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.
The seminar is still very popular and the planned capacity was quickly filled. We are pleased that we could see new faces and also is still many of those who participate in the seminar repeatedly.
The seminar was attended by a total of 101 patients and their loved ones. As usual, most of the participants arrived on Friday and only those from the surrounding area have registered on Saturday morning. Friday night was traditionally opened with a festive welcome from representatives of the organizing and hosting organizations, and also director of the complex, Mgr. Štěpán Vele. Professor Roman Hájek welcomed participants on behalf of the CMG Foundation, Ing. Josef Hájek on behalf of KPMM, doc. Ing. Miroslav Hrianka on behalf of Slovak Myeloma Society (SMS), and finally Greg Brozeit on behalf of IMF. After a brief welcome the word was passed to Dr. Dana Jirasková, and she introduced facilities and service in Lázně Bělohrad. She also stressed that this complex is prepared and staff trained to care of the patients with multiple myeloma.
A very popular part of the seminar is giving and receiving small gifts. This year we took the opportunity 5-year anniversary of KPMM and we awarded especially those who are actively involved in the organization of club life in the regionals groups. Several gifts also remained as a lovely present for those who just celebrated a birthday or struggling with myeloma longest or has been just diagnosed, and so on. Just as we did last year. Then the evening was followed by a traditional buffet and pleasant atmosphere was supported by local musicians called Galileo Band. Shortly before midnight, the last went to their rooms.
On Saturday, the program was initiated in 8:30 am and its content has been devoted to the treatment, research and care of patients with multiple myeloma. Foreword as always belonged to Prof. R. Hájek, who welcomed all participants, especially those who arrived on Saturday morning. In brief introductory speech Prof. Hájek thanked everyone for the preparation of seminars and the new brochure was introduced by Ing. J. Hájek and Mgr. A. Onderková on behalf of KPMM. This year it was publication about yoga – “Yoga and its importance in chronic disease” written by Ing. Ivana Reifenauer. This brochure is a natural continuation of the program “Yoga and multiple myeloma”, and we believe that this physical and mental exercise will find more and more supporters among the patients.
Then lectures continued according to the program. Prof. R. Hájek summarized news in research and treatment of multiple myeloma during this year. He also mentioned the fact that he leaves University Hospital Brno and starts new career in University Hospital Ostrava, and he hopes that “he will contribute to further improving the care of patients with multiple myeloma in Moravskoslezky region and patients will not have to travel to other regions too often”. We wish him professional success in new workplace.
Extensive activities of KPMM summarized Ing. J. Hájek and doc. Ing. M. Hrianka informed about the new activities of SMS. Last speech before morning coffee bread was traditionally devoted to Greg Brozeit, and he prepared for this time an interesting thought about the fact that living with myeloma may be similar to life with a bad neighbor. He emphasized, that many of us have own experience with adaptation in living with bad neighbor, and with some level of tolerance cannot be that life so bad. Mr. Brozeit spoke in English and his comments were kindly translated by Dr. Alžběta Kotková.
After the break all the presentations were focused on managing myeloma. First of all Dr. Ondřej Sláma clarified the role of painkillers. He stopped at some slides and explained how to use them effectively. Most of the participants agreed that the proper use of analgesics underestimate and probably reduce their maximum utilization. Another very instructive presentation prepared doc. Dr. Martin Repko, who presented specific examples of a wide range of orthopedic procedures, by which doctors are able to relieve back pain and correct spinal and bone defects caused by myeloma. The most anticipated contribution had Dr. Petr Pavlíček, who gave himself the difficult task of trying to answer the question “Is myeloma curable?” Who was waiting clear answer was probably disappointed, but the message was more than positive. Dr. Pavlíček explained that multiple myeloma is not only one, but there are groups of myeloma, which is difficult to distinguish and predict their progress. He also reflected on the term “curable” and he opened a new way of thinking about the disease itself. And for those who still wanted to hear a particular number, he stopped at number twelve. Twelve years of complete remission might bring a magic word “ you are cured”. But only time will show how far or close to the truth are now our experts.
After this encouraging statement all the participants divided into two parts. Program continued with the KPMM assembly. Family members who are not members of KPMM had opportunity to talk with Dr. Sláma and Dr. Pavlíček about a very difficult and often neglected topic – palliative care. Everyone had a chance to express their feelings and much discussion was devoted to “compassionate lies”.
For the afternoon program, participants were divided again into two groups with different topic. One group talked about the changes in social security with social worker Lea Janků. The second group was focused on managing of side effects, but participants had a chance to ask doc. Dr. Maisnar and Dr. Pavlíček about anything. Both groups were changed after the break, that everyone the opportunity to discuss all the topics with each expert.
Shortly before 4:30 pm was seminar officially closed. The Czech Myeloma Group Foundation thanks all the patients, their relatives and friend and all the guests.
The 9th Annual Educational Patient seminar in planned for autumn 2013 and will be held somewhere in Moravia.
- Introduction (prof. MUDr. Roman Hájek, CSc.)
- News in treatment and research of MM in 2012 (prof. MUDr. Roman Hájek, CSc.)
- Activities of Multiple Myeloma Patient Support group in 2012 (ing. Josef Hájek)
- Activities of Slovak Myeloma Society in 2011-2012 (doc. Ing. Miroslav Hrianka, Ph.D.)
- Life with myeloma – life with bad neighbor (Greg Brozeit)
- Pain management (MUDr. Ondřej Sláma, Ph.D.)
- Myeloma from the perspective of orthopedist (doc. MUDr. Martin Repko, Ph.D.)
- Is myeloma curable? (MUDr. Petr Pavlíček)
- Patient support group assembly
- Palliative care (MUDr. Ondřej Sláma, Ph.D. a MUDr. Petr Pavlíček)
Division into 2 groups – Q and A
1. Changes in social security (Lea Janků)
2. Side effects management (doc. MUDr. Vladimír Maisnar, Ph.D. a MUDr. Petr Pavlíček)
Coffee break and group exchange
10. 11. 2012