The 5th Annual Educational Seminar for Myeloma Patients, their Family and Friends (2009)

The 5th educational seminar for patients with multiple myeloma, their family and friends 2009

The fifth volume of ‘The educational seminar for patients with multiple myeloma, their family and friends’ took place in a new spa hotel in Karlova Studánka on 20th-21nd November 2009. Even though the season and the fog made the journey to Karlova Studánka slightly difficult, everyone managed to get there safely and they could enjoy beautiful sunny weather. The seminar was organised by the Czech myeloma group (CMG), the endowment fund in co-operation with traditional partners: The International Myeloma Foundation (IMF) and the Multiple myeloma support group (KPMM) and with generous sponsorship of IMF and the Celgene company.

58 patients and 45 relatives or friends attended this event. Thanks to the date and placement almost everyone arrived on Friday and enjoyed an informal evening with friendly atmosphere before the seminar. Someone attended this event before ad someone was new and therefore highly appreciated the opportunity to share knowledge with people who fight with the same disease. The participants also enjoyed meeting their doctors and nurses outside the surgery. The evening took place in the main bathhouse Libuše. After a gala opening of the seminar with dinner party Jan Vrabec MD started with brief history of the spa and introduced plans for the future. The atmosphere was formed by a local band called Řebřiňák which succeeded in forcing everyone to dance. The most resistant stayed till 23 p.m. and then moved to the hotel to prepare for Saturday’s programme. Apart from the main house Libuše the participants where also housed in other parts of the spa – the houses Bezruč and Slezký dům.

The scientific part of the seminar started on Saturday at 8:30 a.m. and Professor Roman Hájek, MD, PhD, the president of the board of directors of CMG NF summed up the activities of the organisation in the last year. As every year the new brochure for the patients was launched in cooperation with IMF. For this year it was “Understanding bisphosponates”. The Myeloma Patient Support Group represented by Zuzana Toufarová also presented their activities, and this year also launched new brochure “Psychological support for the myeloma patients and their relatives”. The Patient Support Group of the Slovak Myeloma Society traditionally represented by Ing. Miroslav Hrianka, PhD. informed about their activity. The topic of psychological aid in the fight with the illness was excellently introduced by PhDr. Ing. Ludmila Malinová, MBA and by this she prepared the atmosphere for one of the afternoon discussion clubs. Some participants had the opportunity to meet PhDr. Malinová before as a part of regional meetings of KPMM. In the end of the first block the president for Europe of IMF Greg Brozeit, who was well-know because this was his forth time on the seminar, gave an interesting speech about a difficult topic ‘How to be a better patient’. For easier understanding the original English presentation was translated to Czech and Mgr. Veronika Pešinová helped with translating the comments.

After a break the attention was focused on specific topics. As. Professor Jaroslav Bačovský, MD, PhD talked about new approaches in the treatment, Miroslava Schützová, MD spoke about the relapse treatment and Evžen Gregora, MD informed about new drugs and clinical trials. Jan Straub, MD discussed the usual unwanted side effects – neuropathies.

Just before lunch the questions were asked by the members of KPMM and answered by experts who were reinforced by Professor Vlastimil Ščudla, MD, PhD as a part of a panel discussion. A huge variety of topics of these questions also included the swine flu and vaccination.

In the afternoon part the participants could join smaller discussion groups. Three were designed for patients and one for relatives and friends. After the first break only the three groups for patients continued but their beloved could join them as well. Each group discussed a specific topic and an expert from that field controlled the discussion. The first group talked about the care for family members and this club was only for the relatives or friends. Other clubs discussed topics such as side effects of certain treatment, how to prepare for an ambulatory check-up, how to understand laboratory outcomes etc. As the seminar took place in spa, which are recommended to our patients, the last club was about physical activity and recommended rehabilitation technique in this illness. The patients were given all the information about the spa procedures and adequate physical activity by Mr. Vrabec and Mgr. Pavla Straubová in this club. Mrs. Straubová is an expert in the field of care for patients with myeloma even on the level of regional meetings of KPMM. The participants of this seminar were divided into these groups according to their interests but as the groups were changed three times everyone had the opportunity to discuss all the topics with each expert. The afternoon discussion clubs were considered to be the biggest contribution to this event.

The seminar was ended at 17:00 p.m. by a traditional quiz and a small reward for the winners.

The Czech myeloma group, endowment fund would like to thank both the patients and their company for the participation and also the experts, discussion leaders, guests and the organisation IMF and the Celgene company for their support. We thank you for every remark, which will be a reason to improve these types of events.

The next 6th educational seminar is planned to be held in September 2010. The exact place is not chosen yet. We hope that the organising team will succeed in finding an even more attractive place so we fulfil the many possibilities we have in our beautiful country.

We are looking forward for future co-operation.