For this year we chose again a new place and the ninth annual Educational Seminar for Patients with Multiple Myeloma, their Family and Friends took place in Hotel Galant in Mikulov. We hope that it was a good choice and extra hotel facilities helped to make a pleasant atmosphere of the seminar, which was, as always hospitable and friendly.
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 the Binding Site.
This year has seminar not been accompanied by so pleasant weather, as we used to have, or as we would like, but even this fact did not discourage our regular attendees and many news patients from participating in the seminar. On the contrary weather was on the side of those who wanted to learn and our speakers were the target of many questions, not only in the official discussion, but throughout the seminar.
The seminar was attended by a total of 99 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. Professor Roman Hájek welcomed participants on behalf of the CMG Foundation, Petr Hylena on behalf of KPMM, doc. Ing. Miroslav Hrianka on behalf of Slovak Myeloma Society (SMS), and this year for the first Nadia Elkebir on behalf of the IMF. After a brief welcome the word was passed to representative of Information center in Mikulov, and she presented the history and current image and ambition of charming town Mikulov. Those who stayed until Sunday certainly did not regret.
The next part of the evening enjoyed both the participants and organizers themselves. Also this year, patients or club members who are actively involved in its activities or in own seminar program, received small gifts. Finally some gifts remained as a kind gesture for those who just celebrated a birthday, who came from the greatest distance, who battled which multiple myeloma the longest or who has been diagnosed recently. Then the evening was followed by a traditional buffet and pleasant atmosphere was supported by dulcimer band Mládí z Čejče, with which all sang together. 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 MUDr. Petr Pavlíček and Mgr. Alice Onderková on behalf of KPMM. This year it was publication “Pain and multiple myeloma” written by MUDr. Petr Pavlíček and Mgr. Petra Bučková. This brochure is the first release of the project “Must myeloma hurt?”, and we believe that this project, in which cooperate many experts, will meet with a positive response form patients and will provide a number of useful tips and information.
Then lectures continued according to the program. Prof. R. Hajek focused in his speech on cooperation with European Myeloma Network in the conduct of clinical trials and summarized the most important projects and explained their significance for patients with multiple myeloma. Extensive activities of KPMM summarized Mgr. Alice Onderková, club coordinator, and doc. Ing. Miroslav Hrianka informed about the new project “Return to health” of SMS.
“The patient story” was the theme of last minutes before morning coffee break. Three of present patients agreed to share their life stories with others. During the first two stories we heard how important is to not stop living and have hobbies that still can enrich lives and often require a considerable degree of courage. Third story told patient, who lives and is treated in the USA. All attendees had the opportunity to take a picture of the role of patient in the health care system in our country and in the USA. It is always the main role, but in the USA the patient is more involved in the process of diagnosis and treatment, that means he must himself order diagnostic examinations, find a doctor to treat him, and in many cases, find a company with cheaper drugs, which he should take. Everyone then could tell himself what suits him more.
After the break we continued with panel discussion, which enjoyed not only audience but also all present experts in the treatment of myeloma - prof. R. Hájek, doc. V. Maisnar, MUDr. J. Straub a MUDr. P. Pavlíček. Patients chose questions to the debate, and some of them were answered by all physicians, so patients had opportunity to listen to their own opinion, which may differ from those of others. This brings some choices and assurances that the problem has multiple solutions, especially when chosen method fails or does not work. MUDr. J. Straub had a very educative speech, and he explained how to evaluate the effectiveness of treatment, what necessary examinations are and what type of response exists. Equally interesting was the contribution of Prof. R. Hajek, who outlined the main advantages and disadvantages of new drugs, which are recently used in the treatment of multiple myeloma. He also encouraged all patients that medicine in this area still progresses fast forward.
After this encouraging statement all the participants divided into two parts. Program continued with the KPMM assembly. The assembly had this year important task, and that was to elect the new chairman. The new chairman of Patients club was elected Mr. Petr Hylena. All participants thanked the existing chairman Ing. J. Hajek for all he has done for the Club and wished a lot of strength to the new chairman. Family members who are not members of KPMM had opportunity to talk with Mgr. P. Bučková a MUDr. P. Pavlíček about difficult role for caregivers and agreed that the psychological burden falls on everyone in the family, not only to the patient himself.
For the afternoon program, participants were divided into three groups with different topic. One group talked about the changes in social security with social worker Lea Janků. Other two groups were focused on managing of side effects, but participants had a chance to ask all the experts about anything. All 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 10th Annual Educational Patient seminar in planned for autumn 2014 and will be held somewhere in Bohemia, probably in favorite Spa Bělohrad.
Program
Opening (prof. MUDr. Roman Hájek, CSc.)
Activities of Czech myeloma group, foundation (prof. MUDr. Roman Hájek, CSc.)
Activities of Multiple Myeloma Patient Support group (Mgr. Alice Onderková)
Activities of Slovak Myeloma Society (doc. Ing. Miroslav Hrianka, Ph.D.)
Patient Story
Coffee break
Panel discussion
Evaluation of treatment response (MUDr. Jan Straub)
History of new drugs from the group of IMiDs (prof. MUDr. Roman Hájek, CSc.)
Patient support group assembly
Psychological support (Mgr. Petra Bučková a MUDr. Petr Pavlíček)
Lunch
Division into groups – Q and A
Psychological support (Lea Janků)
Management of side effects (prof. MUDr. Roman Hájek, CSc., doc. MUDr. Vladimír Maisnar, Ph.D., MUDr. Jan Straub a MUDr. Petr Pavlíček)
Coffee break and group exchange
Photo gallery
26. 9. 2013
