The 7th Educational Seminar for Patients with Multiple Myeloma, their Family and Friends was held for the third time in known area of MY Hotel in Lednice. Even though the date of the event was chosen at very end of September, the weather certainly did not disappoint anyone, and those who decided to stay in Lednice until Sunday, spent nearly summer weekend.
The seminar was organized traditionally by the Czech Myeloma Group (CMG) Foundation in cooperation with the International Myeloma Foundation (IMF) and the Multiple Myeloma Patient Support Group (KPMM), and with the financial support kindly provided by the Czech Myeloma Group, Celgene and Janssen companies.
Seminar is still very popular and the planned capacity was filled within three weeks after sending applications. We could see those who participate in the seminar with rock-solid regularity, but also many new faces. Two day seminar took place in MY Hotel but, hotel capacity was insufficient, and some guests were housed in a nearby hotel Mário.
The seminar was attended by a total of 98 patients and their family members. As usual, most participants arrived on Friday and only those from surrounding area registered on Saturday morning. Friday night was traditionally with a festive welcome from representatives of the organizing and hosting organizations. Professor Roman Hajek, M.D. welcomed participants on behalf of the CMG Foundation, Ing. Josef Hajek on behalf of KPMM, Greg Brozeit on behalf of IMF, and finally doc Ing. Miroslav Hrianka, Ph.D. on behalf of Slovak Myloma Society. After a short introduction the word belonged to foreign guests – Polish Myeloma Patient Help Association. Our invitation accepted its president Roman Sadzuga and his assistant Rafal Zebrowski. Mr. Sadzuga is the patient with multiple myeloma and he gave interesting speech about difficult start of their organization and also about not very favorable situation in Poland. His words were continuously translated into Czech by Mgr. Anna Pomykazcova, Ph.D. Mr. Sadzuga´s contribution was highly valuated by our patients. It gave them some ideas of patient care in different country. After a short discussion it was prepared a little surprise. During the past seminars patients were awarded for correctly completing a quiz. But this year we decided to reward different “life situation”. So small gifts were given to the patient, who has multiple myeloma the longest or shortest, who came from the largest or smallest distance, who has the closest birthday, who has the most grandchildren, etc. An encouraging fact of this “informal survey” was that many patients are living with dg. multiple myeloma more than 10 years and a few more than 15 years. Social evening continued with small banquet and atmosphere was formed by Cimbalova muzika Kapric (dulcimer music). Shortly before midnights last stayers also went to their rooms.
On Saturday the program was launched at 8:30 am and its content was significantly scientific. Introductory remarks said again Professor R. Hajek and he introduced “new” brochures for this year. For this year physicians updated three previously issued brochures, about thalidomide, Velcade and Revlimide. The main speech of Professor Hajek was completely changed this year. He did not talk about CMG Foundation activities but he focused on what interested him most in the treatment and research of multiple myeloma in recent years. Activities of Multiple Myeloma Patients Support Group summarized Ing. J. Hajek and about activities of Slovak Myeloma Society informed Ing. M. Hrianka. The last talk before morning break was given by Greg Brozeit from IMF and he also left his popular theme “How to be a better patient” and he equally impressive talked about “How much has changed in the world of multiple myeloma since 1998”. The conclusions of his contribution has been very encouraging and summarized the basic fact that multiple myeloma is possible to classify as the chronic disease. Mr. Brozeit spoke in his native language and all his comments were kindly translated by Klara Hajkova.
After the break all the presentations were focused on some specific topics. Miroslava Schutzova, M.D. talked about novel drugs and treatment options. Petr Pavlicek focused his speech on bisphosphonates in bone disease and Vojtech Perina, M.D. this theme continued with lecture about oral care and osteonecrosis of the jaw.
After these three educational lectures all the participant rose from the chair and stretched their body with physiotherapist. Seminar program after this short warm-up was devoted to the KPMM assembly. Family members who are not members of KPMM had opportunity to talk with clinical psychologist Mgr. Petra Buckova and Professor R. Hajek about difficulties in caring for their loved ones.
For the afternoon program, participants were divided into two groups with different topic. One group talked about the importance of nutrition for patient with cancer and how to manage associated side effects. Discussion was led by dietary experienced therapist Dana Hrbkova. Second group was focused on way how to prepare for check-up at the doctor. During the discussion with two physicians Jan Straub, MD and as. Professor Vladimir Maisnar, MD were emphasized some important advices and guidance for more effective out-patient visits. Both groups exchanged after the short break, that everyone had the opportunity to discuss all the questions with each expert.
The seminar was officially closed at 4:30pm. The Czech Myeloma Group Foundation thanks all the patients, their relatives and friend, all the guests and the IMF, CMG, Celgene and Janssen for their support.
The 8th Annual Educational Patient Seminar is scheduled for September 2012 in Podebrady.
Program
Coffee break
Lunch
Division into 2 groups – questions and answers
1. How to prepare for check-up at the doctor (Jan Straub and Vladimir Maisnar)
2. Nutrition for cancer patients (Dana Hrbkova)
Coffee break and group exchange
Photogallery
1. 10. 2011
