{"id":31430,"date":"2019-03-28T12:30:44","date_gmt":"2019-03-28T11:30:44","guid":{"rendered":"http:\/\/www.invarena.cz\/?p=31430"},"modified":"2019-03-28T17:39:47","modified_gmt":"2019-03-28T16:39:47","slug":"klub-pacientu-s-mnohocetnym-myelomem","status":"publish","type":"post","link":"https:\/\/www.invarena.cz\/?p=31430","title":{"rendered":"Klub pacient\u016f s mnoho\u010detn\u00fdm myelomem"},"content":{"rendered":"

Pro nemocn\u00e9 s t\u00edmto zhoubn\u00fdm onemocn\u011bn\u00edm je d\u016fle\u017eit\u00e9 m\u00edt prostor, kde by se mohli setk\u00e1vat a aktivn\u011b se zapojovat do sv\u00e9 l\u00e9\u010dby. V klubu je kolem 220 \u010dlen\u016f s t\u00edm, \u017ee ka\u017edoro\u010dn\u011b se obm\u011bn\u00ed asi 25 a\u017e 30 z nich. Krom\u011b pacient\u016f se zapojuj\u00ed i jejich rodiny a bl\u00edzc\u00ed, nebo i zdravotn\u00edci. P\u0159\u00ednos klubu je o to v\u011bt\u0161\u00ed, \u017ee mnoho\u010detn\u00fd myelom je onemocn\u011bn\u00ed, jeho\u017e l\u00e9\u010dba se rychle rozv\u00edj\u00ed a na trh p\u0159ich\u00e1zej\u00ed nov\u00e9 l\u00e9ky. Klub m\u016f\u017ee pomoci se v tomto rozvoji orientovat. \u00a0<\/strong><\/p>\n

\u201eMnoho\u010detn\u00fd myelom pat\u0159\u00ed ke vz\u00e1cn\u00fdm onemocn\u011bn\u00edm a mnoho praktick\u00fdch l\u00e9ka\u0159\u016f, neurolog\u016f nefrolog\u016f nebo ortoped\u016f se s\u00a0touto nemoc\u00ed je\u0161t\u011b nesetkalo a je pro n\u011b velmi obt\u00ed\u017en\u00e9 v\u010das stanovit diagn\u00f3zu, proto na\u0161e snahy o informovanost sm\u011b\u0159uj\u00ed i do \u0159ad odborn\u00e9 ve\u0159ejnosti\u201c, podot\u00fdk\u00e1 koordin\u00e1torka Klubu pacient\u016f mnoho\u010detn\u00fd myelom Mgr. Alice Onderkov\u00e1.<\/p>\n

\u201eL\u00e9\u010d\u00edm se a moji zdrav\u00ed vrstevn\u00edci mi ve sportovn\u00edch aktivit\u00e1ch nesta\u010d\u00ed\u201c<\/b><\/span><\/p>\n

Pan\u00ed Jarom\u00edra (75) se l\u00e9\u010d\u00ed s\u00a0mnoho\u010detn\u00fdm myelomem ji\u017e 9 let. V\u017edycky byla velice aktivn\u00ed, sportovala cel\u00fd \u017eivot. Od baletu, p\u0159es sportovn\u00ed gymnastiku, kterou d\u011blala z\u00e1vodn\u011b, a\u017e po cyklistiku, turistiku, horolezectv\u00ed, sjezdov\u00e9 ly\u017eov\u00e1n\u00ed i b\u011b\u017eky. Dost dlouho p\u0159\u00edznak\u016fm sv\u00e9 nemoci nev\u011bnovala pozornost. N\u011bkolik let ji su\u017eovaly bolesti zad, kter\u00e9 ji \u010dasto dovedly a\u017e k\u00a0l\u00e9ka\u0159i, kde po l\u00e9c\u00edch na bolest, mas\u00e1\u017e\u00edch a l\u00e1zn\u00edch v\u017edy do\u0161lo k\u00a0m\u00edrn\u00e9 \u00falev\u011b. Tento stav trval 8 let. V\u00a0roce 2010 skon\u010dila s\u00a0bolestmi zad na pohotovosti, kde pr\u00e1v\u011b slou\u017eila l\u00e9ka\u0159ka z\u00a0hematologie, kter\u00e1 si pan\u00ed Jarom\u00edru pozvala na podrobn\u011bj\u0161\u00ed hematologick\u00e9 vy\u0161et\u0159en\u00ed, aby mohla vylou\u010dit pr\u00e1v\u011b mnoho\u010detn\u00fd myelom. Testy bohu\u017eel tuto nemoc prok\u00e1zaly a pan\u00ed Jarom\u00edra musela ihned za\u010d\u00edt s\u00a0l\u00e9\u010dbou.<\/p>\n

\u201e\u017de to nen\u00ed \u017e\u00e1dn\u00e1 p\u011bkn\u00e1 nemoc, jsem v\u011bd\u011bla. Ale pak jsem si \u0159ekla, \u017ee nem\u00e1m rakovinu, \u201ajenom\u2018 n\u00e1dorov\u00e9 onemocn\u011bn\u00ed krve… a od t\u00e9 doby m\u00e1m \u010distou hlavu.\u201c<\/p>\n

Prvn\u00ed dva roky byla v\u00a0p\u00e9\u010di libereck\u00e9 hematologie, kde absolvovala l\u00e9\u010dbu l\u00e9ky na zpevn\u011bn\u00ed kost\u00ed a chemoterapii. Ne\u017e\u00e1douc\u00ed \u00fa\u010dinky na sebe nenechaly dlouho \u010dekat, m\u011bla pot\u00ed\u017ee se st\u0159evy, byla hospitalizov\u00e1na, musela b\u00fdt na um\u011bl\u00e9 v\u00fd\u017eiv\u011b. Po t\u00e9to prod\u011blan\u00e9 terapii byla posl\u00e1na na hematologickou kliniku 1. LF UK a V\u0161eobecn\u00e9 fakultn\u00ed nemocnice v Praze. Tady se od roku 2013 l\u00e9\u010d\u00ed u doktora Strauba. Transplantace ani autotransplantace, kter\u00e1 se zva\u017euje v\u011bt\u0161inou na za\u010d\u00e1tku l\u00e9\u010dby, nep\u0159ipadala v\u00a0\u00favahu kv\u016fli v\u011bku. Jarom\u00edra byla za\u0159azena do klinick\u00fdch studi\u00ed. Prod\u011blala jich u\u017e n\u011bkolik tak, jak se nemoc vracela. Celkem se zat\u00edm nemoc vr\u00e1tila 5\u00d7.<\/span> Jednotliv\u00e9 terapie zvl\u00e1dala celkem dob\u0159e. N\u011bjak\u00e9 ne\u017e\u00e1douc\u00ed \u00fa\u010dinky samoz\u0159ejm\u011b byly, nap\u0159\u00edklad brn\u011bn\u00ed nohou \u2013 neuropatie, to se ale vy\u0159e\u0161ilo neurologick\u00fdmi l\u00e9ky.<\/p>\n

\u201eV\u017edycky jsem byla otev\u0159en\u00e1 studi\u00edm, testuj\u00ed se l\u00e9ky, kter\u00e9 se pou\u017e\u00edvaj\u00ed ji\u017e v\u00a0zahrani\u010d\u00ed. I kdy\u017e je to v\u017edycky krok do nezn\u00e1ma, m\u016f\u017ee to pomoci do budoucna i jin\u00fdm pacient\u016fm. Pokud se nic nevyzkou\u0161\u00ed, v\u011bda nep\u016fjde dop\u0159edu,\u201c \u0159\u00edk\u00e1 Jarom\u00edra.<\/p>\n

D\u016fle\u017eit\u00e9 je, \u017ee \u017e\u00e1dn\u00e1 z\u00a0terapi\u00ed ji nevy\u0159adila z\u00a0b\u011b\u017en\u00e9ho \u017eivota. L\u00e9\u010dba je poskytov\u00e1na ambulantn\u011b, pacienti nemus\u00ed b\u00fdt hospitalizov\u00e1ni. L\u00e9ky se pod\u00e1vaj\u00ed bu\u010f v\u00a0tablet\u00e1ch nebo infuz\u00edch. P\u0159i v\u0161ech t\u011bchto l\u00e9\u010db\u00e1ch sportovala, t\u0159eba v\u00a0men\u0161\u00ed m\u00ed\u0159e, ale sportovala. Ly\u017eov\u00e1n\u00ed, cyklistika, extr\u00e9mn\u00ed turistika.<\/p>\n

\u201eKrom\u011b t\u00e9 prvn\u00ed l\u00e9\u010dby v\u00a0Liberci, ta byla pro t\u011blo z\u00e1hul, m\u011b \u017e\u00e1dn\u00e1 z\u00a0aktivn\u00edho \u017eivota nevy\u0159adila. V\u017edy, kdy\u017e l\u00e9\u010dba za\u010d\u00edn\u00e1, tak ten prvn\u00ed t\u00fdden, ne\u017e si t\u011blo zvykne, jsem mal\u00e1tn\u011bj\u0161\u00ed, pobol\u00edv\u00e1 hlava, ale aby mn\u011b bylo n\u011bjak extr\u00e9mn\u011b \u0161patn\u011b, nebo mi t\u0159eba padaly vlasy, to ne,\u201c podot\u00fdk\u00e1 Jarom\u00edra.<\/p>\n

<\/a> V\u00ed, \u017ee jej\u00ed nemoc je dlouhodob\u00e1, p\u0159ed n\u011bkolika lety je\u0161t\u011b nevyl\u00e9\u010diteln\u00e1, ale i to u\u017e se m\u011bn\u00ed. Dnes je to hlavn\u011b nemoc \u00fasp\u011b\u0161n\u011b l\u00e9\u010diteln\u00e1. Zhor\u0161en\u00ed se projev\u00ed v\u017edy laboratorn\u011b, ne fyzick\u00fdm zhor\u0161en\u00edm stavu. V\u017edy po tomto relapsu (n\u00e1vratu p\u0159\u00edznak\u016f) je nasazena nov\u00e1 l\u00e9\u010dba. Pan\u00ed Jarom\u00edra je r\u00e1da, \u017ee se dostala pr\u00e1v\u011b na hematologick\u00e9 pracovi\u0161t\u011b V\u0161eobecn\u00e9 fakultn\u00ed nemocnice v\u00a0Praze, pana doktora Strauba obdivuje za skv\u011bl\u00fd p\u0159\u00edstup k\u00a0pacient\u016fm. Douf\u00e1, \u017ee v\u011bda a v\u00fdvoj jdou st\u00e1le kup\u0159edu a \u017ee j\u00ed umo\u017en\u00ed l\u00e9\u010dbu nov\u00fdmi a nov\u00fdmi mo\u017enostmi. Nov\u00fdch terapi\u00ed a jejich p\u0159\u00edpadn\u00fdch vedlej\u0161\u00edch \u00fa\u010dink\u016f se neboj\u00ed. Jak \u0159\u00edk\u00e1, kdy\u017e u\u017e m\u00e1 jednou um\u0159\u00edt, tak pokud mo\u017eno st\u00e1\u0159\u00edm.<\/p>\n

\u00dasp\u011bchy v\u00a0l\u00e9\u010db\u011b mnoho\u010detn\u00e9ho myelomu<\/b><\/span><\/span><\/span><\/p>\n

V\u00a0posledn\u00edch p\u011bti letech do\u0161lo v\u00a0l\u00e9\u010db\u011b k\u00a0v\u00fdznamn\u00e9mu pokroku souvisej\u00edc\u00edmu s\u00a0objevem dal\u0161\u00edch vysoce \u00fa\u010dinn\u00fdch l\u00e9k\u016f, kter\u00e9 z\u00e1sadn\u011b zlep\u0161uj\u00ed progn\u00f3zu nemocn\u00fdch.<\/b><\/i><\/span><\/span><\/p>\n

Mnoho\u010detn\u00fd myelom je z\u00e1ludn\u00e9 onemocn\u011bn\u00ed, kter\u00e9 se nej\u010dast\u011bji se projevuje bolestmi zad. Nemoc je \u010dasto diagnostikov\u00e1na a\u017e po del\u0161\u00ed dob\u011b, kdy dojde k\u00a0rozvoji dal\u0161\u00edch p\u0159\u00edznak\u016f jako je chudokrevnost, zhor\u0161uj\u00edc\u00ed se funkce ledvin, \u010dast\u011bj\u0161\u00ed infekce. Onemocn\u011bn\u00ed postihuje p\u0159ev\u00e1\u017en\u011b star\u0161\u00ed pacienty okolo 63 let v\u011bku. V\u00a0tomto \u017eivotn\u00edm obdob\u00ed dnes bol\u00ed z\u00e1da prakticky ka\u017ed\u00e9ho, proto nemoc b\u00fdv\u00e1 diagnostikov\u00e1na a\u017e v\u00a0pokro\u010dilej\u0161\u00edm stadiu.<\/span><\/span><\/p>\n

Myelom je vyl\u00e9\u010diteln\u00fdm onemocn\u011bn\u00edm asi u 10-15 % nemocn\u00fdch<\/b><\/span><\/span><\/p>\n

Mnoho\u010detn\u00fd myelom je v\u00a0\u010cesku diagnostikov\u00e1n ka\u017ed\u00fd rok u p\u0159ibli\u017en\u011b 450 pacient\u016f. Pat\u0159\u00ed tedy mezi vz\u00e1cn\u011bj\u0161\u00ed onemocn\u011bn\u00ed. <\/span><\/span>\u201eMnoho\u010detn\u00fd myelom je onemocn\u011bn\u00ed, u kter\u00e9ho do\u0161lo za posledn\u00ed dv\u011b dek\u00e1dy k\u00a0nejv\u011bt\u0161\u00edmu posunu v\u00a0terapeutick\u00fdch \u00fasp\u011b\u0161\u00edch v\u00a0r\u00e1mci nejenom hematoonkologie, ale i onkologie obecn\u011b\u201c, podot\u00fdk\u00e1 profesor Ivan \u0160pi\u010dka ze 1. intern\u00ed kliniky L\u00e9ka\u0159sk\u00e9 fakulty Univerzity Karlovy a V\u0161eobecn\u00e9 fakultn\u00ed nemocnice v Praze. B<\/span>yly objeveny nov\u00e9 skupiny l\u00e9\u010div, kter\u00e9 dosud nebyly v\u00a0l\u00e9\u010db\u011b pacient\u016f s\u00a0myelomem vyu\u017e\u00edv\u00e1ny. Jde p\u0159edev\u0161\u00edm o monoklon\u00e1ln\u00ed protil\u00e1tky, u kter\u00fdch nebyly a\u017e na reakce souvisej\u00edc\u00ed s\u00a0infuz\u00ed zaznamen\u00e1ny z\u00e1sadn\u00ed ne\u017e\u00e1douc\u00ed \u00fa\u010dinky. <\/span><\/span><\/p>\n

\u201ePrvn\u00edho zlep\u0161en\u00ed v\u00fdsledk\u016f l\u00e9\u010dby bylo historicky dosa\u017eeno a\u017e po zaveden\u00ed transplantace kmenov\u00fdch bun\u011bk krvetvorby n\u00e1sledn\u011b po pod\u00e1n\u00ed vysok\u00e9 d\u00e1vky chemoterapie. To byl ale l\u00e9\u010debn\u00fd postup vyu\u017eiteln\u00fd jen u nemocn\u00fdch do 65 let v\u011bku,\u201c vzpom\u00edn\u00e1 profesor Vladim\u00edr Maisnar, Ph.D., MBA, z\u00e1stupce p\u0159ednosty pro klinick\u00fd v\u00fdzkum 4. intern\u00ed hematologick\u00e9 kliniky Fakultn\u00ed nemocnice a L\u00e9ka\u0159sk\u00e9 fakulty UK v\u00a0Hradci Kr\u00e1lov\u00e9. V\u00a0dne\u0161n\u00ed dob\u011b maj\u00ed l\u00e9ka\u0159i k\u00a0dispozici n\u011bkolik skupin l\u00e9k\u016f s\u00a0r\u016fzn\u00fdm mechanismem \u00fa\u010dinku. Typick\u00fdm pr\u016fb\u011bhem mnoho\u010detn\u00e9ho myelomu jsou opakuj\u00edc\u00ed se obdob\u00ed zv\u00fd\u0161en\u00e9 aktivity nemoci \u010di progrese onemocn\u011bn\u00ed. \u201eV prvn\u00ed f\u00e1zi l\u00e9\u010dby vyu\u017e\u00edv\u00e1me kombinaci l\u00e9\u010dby proti r\u016fzn\u00fdm klon\u016fm n\u00e1dorov\u00fdch bun\u011bk, \u010d\u00edm\u017ee dojde k\u00a0vyl\u00e9\u010den\u00ed asi t\u0159etiny pacient\u016f. U zbyl\u00fdch dvou t\u0159etin vol\u00edme c\u00edlenou terapii podle typu klonu. Bohu\u017eel neum\u00edme p\u0159edpov\u011bd\u011bt, kter\u00fd l\u00e9k je vhodn\u00fd, pro kter\u00e9ho pacienta, tak\u017ee pou\u017e\u00edv\u00e1me metodu pokus omyl a nen\u00ed v\u00fdjimkou, \u017ee pacient s\u00a0mnoho\u010detn\u00fdm myelomem vyst\u0159\u00edd\u00e1 \u0161est i sedm r\u016fzn\u00fdch l\u00e9k\u016f,\u201c vysv\u011btluje prof. MUDr. Ivan \u0160pi\u010dka, CSc., z\u00a0I. intern\u00ed kliniky 1. LF UK a VFN v\u00a0Praze. V\u00a0sou\u010dasn\u00e9 dob\u011b prob\u00edhaj\u00ed i r\u016fzn\u00e9 klinick\u00e9 studie, kter\u00e9 zp\u0159\u00edstup\u0148uj\u00ed modern\u00ed l\u00e9\u010dbu v\u00edce pacient\u016fm. Probl\u00e9mem je samoz\u0159ejm\u011b finan\u010dn\u00ed n\u00e1ro\u010dnost l\u00e9\u010dby. L\u00e9\u010dba prob\u00edh\u00e1 kombinov\u00e1n\u00edm \u00fa\u010dinn\u00fdch l\u00e9k\u016f. Cena takov\u00e9 kombinace je velk\u00e1. Pro p\u0159edstavu se pohybuje v\u00a0n\u00e1kladech statis\u00edc\u016f na jeden l\u00e9\u010debn\u00fd cyklus, kter\u00fd trv\u00e1 v\u011bt\u0161inou jeden m\u011bs\u00edc. Jedn\u00edm cyklem ale zpravidla l\u00e9\u010dba nekon\u010d\u00ed. Po \u00favodn\u00ed intenzivn\u00ed f\u00e1zi by m\u011bla n\u00e1sledovat f\u00e1ze udr\u017eovac\u00ed.<\/span><\/span><\/p>\n

Zat\u00edmco v\u00a080. letech minul\u00e9ho stolet\u00ed byl mnoho\u010detn\u00fd myelom rychle postupuj\u00edc\u00edm onemocn\u011bn\u00edm s\u00a0n\u00edzkou kvalitou \u017eivota pacient\u016f a s\u00a0d\u00e9lkou p\u0159e\u017eit\u00ed 2,5-3 roky, v\u00a0sou\u010dasn\u00e9 dob\u011b je situace \u00fapln\u011b jin\u00e1. P\u0159i aktu\u00e1ln\u00edm trendu l\u00e9\u010dby s\u00a0v\u00fdznamn\u00fdm zlep\u0161ov\u00e1n\u00edm l\u00e9\u010debn\u00fdch v\u00fdsledk\u016f se d\u00e1 p\u0159edpokl\u00e1dat dosa\u017een\u00ed dlouhodob\u00fdch bezp\u0159\u00edznakov\u00fdch obdob\u00ed a\u017e u 30 % nemocn\u00fdch s\u00a0mnoho\u010detn\u00fdm myelomem a desetilet\u00e9 p\u0159e\u017eit\u00ed u nejm\u00e9n\u011b 50 % nemocn\u00fdch. Nemocn\u00ed <\/span><\/span>podstupuj\u00ed intenzivn\u00ed l\u00e9\u010dbu, po n\u00ed\u017e \u017eij\u00ed bez p\u0159\u00edznak\u016f d\u00e9le ne\u017e deset let a na toto onemocn\u011bn\u00ed v\u011bt\u0161inou nezem\u0159ou. I p\u0159es v\u00fdznamn\u00fd pokrok se u v\u011bt\u0161iny nemocn\u00fdch po obdob\u00ed bez p\u0159\u00edznak\u016f objev\u00ed nov\u00e1 aktivita onemocn\u011bn\u00ed a mus\u00ed podstoupit dal\u0161\u00ed l\u00e9\u010dbu. Mnoho\u010detn\u00fd myelom dnes pova\u017eujeme za vyl\u00e9\u010diteln\u00fd u p\u0159ibli\u017en\u011b 10\u201315 % nemocn\u00fdch.<\/span><\/span><\/p>\n

tiskov\u00e1 zpr\u00e1va<\/p>\n

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Pro nemocn\u00e9 s t\u00edmto zhoubn\u00fdm onemocn\u011bn\u00edm je d\u016fle\u017eit\u00e9 m\u00edt prostor, kde by se mohli setk\u00e1vat a aktivn\u011b se zapojovat do sv\u00e9 l\u00e9\u010dby. V klubu je […]<\/a><\/p>\n<\/div>","protected":false},"author":1,"featured_media":19818,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[9],"tags":[],"class_list":["post-31430","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-zpravy"],"_links":{"self":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/31430","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=31430"}],"version-history":[{"count":0,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/posts\/31430\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=\/wp\/v2\/media\/19818"}],"wp:attachment":[{"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=31430"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=31430"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.invarena.cz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=31430"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}