survival among patients with myeloma, especially those who do not have a very good partial response after undergoing one transplantation. (from the New England Journal of Medicine)

  • Question of the Week:

    Q: I have been diagnosed with a solitary plasmacytoma of the bone and have received a course of radiation therapy to the site.  Can you tell me if I should have further treatment, what the follow-up should be, and what is the likelihood is that I will develop multiple myeloma?

    A: The key point here is to determine if what you have is truly a solitary plasmacytoma of the bone (SPB).  A solitary plasmacytoma of the bone (SPB) is defined as a collection of malignant plasma cells found in a single location in the bone without evidence of disease elsewhere.  If, in fact, you have a true SPB, your chances of cure with radiation (3500 cGy) therapy are quite good.  When a patient is treated with attempted curative radiotherapy for a SPB and then goes on within a few years to develop multiple myeloma (MM), the major reason for this failure is that the patient had underlying MM all along and did not have a true SPB.  Thus the failure was not that of the radiation therapy, but that the patient was not accurately diagnosed.  We will try to answer your question more fully below.

    Diagnosis of SPB
    In the past, it has been difficult to assess whether a patient who presents with what appears to be a SPB actually has some small or hidden amount of systemic myeloma.  Blood work can determine the amount, if any, of the tell-tale myeloma protein.  A high amount of such protein would point towards the presence of multiple plasmacytomata or multiple myeloma (MM).  The term MM is used if there is, in addition to plasmacytomata, an increase in plasma cells in the routine bone marrow.  In addition, the patient should be checked for other relevant indicators of MM such as low hemoglobin, elevated serum calcium, and elevated serum creatinine.  Another important diagnostic factor is the presence or absence of other bone lesions.  In the past, a skeletal survey was used to make this determination.  However, negative skeletal surveys alone cannot rule out other bone lesions because such surveys are not sufficiently accurate.  With the advent of both MRI and/or FDG PET scanning, doctors can better determine if the patient has more wide-spread marrow involvement.  The absence of such involvement after these more sensitive tests would give the doctor (and patient!) more confidence that there is no occult MM.

    Adjuvant Therapy (additional therapy such as chemotherapy, steroids, thalidomide, or alpha-interferon after radiation)
    Studies done in the 1980s and 1990s evaluating the benefit of post-radiation therapy with various chemotherapies in an effort to reduce the chance of, or time to, new disease were inconclusive.  The prevailing view at this time is that adjuvant chemotherapy should not be given for patients with SPB.  However, bisphosphonate therapy can be considered to help heal the bone that was damaged by the plasmacytoma.

    Follow-up Intervals and Evaluations
    Even in the absence of adjuvant (additional) therapy for SPB, patients should be monitored regularly.  It may take up to a year (or occasionally even longer) for the effects of the radiation therapy to be fully demonstrated in dropping monoclonal protein levels.  During that time , you and your doctor should determine a schedule of visits every two or three months to evaluate your status.  As time goes on, if you remain disease-free, this schedule can be lengthened to, for example, 4-6 month intervals.  Such close monitoring will allow the doctor to find any sign of a recurrence or development of MM at an earlier point when treatment options are greater.

    Likelihood of Curing SPB
    As stated above, the important issue is accurate diagnosis.  Local control of an SPB has been achieved in about 90% of cases.  Disease-free survival of 10 years has been reported to be from 16% to 46%, depending on the study.  This discrepancy is most likely a result of the fact that not all of the patients in each study had true SPBs, but rather had underlying MM.  There have also been studies looking at what prognostic factors can be identified that will predict which patients will be cured and which patients will ultimately relapse and develop MM.  The following factors have been identified in at least one study as increasing the likelihood of relapse: osteopenia (reduced bone density, perhaps indicating early evidence of MM), low levels of uninvolved immunoglobulins (again, this probably means the patient actually had occult MM at diagnosis), age over 60, and/or SPB on axial (head and trunk) skeleton region.  In patients whose monoclonal protein persists after radiation therapy, the likelihood of relapse is greater; conversely, those whose monoclonal protein disappears after local radiotherapy are less likely to relapse.

    Overall Outlook
    As discussed above, as our understanding of how plasma cell cancers develop increases, and as our ability to accurately diagnosis and stage plasmacytomas and MM improves, doctors are better able to guide patients in making treatment decisions.  In the near future, we will be able to accurately assess whether a patient has a true SPB and can reasonably expect to be cured with simple radiation therapy.  In addition, if the patient actually has some underlying myeloma, the doctor and patient will know to be more vigilant with follow-up testing.  Studies can better be designed to find agents that could prevent this underlying myeloma from developing into more active or wide-spread disease.

    Dimopoulos M et al. Solitary plasmacytoma of bone and asymptomatic multiple myeloma.  BLOOD, 15 September 2000. Volume 96, no.6: 2037-2044.

    Wilder RB et al. Persistence of myeloma protein for more than one year after radiotherapy is an adverse prognostic factor in solitary plasmacytoma of bone.  Cancer 2002 Mar 1; 94(5): 1532-37.

    Ozashin M et al. Outcome and patterns of failure in solitary plasmacytoma: a muticenter Rare Cancer Network study on 258 patients. Proc Am Soc Clin Oncol 22, 2003, abstract 2421: 602.

    What's New in Clinical Trials:
    (Drugs listed In alphabetical order)
    • The Myeloma Matrix updated 01/05/04
      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.

    • SAHA (suberoylanilide hydroxamic acid)
      • Phase I trial of histone deacetylase inhibitor for treatment of advanced multiple myeloma.

    • 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 materials from the National Cancer Institute.

    Advocacy Update:
    • One Voice Against Cancer Advocacy Training in Los Angeles
      One Voice Against Cancer (OVAC) will hold a day-long advocacy training session in Los Angeles , CA area on Saturday, February 21 in the Universal City area.  There is no charge to participate.

      The session will focus on advocacy in support federal budget and appropriations issues including funding for the National Cancer Institute and the Centers for Disease Control and Prevention cancer control programs.  Advocates from other cancer groups will also participate.

      If you are interested in attending, please contact Greg Brozeit at greg.brozeit@sbcglobal.net or 330-865-0046.

    • One Voice Against Cancer Lobby Day Set for Washington , DC
      The 4th annual One Voice Against Cancer Lobby Day will be held on April 19-20 in Washington , DC .  The location of the training day will be announced in a future edition of the Myeloma Minute.

      If you are interested in attending or want further information, please contact Greg Brozeit at greg.brozeit@sbcglobal.net or 330-865-0046.

    • Quality of Cancer Care and Medicare Reform
      The IMF is interested in determining how the recently enacted Medicare reform legislation is impacting the quality of cancer care services.

      Provisions of the law affecting drug reimbursements for oncology drugs went into effect on January 1, 2004 The IMF is gathering information about the impact these rules have on access to quality care for cancer patients in order to apprise Congress of the consequences.  We will use this information to support any possible modifications to the law in order to ensure quality of care for all cancer patients.

      Some of the adverse things that may happen include:
      • Oncology groups closing some satellite community offices.
      • Reductions in the numbers of support staff available at some physician offices
      • Patients being referred to hospital outpatient settings for certain types of drug therapy previously given in-office.
      • Patients being switched from (or off) some drugs that are no longer commercially profitable for physicians.

    Please contact Greg Brozeit (greg.brozeit@sbcglobal.net), advocacy consultant to the IMF if you are aware of these or other issues as a result of the new Medicare rules.

    Quality of Life Update:

    • Feasibility of exercise during treatment for multiple myeloma.
      Coleman EA, Coon S, Hall-Barrow J, Richards K, Gaylor D, Stewart B.
      UAMS College of Nursing researchers find an individualized exercise program for patients receiving aggressive treatment for myeloma may be effective for decreasing fatigue and mood disturbance, and for improving sleep.

    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. This year, our members really rallied 'round the cause, picked up the gauntlet, and raised a lot of money for myeloma research and programs.

    We are already getting calls from new members who want to join in the effort and hold an event in 2004. Suzanne Battaglia is waiting for your call. She is here to help you plan and execute your event, so please write, call or email (SBattaglia@myeloma.org) so that you can get on our Calendar of Events!

    See what you can do in your community to help further the goal of finding the cure!

  • Diane Jette is running the Paris Marathon to support the IMF.
    Diane Jette's mother and stepfather both have myeloma.And so she is running on April 4, 2004 in their honor to support the work of the IMF. Read her story...

  • Third Annual Multiple Musicians Against Multiple Myeloma
    June 11, 2004
    Long Island, NY

  • Kathy McCormick Memorial Golf Tournament
    July 26, 2004
    Hampstead, MD

    Exciting Opportunities

    Items of Interest:
    • The National Cancer Institute (NCI) Office of Education and Special Initiatives is looking for patients, family caregivers, and physicians who are interested in participating in telephone focus groups and in-depth interviews. Payment will be provided to all participants.
      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.

    • 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.

    • HealthTalk's Multiple Myeloma Education Network
      The latest interview is Dr. Durie interviewing Dr. Rajkumar about promising IMF Clinical Trials.

    Be Part of 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 IMF page. You can also use the special shortcut URLs listed below:

    So, Be Part of 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.
  •  related articles