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autor: ania w, dodał 2017-07-25 03:49komentuj


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Witam Kochani.Jestem się lat po zz teraz miałam tk.i niestety nad obojczykiem zlewajace sier nowe wezly chłonne o wielkosci 12mm teraz mam miec biobsje powiedzicie przy nawrocie jakie leczenie?

autor: Paulus77, dodał 2017-07-25 08:03komentuj


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> O 03:49, dnia 2017-07-25 ania w napisał(-a):

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> Witam Kochani.Jestem się lat po zz teraz miałam tk.i niestety nad obojczykiem zlewajace sier nowe wezly chłonne o wielkosci 12mm teraz mam miec biobsje powiedzicie przy nawrocie jakie leczenie?

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Druga linia to np. ICE, nie piszesz jakie leczenie mialo miejsce za pierwszym razem. Oczywiscie mega skuteczne jest napromienianie, dzisiaj sa dostepne bardzo precyzyjne i mniej inwazyjne metody. W kolejnych liniach dotepne sa schematy BGD, IGV, terapia celowana Adcetrisem czy immuterapia Opdtivo lub jeszcze nowsza Keytruda. Nie wiem czy mialas przeszczep ale to pewnie jedna z opcji jaka Ci zostanie zaproponowana. Na poczatek Autoprzeszczep a jak nie zadziala to przeszczep od dawcy. Jest jeszcze jedna opcja czyli CAR T-cell ale w Polsce chyba na ta chwile wciaz niedostepna.

+0

autor: ania w, dodał 2017-07-25 13:25komentuj


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Mialam chemie abvd i radioterape.

+0

autor: Paulus77, dodał 2017-07-26 11:20komentuj


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> O 13:25, dnia 2017-07-25 ania w napisał(-a):

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> Mialam chemie abvd i radioterape.

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Czyli zaproponuja autoprzeszcep pod warunkiem wykazania chemiowrazliwosci. Tak wiec byc moze popularny ostatnio BGD, ktory w moim przypadku wchodzil bez skutkow ubocznych i jak doprowadzi do remisji to przeszczep oparty na Bendamustynie. Ja mialem auto 3 miechy temu po kolejnej wznowie i na kort tenisowy wrocilem po miesiacu :)

+0

autor: waluszka, dodał 2017-07-26 17:52komentuj


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> O 11:20, dnia 2017-07-26 Paulus77 napisał(-a):

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> > O 13:25, dnia 2017-07-25 ania w napisał(-a):

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> > Mialam chemie abvd i radioterape.

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>

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> Czyli zaproponuja autoprzeszcep pod warunkiem wykazania chemiowrazliwosci. Tak wiec byc moze popularny ostatnio BGD, ktory w moim przypadku wchodzil bez skutkow ubocznych i jak doprowadzi do remisji to przeszczep oparty na Bendamustynie. Ja mialem auto 3 miechy temu po kolejnej wznowie i na kort tenisowy wrocilem po miesiacu :)

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Paulus77 witam,

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rozumiem, że o przeszczepie już zapomniałeś, po miesiącu na korcie tenisowym, szacunek za postawę :) Jak często masz teraz wizyty kontrolne?

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Szczerze, byłam przekonana, że przeszczep wchodzi w grę przy wczesnych wznowach. Czy wznowa po 7 latach uznawana za wznowę, czy za nowa chorobę?

+0

autor: ania w, dodał 2017-07-26 17:59komentuj


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Suchaj a jeśli wezly sa tylko w jednym mieejsxu nad obojczykiem to nie ma.mozliswosci zeby to jeszcze raz naswietlono.bardzo nie chce tego przeczepu:(:(

+0

autor: Paulus77, dodał 2017-07-26 18:30komentuj


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> O 17:59, dnia 2017-07-26 ania w napisał(-a):

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> Suchaj a jeśli wezly sa tylko w jednym mieejsxu nad obojczykiem to nie ma.mozliswosci zeby to jeszcze raz naswietlono.bardzo nie chce tego przeczepu:(:(

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Wiesz, ze wezly to tylko widoczny efekt dzialania choroby, ktora ma charakter systemowy. Oczywiscie to lekarze beda decydowac o sposobie postepowania, ja tylko przypuszczam, ze zaproponuja auto bo to szansa na kolejna dluga remisje. Ja pierwsza wznowe po przeszczepie leczylem powtornym ABVD plus radio i dalo oddech na 5lat. Kolejna wznowa tylko chemia a pozniej przy 3 wznowie, czyli teraz, BGD plus drugie auto. Ale to moje doswiadczenia i ciezko traktowac to jako wzor. Przeszczep budzi niepokoj ale czesto daje dlugotrwale efekty.

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autor: Paulus77, dodał 2017-07-26 18:41komentuj


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> O 17:52, dnia 2017-07-26 waluszka napisał(-a):

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> Paulus77 witam,

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> rozumiem, że o przeszczepie już zapomniałeś, po miesiącu na korcie tenisowym, szacunek za postawę :) Jak często masz teraz wizyty kontrolne?

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> Szczerze, byłam przekonana, że przeszczep wchodzi w grę przy wczesnych wznowach. Czy wznowa po 7 latach uznawana za wznowę, czy za nowa chorobę?

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Po miesiacu odbijalem tylko pilke od sciany ale teraz juz gram 1,5h z malymi przerwami. Na oddziale reaguja roznie, starsze lekarki pukaja sie w czolo, mlodsza kadra chce moje zdjecie powiesic przy wejsciu na transplantologie :) Jeden gosc w 11dobie po auto wzial w lape walizke i poszedl na pociag do domu, inny po 2 tygodniach polecial do Egiptu. Roznie ludziom odbija :)

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Niestety mimo auto cos tam jeszcze sie swieci, wezly pod lewa pacha niby nie wygladaja groznie ale dzis mialem ich biopsje. Niby najwieksze zmiany jakie mialem zniknely i nie ma zadnych sladow na mostku czy otrzewnej a pobierajac material lekarze byli pewni, ze to nie ma zwiazku z choroba i mam sie nie martwic ale coz oni tam moga po USG wnioskowac?

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Mnie drugi przeszczep robili po 16 latach a wznowy mialem co kilka lat. Jesli cos sie pokaze po 7 latach to sprawa jest pewnie do przemyslenia. Na szczescie sa od tego inni ludzie :)

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autor: ania w, dodał 2017-07-26 18:52komentuj


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Jak ten przeszczep wygląda?

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autor: Paulus77, dodał 2017-07-26 19:41komentuj


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> O 18:52, dnia 2017-07-26 ania w napisał(-a):

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>

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> Jak ten przeszczep wygląda?

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Najpierw leczenie. Trzeba doprowadzic do remisji calkowitej lub czesciowej. Ja dostalem 4x BGD w odstepach 4 tyg. i nie mialem zadnych mdlosci, oslabienia, nie wypadaja nawet wlosy. Zaleznie od osrodka podawane jest to ambulatoryjnie lub z pobytem w szpitalu. Ja lezalem za kazdym razem kilka dni.

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Jesli PET wykaze wrazliwosc choroby ustalany jest termin zbioru komorek do przeszczepu i to jest minimum co musisz zrobic. Zbior to podanie lagodnej chemii i czekanie na spadki w czasie ktorych dostaniesz czynnik wzrostu by w 8 dobie od podania wskoczyc na separator, gdzie posiedzisz 5 godz. podczas ktorych Twoja krew zostanie przefiltrowana (nic nie boli, to jak oddawac krew i pobierac spowrotem w tym samym czasie). Osobiscie lezalem caly proces na polotwartym oddziale ale zjawil sie u nas gosc, ktory chemie dostal w szpitalu a czynnik wzrostu sam sobie podawal w domu a do nas przyjechal na sama separacje.

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Pozniej przerwa i to juz jak sa miejsca na izolatkach. Jedna pani z pokoju obok zaczela przeszczep zaraz po zbiorze w tym samym pobycie, ja czekalem 3 tygodnie. Twoje komorki macierzyste sa juz zamrozone i moga takie pozostac przez dziesiatki lat ale jesli sie zdecydujesz dzialac to lecimy z przeszczepem.

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Przeszczep to kilka dni chemii, ktora niszczy uklad odpornosciowy bez ukladu krwiotworczego z uwzglednieniem ochrony serca czy watroby. Sama chemia przebiegla u mnie i kolegi, z ktorym lezalem bez objawow, jemu tylko przeszedl apetyt, mnie nie :) zaraz po zakonczeniu chemii dostalismy spowrotem nasze komorki macierzyste zbierane wczesniej. Od tego liczymy dni do regeneracji. Od 4 doby do 6 nie ma odpornosci wiec to jest okres szczegolnej uwagi i ciaglych testow krwi i monitorowania temperatury. Od 7-8 doby zaczyna sie regeneracja i odbudowa szpiku i czasem zdaza sie, ze ludzie wychodza w 9 dobie. Ja mialem uciekac w 9 ale wyszedlem chyba w 11... Na poczatku trzeba na siebie uwazac ale ja sie do tego srednio zastosowalem czego oczywiscie nie polecam kazdemu ;)

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autor: ania w, dodał 2017-07-26 21:24komentuj


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Jak dla mnie to straszne co opisujesz boze ja nie wiem czy ja dam rade:(:(Teraz w poniedziałek jade po skierowanie na biobske myślę ze w ciągu 3 tyg.bende wiedziała co ze mna bedzie.Dziękuję za odpowiedź.

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autor: waluszka, dodał 2017-07-27 17:39komentuj


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> Po miesiacu odbijalem tylko pilke od sciany ale teraz juz gram 1,5h z malymi przerwami. Na oddziale reaguja roznie, starsze lekarki pukaja sie w czolo, mlodsza kadra chce moje zdjecie powiesic przy wejsciu na transplantologie :) Jeden gosc w 11dobie po auto wzial w lape walizke i poszedl na pociag do domu, inny po 2 tygodniach polecial do Egiptu. Roznie ludziom odbija :)

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> Niestety mimo auto cos tam jeszcze sie swieci, wezly pod lewa pacha niby nie wygladaja groznie ale dzis mialem ich biopsje. Niby najwieksze zmiany jakie mialem zniknely i nie ma zadnych sladow na mostku czy otrzewnej a pobierajac material lekarze byli pewni, ze to nie ma zwiazku z choroba i mam sie nie martwic ale coz oni tam moga po USG wnioskowac?

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> Mnie drugi przeszczep robili po 16 latach a wznowy mialem co kilka lat. Jesli cos sie pokaze po 7 latach to sprawa jest pewnie do przemyslenia. Na szczescie sa od tego inni ludzie :)

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Trzymaj się.

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Tak poczytam twoje wpisy i jest mi lżej. Dzięki za MEGA pozytyw :) :) :)

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autor: Paulus77, dodał 2017-07-28 08:08komentuj


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> O 21:24, dnia 2017-07-26 ania w napisał(-a):

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> Jak dla mnie to straszne co opisujesz boze ja nie wiem czy ja dam rade:(:(Teraz w poniedziałek jade po skierowanie na biobske myślę ze w ciągu 3 tyg.bende wiedziała co ze mna bedzie.Dziękuję za odpowiedź.

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Czyli masz 3tyg. luzu :) Nie martw sie na zapas, moze sie zdarzyc, ze biopsja da negatywny wynik ale watpie czy odpuszcza i beda dlubac dalej. Tak dluga remisja swiadczy o wolno rozwijajacej sie chorobie, spotkalem sie z okresleniem (slow progression disease) a takie przypadki Hodgkina z reguly nie mutuja co oznacza, ze kolejna chemia powinna dac szybki rezultat. Kwestia przeszczepu to tylko jedna z opcji i wybor nalezy zawsze do Ciebie, ja zebralbym komorki na pewno jako rodzaj polisy. Twoja remisja, ktora uzyskasz moze znow potrwac kilka lat ale masz typ choroby: nawrotowy jak wiekszosc tutaj piszacych/czytajacych. Kolejne leczenia moga oslabic Twoj szpik na tyle, ze nie wyprodukuje pozniej wystarczajacej ilosci komorek macierzystych do przeszczepu wiec warto to zrobic teraz.

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Zagrozenie ciezkich powiklan po autoprzeszczepie to ok 3%, spytaj lekarzy wprost co sadza o fakcie tak dlugiej remisji za pierwszym razem. Mnie, przy pierwszej wznowie proponowanu od razu auto i sie nie zgodzilem, profesor powiedzial pozniej, ze jakby mial calkowita remisje kilka lat po zakonczonym leczeniu, to tez nie decydowalby sie na przeszczep.

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