We are international

2001 has been a banner year for myeloma awareness and the IMF is very much involved. The IMF is committed to helping myeloma patients wherever they live and to promoting myeloma research no matter which country the investigator is from. With the opening of the IMF(UK) office in 1997, myeloma awareness in the UK as well as continental Europe increased substantially. This has led to numerous new opportunities. Here, we highlight two examples.

UK Myeloma Awareness Week

June was a very active month for the IMF. While IMFers from around the US were in the capitol participating in the Blood Cancer Advocacy Day, IMFers in the UK were taking part in the 3rd Annual UK Myeloma Awareness Week was the focal point for a whole range of activities. The London Times highlighted a celebration of the 150-year anniversary of Europe?s largest Comprehensive Cancer Center, the Royal Marsden Hospital. Ms. Cally Palmer, Chief Executive of the Marsden, introduced the day which focused on 14 myeloma patients treated at the prestigious cancer center who have been in complete remission for over 10 years. IMF Scientific Advisor Prof. Ray Powles and his associate Dr. Bhwana Sirohi presented the details of two of the patients at a ?Grand Rounds? for discussion by Prof. Brian Durie (Los Angeles, California), Dr. Greg Mundy (San Antonio, Texas) and Prof. Jean-Luc Harrouseau (Nantes, France).

What was the secret of these myeloma patients who had beaten the odds and were in excellent health 12 and 14 years after diagnosis? Each participant discussed facets of the disease and treatment pertinent to long survival. Common features emerged. All 14 patients were part of a study of single autologons transplant with high dose melphalan preparation ? a program initiated in the mid-1980s. The two patients presented for discussion were both men who were diagnosed at a young age (36 and 40 years), had early disease, and IgGK myeloma with a low serum b2 microglobulin prior to therapy. They therefore had early stage, good risk features. Testing for chromosome 13 was not available in the mid 1980s, however, the disease features correlated with likely absence of the poor risk 13D chromosome deletion. Interestingly, these patients did not receive Aredia or any other bisphosphonate, although alpha interferon was part of their maintenance protocol.

Such success was truly something to celebrate, but ultimately the discussion turned to the rarity of this wonderful outcome ? unfortunately, only 5% of myeloma patients (10% if one includes early or smoldering patients) can expect to have 10-15 year survival even with high dose therapy and transplantation. Most poor risk patients relapse much sooner. New treatments are required which target myeloma cells resistant to melphalan and other standard therapies. The role of thalidomide was discussed, highlighting the remarkable efficacy in about 30% of patients. Already, patients relapsing or progressing with standard therapies have had their lives extended by thalidomide. Other new drugs such as thalidomide analogs PS 341 and Trisenox® are showing great promise.

A symbol of the UK Awareness Week was that 8 new patients are diagnosed with myeloma every day in the UK. This translates into 38 patients per day in the US and over 1,000 patients per day worldwide. Eric Low, the Executive Director of the IMF(UK) and his dedicated staff worked for months to coordinate the week?s diverse activities which included fundraising events to benefit myeloma research. The week was an enormous success with sponsored London theater performances, meetings of the IMF sponsored UK Forum (a collaborative UK research group) to discuss specific research projects, plus patient and family seminars for both amyloidosis and myeloma patients. The meeting for amyloidosis was the first of its kind, held at the UK National Amyloidosis Center headed by Prof. Phillip Hawkins at the Royal Free Hospital in London. Over 70 patients with amyloidosis, which affects 10%-15% of patients with myeloma, heard presentations from both UK and U.S. experts and were able to have their questions answered. It was a very emotional day that saw the beginnings of many new initiatives to bring patients and researchers together to develop better understanding about the disease as well as better therapies. The U.S. guests toured the UK Amyloidosis Center ? the impressive facilities to evaluate patients included a whole body "amyloid scanner" as well as laboratories devoted to the investigation of amyloidosis at the molecular level. A trans-atlantic collaboration, including an amyloidosis meeting in the U.S., is in the works.

The following day, over 300 patients attended the IMF Patient & Family Seminar at the Royal College of Physicians in London. This fourth annual event, chaired this year by Dr. Atul Mehta from the Royal Free Hospital in London, has become a tradition for the IMF. Speakers from the UK and the U.S. attract patients from the UK and Europe as well as from the U.S. and Asia for a full day of discussions. The IMF plans to continue this successful event. With increasing awareness and many new treatment choices available, access to expert advice and up-to-date information is at a premium. The full range of IMF services are available in the UK, including an active website, a UK edition of the Myeloma Today newsletter, plus regular seminar and support group meetings throughout the year.

The Ayhan Sahenk Foundation Brings IMF Programs to Turkey

Having conducted the first myeloma clinical conference in Russia earlier this year, the IMF continued its international outreach program with the first scientific and patient seminars in Turkey. In collaboration with IMF Scientific Advisor Dr. Meral Beksac, the Turkish Hematology Society, and with the generous support of the Sahenk Foundation, the IMF sponsored a 2-day event in Istanbul.

On the first day, as part of the annual meeting of the Turkish Hematology Society, hematologists participated in a full day of presentations that summarized the latest in myeloma research. International participants included Dr. Brian Durie and Dr. James Berenson (Los Angeles, California), Dr. Philip Greipp (Rochester, Minnesota), Dr. Jean-Luc Harrousseau (Nantes, France), and Dr. Bart Barlogie and Dr. John Shaughnessy (Little Rock, Arkansas). For the Turkish participants, it was an encapsulation of the recent International Myeloma Workshop held in Canada. For the IMF, it was an opportunity to help in the development of new treatment protocols and research projects and, by the end of the afternoon, plans for upcoming myeloma clinical trials had been discussed with Turkish investigators.

The next day, over 130 myeloma patients attended the first Turkish Patient & Family Seminar. The same international speakers presented, but this time with instantaneous translation, detailed panel discussions, and questions from the audience. This was a unique experience for all participants and the involvement of the Sahenk family was greatly appreciated by everyone.

Outside the seminar, the city of Istanbul blended eastern and western cultures, mystery and legend. Inside the walls of the auditorium, the reality of myeloma broke down all barriers. The energized dialogue between the patients and doctors worked the translators to exhaustion as the questions kept coming and the technical details got increasingly complex. It was clear that awareness of the details of a multi-faceted disease and quality of life are equally important to patients the world over. At the end of the day, there were thanks for all involved. The IMF presented Dr. Meral Beksac with an engraved silver bowl to commemorate the event and her great efforts in bringing the meeting together.

Every meeting, domestic and international, increases awareness and brings the myeloma community together as part of a family, to provide support, to educate, and to move forward toward the day when all myeloma patients can look forward to a bright future and an excellent quality of life.

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