Sidinga izindlela ezengeziwe zokwelapha i-myelodysplastic neoplasms/syndromes (MDS)
Ucwaningo lwezokwelapha lwabantu abane-MDS ne-anemia manje luyabhalisa.
Mayelana Nocwaningo Lwe-RENEW
Ucwaningo Lwe-RENEW luhlola umuthi wocwaningo ukuze lubone ukuthi ungasinciphisa ngokuphephile nangokuphumelelayo yini isidingo sokumpontshelwa igazi ngenxa ye-anemia ehlobene ne-myelodysplastic neoplasms/syndromes (MDS).
Lolu cwaningo lunokuvakasha okungenani okungu-20, okunye kwako okungenziwa ekhaya.
Phakathi nocwaningo, uzoba namathuba angu-2 kwangu-3 (67%) okuba uthole umuthi wocwaningo nethuba eli-1 kwangu-3 (33%) lokuba uthole umuthi-mbumbulu. Umuthi-mbumbulu yinto engasebenzi efana nomuthi wocwaningo kodwa ayinawo umuthi osebenzayo.
Kulindeleke ukuba umuthi wocwaningo uvimbe iphrotheni esegazini ephazamisa ikhono lomzimba wakho lokwakha amaseli egazi abomvu. Uzojovwa ngaphansi kwesikhumba njalo emavikini angaba ngu-4 esikhungweni socwaningo.
Ungase ufaneleke ukubamba iqhaza kulolu cwaningo lwezokwelapha uma:*
- Uneminyaka engaphezu kuka-18
- Uhlonzwe ngokuthi une-MDS enobungozi obuphansi kakhulu, obuphansi, noma obuphakathi nendawo
- Une-anemia okumele yelashwe ngokumpontshelwa igazi
- Kungasakuzuzisi ukwelashwa kokuqala owakuthola kwe-MDS, noma kungalindelekile ukuba uzuze ekwelashweni okuvamile
*Ungase ungafaneleki ukubamba iqhaza uma uye wathola ukwelashwa okuthile kwe-MDS yakho. Ithimba locwaningo lizoxoxa nawe ngezimfuneko ezengeziwe.
Kungani Kumele Ubambe Iqhaza?
Uma ufaneleka ukubamba iqhaza futhi ufuna ukulibamba, uzothola:
- Umuthi wocwaningo nakho konke ukunakekelwa okuhlobene nocwaningo mahhala
- Ukuqashwa eduze udokotela nethimba locwaningo abanolwazi oluhle nge-MDS
- Ukubuyiselwa ngezindleko zokuya ekuvakasheni kocwaningo, lapho kudingeka
- Ithuba lokusiza sithuthukise ulwazi lwezokwelapha mayelana ne-MDS
Ukuphepha kwakho ngesikhathi ubamba iqhaza Ocwaningweni Lwe-RENEW kuphezulu kakhulu kithina. Uma unemibuzo noma ukukhathazeka noma nini phakathi nocwaningo, ilungu lethimba locwaningo likulungele ukukhuluma nawe.
Ukubamba kwakho iqhaza kunoma yiluphi ucwaningo lwezokwelapha ukwenza ngokuzithandela, futhi ukhululekile ukuhoxa noma nini nganoma yisiphi isizathu. Ubumfihlo bakho buzolondolozwa phakathi nocwaningo.
Mayelana Ne-MDS Ne-anemia
I-Myelodysplastic neoplasms/syndromes (MDS) yizinhlobo zomdlavuza wegazi. I-anemia ehlobene ne-MDS yenzeka lapho umnkantsha wethambo we-MDS ungakwazi ukwakha amaseli egazi abomvu anempilo anele. Ngokuvamile abantu abane-MDS bane-anemia, noma inani eliphansi lamaseli egazi abomvu, futhi badinga ukumpontshelwa igazi ukuze badambise izimpawu zabo. Lezi zimpawu zingase zihlanganise:
- Ukuvondleka/ukukhathala ngokweqile
- Iphika
- Isikhumba esiphaphathekile
- ukungakuthandi ukudla
- Ukushaya kwenhliziyo okushiyanayo/okusheshayo
- Ubuhlungu besifuba
Abantu abaningi abane-MDS bane-anemia ngezinga elithile, futhi abalinganiselwa engxenyeni yeziguli ezine-MDS badinga ukumpontshelwa igazi.1 Nakuba kukhona ukwelashwa okutholakalayo kwe-MDS, akusebenzi kubo bonke abantu, futhi akubona bonke abantu abakufanelekayo ukukuthola.
Isikhombo:
1 Platzbecker U, Fenaux P, Adès L, et al. Izihlongozo zezimfuneko ze-IWG 2018 ezibuyekeziwe zokusabela ezifweni ezisegazini ezigulini ezine-MDS zifakiwe ezingcwaningweni zokwelapha. Igazi. 2019;133(10):1020-1030. doi:10.1182/blood-2018-06-857102
Thinta Isikhungo Socwaningo Esiseduze Nawe.
Sicela ufonele inombolo ebhalwe emiphumeleni yendawo ukuze uqinisekise isikhungo socwaningo esiseduze kakhulu nawe. Khuluma nelungu lesikhungo socwaningo ukuze uthole ulwazi olwengeziwe. Ulwazi olunikezayo luzogcinwa luyimfihlo.
Uzosekelwa ngezindleko zohambo nangembuyiselo.
Imibuzo Evame Ukubuzwa
Le ngxenye izosiza ukuphendula eminye yemibuzo ebalulekile ongase ube nayo ngokubamba iqhaza kulolu cwaningo.
Mayelana Nocwaningo Lwe-RENEW
Kungani kuqhutshwa Ucwaningo Lwe-RENEW?
Ucwaningo Lwe-RENEW luhlola umuthi wocwaningo ukuze lubone ukuthi ungasinciphisa ngokuphephile nangokuphumelelayo yini isidingo sokumpontshelwa igazi ngenxa ye-anemia ehlobene ne-myelodysplastic neoplasms/syndromes (MDS).
Umuthi wocwaningo usebenza kanjani?
Kulindeleke ukuba umuthi wocwaningo uvimbe iphrotheni esegazini ephazamisa ikhono lomzimba wakho lokwakha amaseli egazi abomvu.
Nqinquma kanjani ukuthi lolu cwaningo lwezokwelapha lungilungele yini?
Ngaphambi kokuba uvume ukubamba iqhaza, ithimba locwaningo lizohlola nawe zonke izici zocwaningo, kuhlanganise nokuhlolwa nezinqubo ezidingekayo. Uma unquma ukubamba iqhaza, uzonikezwa idokhumenti ebizwa ngokuthi Imvume Esekelwe Olwazini ekunikeza, ngokubhalwe phansi, injongo yocwaningo, ukuhlolwa, izinqubo, izinzuzo, izingozi, nezinyathelo zokuqapha. Uzoba nethuba lokubuza imibuzo futhi unqume ukuthi ukubamba iqhaza kukulungele yini.
Ubani engingamthinta uma nginemibuzo eyengeziwe?
Sicela uthinte isikhungo socwaningo esiseduze nawe uma unemibuzo. Umhlengikazi noma umxhumanisi wocwaningo angakunikeza ulwazi olwengeziwe futhi aphendule imibuzo yakho.
Yini umuthi-mbumbulu?
Umuthi-mbumbulu yinto engasebenzi efana nomuthi wocwaningo kodwa engenawo umuthi wocwaningo osebenzayo. Ukusetshenziswa komuthi-mbumbulu ocwaningweni olunjengalolu kuyadingeka ukuze abacwaningi bakwazi ukuqhathanisa imiphumela eqenjini elithole umuthi wocwaningo nemiphumela eqenjini elingawutholanga umuthi wocwaningo kodwa elilandele izinyathelo ezifanayo futhi lathola izinga elifanayo lokunakekelwa.
Ubumfihlo, Ukuyeka Ukubamba Iqhaza, Izindleko, Nemvume
Kwenzekani emininingwaneni yami?
Amathimba ocwaningo ahlonipha futhi avikela ubumfihlo bakho futhi ngeke abelane ngolwazi lwakho ngaphandle kwalapho kudingwa umthetho futhi azogcina imininingwane yakho ngamakhodi angakuhlonzi. Ifomu Lemvume Esekelwe Olwazini lizohlinzeka ngolwazi olwengeziwe mayelana nendlela ubumfihlo bakho obuzogcinwa ngayo.
Ngingahoxa ocwaningweni ngemva kokuba ngiqalile?
Ukubamba kwakho iqhaza ocwaningweni lwezokwelapha ukwenza ngokuzithandela ngokuphelele futhi ungase uhoxe noma nini. Uma unquma ukuhoxa ngaphambi kwesikhathi, uzocelwa ukuba wazise ithimba locwaningo ngaphambi kokuba uhoxe. Uzocelwa ukuba ubuyele emtholampilo okungenani kanye ukuze uqedele ukuvakasha kokugcina futhi ubuyise noma yimuphi umuthi wocwaningo ongasetshenziswanga. Ngemvume yakho, ithimba locwaningo lingase likuthinte iminyaka engu-3 kuya kwengu-5 ngemva komthamo wakho wokugcina womuthi wocwaningo.
Ingabe kumele ngikhokhe ukuze ngibambe iqhaza?
Ngeke ukhokhishwe ngokubamba iqhaza. Konke ukuhlola nezinqubo kanye nomuthi walolu cwaningo lwezokwelapha kunikezwa mahhala.
Ingabe ngizokhokhelwa ngokubamba iqhaza/ngizobuyiselwa ngezindleko zokuhamba?
Ngeke ukhokhelwe ngokubamba iqhaza ocwaningweni. Ithimba locwaningo lingakwazisa ngembuyiselo yezindleko obe nazo ngokuya ekuvakasheni kocwaningo uma ufaneleka.
Ingabe udokotela wami kudingeka anginikeze imvume yokubamba iqhaza ocwaningweni lwezokwelapha?
Akudingeki ukuba udokotela wakho akunikeze imvume yokuba ubambe iqhaza. Kodwa-ke, wena noma udokotela wocwaningo, ngemvume yakho, angase athinte udokotela wakho ukuze axoxe naye ngokubamba kwakho iqhaza ngaphambi kokuba uqale, abuze ngomlando wokwelashwa kwakho, futhi agcine udokotela wakho enolwazi lwamuva ngentuthuko yakho.
Mayelana Nocwaningo Lwezokwelapha
Yini ucwaningo lwezokwelapha?
Ucwaningo lwezokwelapha, olwaziwa nangokuthi ucwaningo lokuhlola, luwucwaningo lwezesayensi oluhlola ukuphepha nokusebenza komuthi wocwaningo. Ucwaningo lwezokwelapha lungase lubonise ukuthi umuthi wocwaningo ungcono, uyefana, noma mubi kunokwelashwa okuvamile noma umuthi-mbumbulu ongasebenzi (uyefana nomuthi wocwaningo kodwa awunaso isakhi esisebenzayo). Odokotela abaqeqeshiwe, abahlengikazi, nezinye izazi zokwelapha banomthwalo wokuqhuba ucwaningo. Imithi yocwaningo ingahlolwa kuphela lapho seziqediwe izingcwaningo zokwelapha futhi, uma ibonakala iphephile futhi isebenza, igunyazwe ukuba isetshenziswe ngenjongo ethile. Izinhlangano ezihlukahlukene ezishaya umthetho emazweni ahlukahlukene zizonikeza lesi sigunyazo ngemva kokuhlolisisa. Imithi etholakala ngencwadi kadokotela esetshenziswayo namuhla yaqale yaqinisekiswa ukuthi iphephile futhi iyasebenza phakathi nezingcwaningo zokwelapha.
Ubani ongabamba iqhaza ocwaningweni lwezokwelapha?
Ababambiqhaza kuphela abahlangabezana nazo zonke izimfuneko ezidingekayo zokufanelekela ucwaningo lwezokwelapha abangabamba iqhaza. Ithimba locwaningo lasemtholampilo owukhethayo lizohlola umlando wakho wokwelashwa nemithi oyithathayo lapho lihlola izimfuneko zokufaneleka. Lizonquma ukuthi uyafaneleka yini ukuba ubambe iqhaza ocwaningweni. Ungase futhi ucelwe ukuba unikeze imininingwane ekumarekhodi akho ezokwelapha ukuze ithimba locwaningo linqume ukuthi ungafaneleka yini noma cha.
Yini umuthi wocwaningo?
Umuthi wocwaningo uwumuthi osahlolwa futhi awukakagunyazwa amagunya ashaya umthetho noma ezempilo ukuba usetshenziswe ngencwadi kadokotela.
Reference:
1. Platzbecker U, Fenaux P, Adès L, et al. Proposals for revised IWG 2018 hematological response criteria in patients with MDS included in clinical trials. Blood. 2019;133(10):1020-1030. doi:10.1182/blood-2018-06-857102