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News Meeting of The Middle Eastern Childhood Cancer Alliance. Kuwait, April 4th The objective of the meeting was to develop and finalize a MECCA strategy for the most common childhood cancer, acute lymphoblastic leukemia (ALL). In preparation for the meeting, a survey of existing resources for the diagnosis and treatment of ALL was conducted among many countries participating in MECCA. In addition to gathering this important information, the interest in collaborating in a study using a standardized diagnostic work-up and a common treatment approach was assessed among the participants. All of the countries that participated in the survey have the necessary resources for diagnosis and treatment – including capabilities to perform routine laboratory examinations, imaging studies, diagnostic immunophenotyping, and access to the chemotherapeutic agents necessary to treat ALL. All countries expressed an interest in collaborating in a common treatment protocol for ALL. A session in the meeting was devoted to the standardization of the diagnosis of ALL. Dr. Tarek Owaidah, Coordinator of Laboratory Diagnosis of Acute Lymphoblastic Leukemia gave a comprehensive presentation on the different components of the pathway for making an accurate diagnosis of ALL. The group agreed to focus on standardizing sample collection and processing for routine diagnosis and to ensure that immunophenotyping is performed as part of making the diagnosis of ALL. In order to set the stage for developing a common treatment protocol, Dr. Magrath described the 20 year experience of the treatment of ALL in India. The protocol that has been used in India, MCP841, has been conducted among 3 major cancer centers. Many lessons have been learned – most importantly that prognostic factors reported in Western series do not appear to be the same in this Indian series. Over time, as experience was gained with the protocol, particularly with sharing of experiences among the centers, therapy for ALL and supportive care practices were improved and data collection was standardized. Event free survival (EFS) rates have improved over time. In one center EFS is currently 64% at 4 years - comparable to results reported from the UK. Dr. Abdallah Al-Nasser presented two possible treatment regimens that could be used as a basis for the development of the MECCA protocol – BFM International Protocol and the Children’s Cancer Group (CCG) Augmented BFM protocol. He fully explained the objectives, design, and chemotherapy schemas for the two studies. A group discussion took place of the treatment approaches and it was agreed that a specific protocol should be written. The study will include the collection of prognostic factors in a uniform fashion among all participants. If possible, molecular profiling studies will also be carried out. In summary, the group agreed to:
An Educational Workshop For Iraqi Pediatric Oncologists. In June, 2003, some 3 months after the beginning of the most recent war in Iraq, an international conference entitled “Partners Towards Helping Pediatric Cancer Patients in Iraq”, was held to address the exacerbation of the long standing difficulties faced in Iraq in treating children with cancer, and to identify ways of supporting Iraqi medical and nursing staff attempting to provide appropriate care under very difficult circumstances. A follow- up conference was held in December of the same year. These meetings were largely sponsored by the Office of International Affairs of NCI (OIA), and organized by staff of the King Hussain Cancer Center (KHCC) in Amman, Jordan. INCTR representatives were present at both. The major conclusion reached was that the most effective way of ensuring that Iraqi children with cancer receive the best possible care would be through the provision of assistance to pediatric oncology teams currently practicing in Iraq, including educational updates for health care providers. As an interim measure, selected children with cancer – those considered most likely to benefit – would be transferred to centers of excellence in the region, including the KHCC and the King Faisal Specialist Hospital and Research Center (KFSH&RC) in Riyadh. INCTR was asked to take primary responsibility for the development of pediatric oncology workshops designed both to identify problems faced by Iraqi pediatric oncologists, and to provide relevant updates and continuing education in the context of the care of children with cancer. Financial support was made available by the OIA. Accordingly, the First Pediatric Oncology Workshop for Iraqi Oncologists was held at the King Hussain Cancer Center, Amman, Jordan from the 18th – 19th April 2004. Dr Aziza Shad, Chairman of INCTR’s sub-committee on Pediatric Oncology Education, took primary responsibility for the design of the program. Nine pediatric hematologists/oncologists from Baghdad, Basrah and Mosul attended the two-day workshop, which focused primarily on pediatric leukemia, lymphoma, supportive care and palliative care. A distinguished international faculty consisting of experts from INCTR, St Jude’s Children’s Research Hospital, Lombardi Cancer Center, KHCC and KFCH&RC participated in the meeting. The current management of pediatric leukemias and lymphomas was discussed in detail and Iraqi pediatric oncologists provided information about the current state of medical care available in their own hospitals. All highlighted the high mortality rates from infectious complications, particularly during induction therapy, and the lack of availability of chemotherapy agents, antibiotics and blood product support. The second day of the workshop was devoted to discussions and presentations on the management of infections in the immunocompromised host, transfusion therapy and end of life care. It was particularly disquieting to learn that morphine is not available in Iraqi hospitals, and that less effective analgesics can be dispensed in small quantities only with the approval of surgeons. In addition to the presentations at the workshop, the Iraqi physicians were given pediatric textbooks, handouts and relevant articles pertaining to the topics discussed. Several continuing needs were identified – the need for continuing education, which would be greatly simplified by access to internet and televideo linkages, and help with treatment and supportive care protocols. Feedback from the Iraqi oncologists at the end of the workshop was very positive, and a follow-up meeting was planned for early October 2004, as part of INCTR’s Annual Meeting, which is to be held in Cairo, Egypt.
Meeting of The Retinoblastoma Strategy Group. INCTR, Brussels, April 29th - 30th The Retinoblastoma Strategy Group treatment sub-committee met in April in order to finalize the development of a treatment protocol for children with extraocular retinoblastoma and to review and revise the questionnaire used in the on-going group study entitled, “Understanding Problems Faced by Parents of Children with Retinoblastoma Prior to Treatment”. A preliminary report of the results of the questionnaire will be presented in the next edition of the newsletter. During the course of the meeting, group members provided updates on local public and professional awareness programs that have been initiated in their respective countries. Treatment Protocol Clinical data about the children of the parents who were interviewed for the questionnaire was presented. Most children seen by the participating investigators have advanced stage retinoblastoma and many of these children present with extraocular disease, which carries a particularly poor prognosis. Therefore, it was considered an important goal of the protocol to improve the disease-free survival of children with extraocular disease. Children with metastatic retinoblastoma that does not involve the central nervous system (CNS) will also be eligible for the new treatment protocol. It is anticipated that approximately 40 to 50 patients per year can be enrolled on this study. The treatment modalities that will be used in the protocol will include chemotherapy, surgery and radiotherapy. Children will be stratified into two different treatment arms, depending upon the presence or absence of optic nerve involvement at the time of presentation. Children who do not have optic nerve involve.ment (either by histopathology or by a negative CT/MRI scan) at presentation will receive an initial 3 cycles of chemotherapy with vincristine, carboplatin and etoposide, followed by surgery (if needed), and then a further 3 cycles of the same chemotherapy with concurrent radiation therapy. The treatment plan for patients with optic nerve involvement will follow the same sequence, but chemotherapy will consist of alternating cycles of two different combinations of drugs. Chemotherapy will begin with a cycle consisting of vincristine, cisplatin and taxol which will be alternated with a cycle consisting of vincristine, carboplatin and etoposide until a total of 6 cycles are completed. Other components of the protocol document were also finalized during the meeting including the tests that would be required prior to the start of treatment, during treatment and after treatment has been completed. The group anticipates that the protocol document will be finalized later this year. Public and Professional Awareness Programs Dr. Epelman provided an update on the retinoblastoma awareness campaign that has been on-going in Brazil. A public service announcement, shown at INCTR’s Annual Meeting 2003, has been broadcast on television throughout the country. At the conclusion of the announcement, a toll free number is provided to encourage viewers to call for advice and an address is provided so that viewers may also write in for advice. Many telephone calls and letters (including photographs of children) have been received. Dr. Epelman showed the photographs of many children, some of whom had retinoblastoma and some who did not. The public service announcement video may be seen on the INCTR and TUCCA (tucca.org.br) websites. In addition to the television campaign, one million cards with information about retinoblastoma have been printed and distributed to individuals purchasing telephone cards in Brazil in an attempt to further increase public awareness. Data about the number of cases of retinoblastoma that have been diagnosed and/or referred as a result of the two campaigns are being kept. Dr. Leal has formed a Mexican Retinoblastoma Group (MRG) comprised of ophthalmologists and pediatric oncologists interested in retinoblastoma in Mexico. All have agreed to work together in the following areas - studying cases of retinoblastoma, making publications about the pattern of the disease in Mexico, developing uniform treatment approaches, and developing and standardizing methods for improving and enhancing early detection of retinoblastoma. In order to increase public awareness, the MRG has created a poster that will be widely distributed and also obtained television time for a public service announcement about retinoblastoma on one of the more popular TV channels in Mexico. A Retinoblastoma Day that was highly publicized in newspapers was held in Turkey. Dr. Tacylidiz, who is now the secretary of the Pediatric Oncology Society in Turkey, will utilize her role as secretary to address the need to improve early detection of retinoblastoma in Turkey. Dr. Banavali reported that the Tata Memorial Hospital has efforts underway to develop closer ties with ophthalmologists in Mumbai in order to provide more coordinated care for children with retinoblastoma.
Meeting of The Breast Cancer Strategy Group. INCTR, Brussels, May 27th - 28th Survey Study In 2003, the group designed a retrospective survey to collect information about breast cancer cases seen at their institutions during the time period beginning in 1993 through 1997. The survey attempts to collect basic epidemiological data, patient history, information related to the presentation features of breast cancer, and data about treatment and treatment outcomes. The major goal of this study is to create a foundation of information about breast cancer among various developing countries representing patient populations in different world regions. It is anticipated that investigators from Argentina, Peru, Mexico, Tanzania, Egypt, Kuwait, India, Pakistan and Nepal will contribute to the study. Another objective of the study is to demonstrate that high quality data can be collected from developing countries. In this meeting, the survey document was reviewed and finalized. It will initially be conducted by four centers (represented by the project planning sub-committee) in order to evaluate the feasibility of collecting the data as well as the completeness of the information available at the participating institutions. After a preliminary examination of the data obtained from these four institutions, the study will be expanded to centers in other participating countries – Argentina, Mexico, Kuwait, Tanzania and Nepal. Protocol for the Treatment of Locally Advanced Breast Cancer During the meeting, the group discussed possible approaches for the treatment of patients with Stage IIIA, B and C breast cancer. A randomized protocol was designed to compare 3 treatment approaches. One arm will consist of an initial 3 cycles of chemotherapy with 5-fluorouracil (5-FU), adriamycin and cyclophosphamide (FAC) with concurrent radiation therapy followed by surgery, and then followed by 3 additional cycles of FAC. The second arm will be 3 cycles of FAC followed by surgery, then post-surgical radiation with 3 additional cycles of FAC. The third arm will consist of 3 initial cycles of cyclophosphamide, methotrexate and 5-FU (CMF) with radiation therapy followed by surgery, then an additional 3 cycles of CMF. Specific guidelines for surgery and radiation therapy will be built into the protocol. Patient accrual is anticipated to be approximately 500 to 600 per year among the centers presented. It is anticipated that the group will continue its work on the development of the protocol document during the remainder of 2004. Biological Studies Dr. Guy Leclercq and Dr. Marc Lacroix of the Institute Jules Bordet in Brussels met with the group in order to describe their work studying gene expression patterns in breast cancer, as well as estrogen receptors and the variants of co-regulators of these receptors found in breast cancer in different world regions. There was strong interest among the strategy group in conducting similar studies. A separate study incorporating procedures for sample collection, processing and research into molecular characteristics will be written. Other Potential Roles of the Strategy Group Throughout the course of the meeting many discussions took place about the role that the Strategy Group could play in professional educational activities, including the development of guidelines for the management of breast cancer, early detection programs and public awareness campaigns. There was general agreement that the group should prepare a consensus statement about the management of breast cancer in developing countries, incorporating what is known and not known about breast cancer in such countries. The group also agreed to hold educational meetings on breast cancer. Administrative Meetings On May 24th, the Assemblée Générale et Conseil d'Administration of the Alliance Mondiale Contre le Cancer (AMCC) met in Brussels to discuss progress and projects relating to the French branch, as well as administrative matters. On 21st June, the Advisory Board of the UK Branch met in London to discuss new initiatives in the treatment of Burkitt’s lymphoma in Africa. New Staff Member
We welcome Cédric Petit-Musin to the Brussels office as Meetings Coordinator. As time goes by and INCTR undertakes or participates in more and more educational events and project-related meetings, the need has developed for a full time staff member to undertake the task of coordinating the organization of such meetings. Cédric has considerable experience in this area through his prior association with the hotel industry. He assisted in organizing previous INCTR Annual Meetings at the Hilton Hotel in Brussels from, as it were, the other side of the fence, so comes to us with considerable experience in this area, as well as with some knowledge of INCTR.
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