Ingabe ukhona emndenini wakho, mhlawumbe ingane yakho, onesifo esibizwa ngokuthi i-Neurofibromatosis Type 1 (NF1)? Ungase ukhathazeke nge-plexiform neurofibromas (PN) ebuhlungu, okunzima ukuyisusa, eza nalesi simo. Kodwa namuhla sikhuluma ngomuthi omusha, othembisayo osevunyelwe ukusetshenziswa kubantu abadala nezingane ukwelapha lesi simo. Ubizwa ngokuthi i-Gomekli (mirdametinib).
Iyini iGomekli? Isebenza kanjani?
Cabanga ngakho, imizimba yethu inezindlela ezahlukene zokudlulisela izimpawu ukuze amaseli akhule. Ku-NF1, enye yalezi zindlela zokudlulisela izimpawu isebenza ngokweqile, okuholela ekwakhekeni kwezimila ezizungeze imizwa. Lezi zimila ngezinye izikhathi zikhula zizungeze izindawo ezibalulekile njengemizwa, imithambo yegazi, kanye nezitho zangaphakathi, okwenza kube nzima kakhulu ukuzisusa ngokuhlinzwa, futhi ngezinye izikhathi kungenzeki.
Yilokhu okwenziwa yiGomekli. Ivimba ama-enzyme amabili emzimbeni wethu abizwa ngokuthi i-MEK1 kanye ne-MEK2. Lawa ma-enzyme yiwo athumela izimpawu zokuthi ama-tumors adinga ukukhula. Ngakho-ke lapho iGomekli imisa leyo ndlela yesignali, ama-tumors akhula kancane, futhi ngezinye izikhathi ama-tumors ayancipha futhi aqale ukuncipha . Kalula nje, lokhu kuyindlela enhle yokwelapha ehlukile kubantu abangakwazi ukuhlinzwa.
Uyisebenzisa kanjani le mithi?
Udokotela wakho uzonquma umthamo ofanele we-Gomekli kuwe noma enganeni yakho, ngokusekelwe ekuphakameni nasesisindoni sakho .
Lokhu kwelashwa kuvame ukwenziwa ngomjikelezo wezinsuku ezingu-28.
- Kufanele uphuze lo muthi kabili ngosuku, njalo emahoreni ayi-12 .
- Udinga ukuthatha umuthi ngale ndlela izinsuku ezingu-21 zilandelana .
- Ngemuva kwalokho kufanele uthathe umuthi izinsuku eziyi-7 .
- Uma izinsuku ezingu-28 seziphelile, umjikelezo omusha uqala futhi.
I-Gomekli iza ngama-capsule. Kodwa-ke, kulabo abanenkinga yokugwinya ama-capsule, kukhona nephilisi elinongwe ngamagilebhisi elingancibilikiswa emanzini bese lithathwa. Nansi indlela yokulenza:
1. Faka inani lamaphilisi anikezwe udokotela enkomishini yokulinganisa umuthi.
2. Faka amamililitha amanzi angu-5 noma angu-10 kuyo.
3. Zungeza indebe cishe imizuzu emibili kuya kwemine kuze kube yilapho amaphilisi esencibilikile ngokuphelele. Uma esencibilikile, uketshezi luzophenduka lube mhlophe futhi lubukeke lufana nobisi kancane.
4. Phuza ngokushesha enkomishini. Noma ungayimunca ngesirinji somlomo .
5. Uma usuqedile ukuphuza, engeza amanye amanzi angu-5-10 ml enkomishini efanayo, uvuselele, bese uphuza nawo. Lokhu kuzosiza umuthi osele ukuthi ungene emzimbeni.
6. Uma ungayiphuzi ingakapheli imizuzu engama-30 uyiphekile, lahla uketshezi olusele.
Izifundo zithini ngempumelelo yomuthi iGomekli?
Ukusebenza kahle nokuphepha kwalo muthi kuqinisekiswe ocwaningweni lwezokwelapha olubizwa ngokuthi ucwaningo lwe-ReNeu. Lwabandakanya izingane nabantu abadala abangu-111 abaneminyaka engu-2 nangaphezulu abanezimila ze-PN ezingasebenzi.
Imiphumela iyakhuthaza ngempela.
| Umphumela | Abantu abadala | Izingane |
|---|---|---|
| Ukuncipha kosayizi wesimila okungenani ngo-20%. | 41% | 52% |
| Imiphumela yahlala izinyanga eziyi-12 noma ngaphezulu kwabangaphezu kuka-88% wabaphenduli. | 88% | 90% |
Into ebaluleke kakhulu ukuthi le miphumela iqale ukuvela ezinyangeni ezine nje kuphela ngemuva kokuqala ukwelashwa. Ngokuvamile kuthatha cishe izinyanga ezingu-7-8 ukubona imiphumela yokuqala.
Kodwa khumbula, imiphumela yalezi zifundo ayifani kuwo wonke umuntu . Imiphumela ingahluka kuye ngesimo sakho.
Wazi kanjani ukuthi umuthi uyasebenza?
Indlela eyinhloko yokwazi lokhu iwukusebenzisa ama-MRI scan udokotela wakho azowayala. Lawa angahlola ukuthi amathumba ayancipha yini ngobukhulu.
Ngaphezu kwalokho, uzoqala ukuqaphela umehluko wena ngokwakho.
- Ukunciphisa ubuhlungu: Ubuhlungu obubangelwa yi-tumor buncishiswe kakhulu.
- Ukukwazi ukuhambahamba kangcono: Uma ubunenkinga yokuhamba ngenxa yezimila, lokhu kuzoncipha futhi kuzoba lula ukwenza imisebenzi yansuku zonke.
- Ukuthuthukisa ikhwalithi yokuphila:Sekukonke, sengiqala ukuzizwa ngingcono kunakuqala.
Kulolu cwaningo, imiphumela emihle, njengokunciphisa ubuhlungu, yabonakala ngisho nangemva kwezinyanga ezicishe zibe ntathu zokwelashwa.
Yimiphi imiphumela emibi evame kakhulu?
Njenganoma yimuphi umuthi, i-Gomekli ingabangela imiphumela emibi. Kodwa-ke, eminingi yale miphumela ingalawulwa.
| Imiphumela emibi evamile | Izinto ezilula okufanele uziphathe |
|---|---|
| Ukuqubuka kwesikhumba, isicanucanu/ukuhlanza, isifo sohudo, ubuhlungu bemisipha namalunga, ukukhathala. |
|
| Ezinganeni, ubuhlungu besisu, ukubomvu/ukuvuvukala kwesikhumba esizungeze izinzipho, kanye nezinkinga zenhliziyo nakho kungase kwenzeke. | Bika noma yiziphi zalezi zimpawu kudokotela wakho ngokushesha , ikakhulukazi uma unezinkinga zenhliziyo. |
Okubaluleke kakhulu: Uma uhlangabezana nanoma yimiphi imiphumela emibi, noma ngabe mincane, qiniseka ukuthi utshela udokotela wakho . Angase ehlise umthamo, ayeke ukuthatha umuthi isikhashana, noma akunike omunye umuthi wokulawula imiphumela emibi.
Ezinye izinto ezikhethekile okufanele uzazi ngalo muthi
Kunezinto eziningana okufanele uzicabangele ngaphambi kokuqala i-Gomekli nangesikhathi sokwelashwa.
1. Amehlo: Lo muthi ungathinta amehlo ngezinye izikhathi. Ngakho-ke, ngaphambi kokuqala ukwelashwa,Kufanele uhlolwe amehlo ngokuphelele. Kufanele futhi uhlolwe amehlo akho njengoba kuqondiswe udokotela wakho ngesikhathi sokwelashwa. Uma uhlangabezana nanoma yiziphi izimpawu ezifana nokungaboni kahle, zibike ngokushesha.
2. Ukusebenza kwenhliziyo: Kwenziwa i -echocardiogram ngaphambi kokuqala umuthi, olinganisa ukusebenza kwenhliziyo. Lokhu kuphindaphindwa njalo ezinyangeni ezi-3 ngonyaka wokuqala wokwelashwa.
3. Ukukhulelwa: Lo muthi ungase ube yingozi embungwini .
- Uma ungowesifazane onethuba lokuzala, uzohlolwa ngaphambi kokuqala ukwelashwa. Kumelwe usebenzise uhlobo lokuvimbela inzalo olusebenza kahle kakhulu ngesikhathi sokwelashwa kanye namasonto ayisithupha ngemva kokuyeka imithi.
- Uma uyindoda, kufanele usebenzise indlela yokuvimbela inzalo esebenzayo ngesikhathi sokwelashwa kanye nezinyanga ezi-3 ngemuva kokuyeka umuthi. Khuluma nodokotela wakho ngalokhu ngokukhululekile.
Umlayezo Wokuya Nawe Ekhaya
- I-Gomekli (mirdametinib) iyindlela entsha yokwelapha evunyelwe ukusetshenziswa kubantu abadala nezingane ezinezimila ezingasebenzi kahle (PN) ezihlotshaniswa nesimo se-Neurofibromatosis Type 1 (NF1).
- Lokhu kuvimbela izimpawu ezidingekayo ekukhuleni kwesimila, kusiza isimila ukuthi sinciphe futhi sinciphise ubuhlungu.
- Kubaluleke kakhulu ukuba nokuhlolwa kwamehlo, kwenhliziyo, kanye ne-MRI njalo ngaphansi kokuqondisa kukadokotela wakho ngesikhathi sokwelashwa.
- Imiphumela emibi ingase ivele, kodwa eminingi yayo iyalawuleka. Tshela udokotela wakho ngokushesha nganoma yikuphi ukungakhululeki.
- Akufanele uqale, uyeke, noma ushintshe umthamo wemithi ngaphandle kweseluleko sikadokotela.
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