The seminar was organized traditionally by the Czech Myelom Group (CMG) Foundation in cooperation with the International Myeloma Foundation (IMF) and the Multiple Myeloma Patient Support Group (KPMM), and with financial support kindly provided by the Czech Myeloma Group Association and Lipomed AG.
Even after more than ten years, we can say that the seminar is still very popular. Actually this year was the highest attendance so far. We welcomed many of those who come repeatedly, but there were also a lot of “new faces”. The seminar was attended by 114 patients and their families, and some of them renounced participation shortly before the seminar because of worsened health condition. As usual, most of the participants arrived on Friday and only those from the surrounding area have registered on Saturday morning.
Friday evening was opened with a welcoming speech of the representatives of the organizers and guests. Professor Roman Hajek welcomed participants on behalf of the CMG Foundation, Professor Vladimir Maisnar on behalf CMG Society, Petr Hylena on behalf of KPMM, Ing. Miroslav Hrianka on behalf of Slovak Myeloma Society (SMS), and Nadia Elkebir on behalf of the IMF. Her words translated into Czech language throughout the seminar Associate Professor Jiri Minarik. In her speech, she expressed the pleasure of reunion and visiting of the Czech Republic, and thanked for everything that CMG and KPMM are doing for myeloma patients. On that occasion she awarded Prof. Hajek and Mr. Hylena with GMAN plaque with the date of the establishment of both organizations.
It is an unwritten tradition that Friday evening continues in a relaxed atmosphere and two patient stories definitely contributed to the good mood of everyone. Both stories symbolized life perspective, strength, determination, and the sense of humor, which helps to overcome difficult moments. Small delight were also small gifts, which organizers prepared as a thanks for those who are actively involved in club activities, share own life story in the Bulletin or talk about it in seminars, assist in the preparation of the program of club meetings, actively participate in events organization or otherwise help.
In a good mood all went into the restaurant, where delicious refreshment was prepared, and pleasant atmosphere was supported again by favorite local musicians called Galileo Band. It did not take long and the floor was soon filled with dancers. Shortly before midnight, the last went to their rooms.
On Saturday, the program was initiated after breakfast, in 8:30 am. As was already proved in previous years, also this year the seminar was prepared more interactive, less specialized presentations and more space for questions and discussion. Foreword as always belonged to Prof. R. Hájek, who welcomed all participants, especially those who arrived on Saturday morning. In brief introductory speech Prof. Hajek thanked everyone for the preparation of seminars and three brochures about new drugs were introduced: Imnovid (pomalidomid), Ninlaro (ixazomib) and Empliciti (elotuzumab). We hope that these drugs will be used by as many patients as possible. The rest of the morning program belonged to presentation of the activities of the organizers and their partners.
Professor Maisnar spoke about the role of the Czech Myeloma Group in the field of multiple myeloma in the Czech Republic. In his speech summarized information about myeloma and advances in treatment, he mapped the history of the organization, stopping at the most important projects, such as the Registry of monoclonal gammopathy (RMG), probably the largest registry in the world, and the project CRAB which successfully introduces myeloma symptoms to the general practitioners and other experts, to be this disease detected early and effective treatment started. Extensive activities of KPMM summarized Mr. Hylena and Alice Onderkova and Mr. Hrianka informed about the new activities of SMS. He enriched his speech with the video from the mini-marathon, which was attended by many “runners for myeloma”. The last contribution before the morning break was Nadia´s Elkebir presentation, summarizing the IMF mission on a global scale.
After the break, program followed by a popular panel discussion. The questions, which were collected from patients, were answered by all present experts - Prof. R. Hajek, Prof. V. Maisnar, Dr. J. Straub, Assoc. Prof. J. Minarik and the newcomers Assoc. Prof. Ludek Pour. Some questions were answered individually, some by all of them. All the questions and answers will be published in one of the next issues of the Bulletin. Last scientific lecture was presented by Prof. Hajek. In his speech he tried to explain whether it is good for patients to participate in clinical trials, and how, and why patients is chosen. The unanimous recommendation was to participate in the study, but he emphasized that not all patients can be recruited into the study because of various objective reasons.
Just before lunch program continued with the KPMM assembly. Family members who are not members of KPMM had opportunity to do a light exercises and learn about the different types of relaxation techniques from Mgr. Pavla Straubova.
For the afternoon program participants were divided into three groups with different topic. Again, we took advantage of nice weather, so also this year could two groups sit outside. Prof. R. Hajek took place under a crown of oak and with his group discussed the limitations of new drugs. Prof. V. Maisnar and Dr. J. Straub settled with their group in the shade in a warm corner of the hotel and discussed about side effects of treatment. Assoc. Prof. L. Pour and Assoc. Prof. J. Minarik stayed with their group in the main hall and faced with difficult and never-ending questions how and how much is possible to affect neuropathy.
Discussions were very exciting and it was so difficult to quit talks and invite everyone for a afternoon snack. All participants exchanged group after the coffee break.
Seminar was officially closed shortly before 4:30 pm. Representatives CMG Foundation and KPMM thanked all the patients, their relatives and friend and all the guests. The 13th Annual Educational Patient seminar in planned for autumn 2017 and will be held again in Hotel Galant Mikulov in Moravia.
What I lost and get because of myeloma. Patient stories.
Opening (Prof. MUDr. Roman Hájek, CSc.)
Role of the Czech Myeloma Group in the field of MM (Prof. MUDr. Vladimír Maisnar, Ph.D., MBA)
Activities of MM Patient Support Group in 2016 (Petr Hylena, Mgr. Alice Onderková)
Activities of Slovak Myeloma Society in 2016 (Doc. Ing. Miroslav Hrianka, Ph.D.)
Cooperation with the IMF (Nadia Elkebir)
Morning coffee break
Who is a suitable candidate for a clinical trial and why (prof. MUDr. Roman Hájek, CSc.)
Patient support group assembly – all the members
Rehabilitation techniques (Mgr. Pavla Straubová)
Division into 3 groups – Q and A
Management of neuropathy (Doc. MUDr. Luděk Pour, Ph.D., Doc. MUDr. Jiří Minařík, Ph.D.)
Management of side effects (Prof. MUDr. Vladimír Maisnar, Ph.D., MBA, MUDr. Jan Straub)
Usage limitations of new drugs (Prof. MUDr. Roman Hájek, CSc.)
Afternoon coffee break and group exchange
11. 9. 2016