Pane mumwe munhu mumhuri yako, pamwe mwana wako, ane chirwere chinonzi Neurofibromatosis Type 1 (NF1) here? Ungave uchinetseka nezve plexiform neurofibromas (PN) inorwadza, yakaoma kubvisa, inouya nechirwere ichi. Asi nhasi tiri kutaura nezvemushonga mutsva, unovimbisa, uyo ikozvino wabvumidzwa kushandiswa muvakuru nevana kurapa chirwere ichi. Unonzi Gomekli (mirdametinib).
Chii chinonzi Gomekli? Chinoshanda sei?
Funga nezvazvo, muviri wedu une nzira dzakasiyana dzekutumira zviratidzo kuti masero akure. MuNF1, imwe yenzira idzi dzekutumira zviratidzo inoshanda zvakanyanya, zvichikonzera kuumbwa kwemabundu akakomberedza tsinga. Mabundu aya dzimwe nguva anokura akatenderedza nzvimbo dzakakosha senge tsinga, mitsipa yeropa, uye nhengo dzemukati, zvichiita kuti zviome kubvisa nekuvhiyiwa, uye dzimwe nguva hazvigoneke.
Izvi ndizvo zvinoitwa naGomekli. Inovhara ma enzyme maviri mumuviri wedu anonzi MEK1 na MEK2. Ma enzyme aya ndiwo anotumira zviratidzo zvekuti mabundu anofanira kukura. Saka kana Gomekli ikamisa nzira iyoyo yezviratidzo, mabundu anokura zvishoma, uye dzimwe nguva mabundu anoderera otanga kuderera . Muchidimbu, iyi inzira yakanaka yekurapa vanhu vasingakwanise kuvhiyiwa.
Mushonga uyu munoshandiswa sei?
Chiremba wako ndiye achasarudza mushonga wakakodzera weGomekli iwe kana mwana wako, zvichienderana nehurefu hwako nehuremu .
Kurapa uku kunowanzoitwa mumazuva makumi maviri nemasere.
- Unofanira kutora mushonga uyu kaviri pazuva, maawa gumi nemaviri ega ega .
- Unofanira kutora mushonga uyu nenzira iyi kwemazuva makumi maviri nerimwe akatevedzana .
- Wobva watora mushonga kwemazuva manomwe .
- Kana mazuva makumi maviri nemasere apera, kutenderera kutsva kunotangazve.
Gomekli inowanikwa mumakapisi. Zvisinei, kune avo vanonetseka nekumedza makapisi, kunewo piritsi rine flavour yemazambiringa rinogona kunyungudutswa mumvura rotorwa. Heino maitiro ekugadzira:
1. Isa huwandu hwemapiritsi akanyorwa nachiremba mukapu yekuyeresa mushonga.
2. Wedzera mamirita mashanu kana gumi emvura.
3. Kutenderedza kapu kwemaminitsi maviri kusvika mana kusvika mapiritsi anyungudika zvachose. Kana anyungudika, mvura yacho inoshanduka kuita chena yoita semukaka.
4. Inwai ipapo ipapo kubva mukapu. Kana kuti munogona kuinwa nesirinjisi yemuromo .
5. Kana wapedza kunwa, wedzera imwe 5-10 ml yemvura mukapu imwe chete, kurunga, wobva wanwawo. Izvi zvichabatsira mushonga wasara kupinda mumuviri.
6. Kana usingainwi mukati memaminitsi makumi matatu kubva pakubika, rasa mvura yasara.
Zvidzidzo zvinoti chii nezvekubudirira kwemushonga weGomekli?
Kushanda uye kuchengetedzeka kwemushonga uyu kwakasimbiswa muchidzidzo chekiriniki chinonzi ReNeu study. Chaisanganisira vana nevakuru zana nerimwe vane makore maviri zvichikwira vane bundu rePN risingarapike.
Mhedzisiro yacho inokurudzira zvechokwadi.
| Mhedzisiro | Vakuru | Vana |
|---|---|---|
| Kuderera kwehukuru hwebundu ne20%. | 41% | 52% |
| Mhedzisiro yacho yakagara kwemwedzi gumi nemiviri kana kupfuura kune vanopfuura 88% yevakapindura. | 88% | 90% |
Chinhu chinonyanya kukosha ndechekuti mhedzisiro iyi yatanga kuoneka mukati memwedzi mina chete mushure mekutanga kurapwa. Kazhinji zvinotora mwedzi 7-8 kuti mhedzisiro yekutanga ionekwe.
Asi yeuka, mhedzisiro yezvidzidzo izvi haina kufanana kune wese munhu . Mhedzisiro yacho inogona kusiyana zvichienderana nemamiriro ako ezvinhu.
Unoziva sei kana mushonga wacho uchishanda?
Nzira huru yekuziva izvi ndeyekushandisa MRI scans iyo chiremba wako acharaira. Izvi zvinogona kutarisa kana bundu riri kudzikira saizi.
Uyezve, iwe pachako uchatanga kuona musiyano wacho.
- Kuderedza marwadzo: Marwadzo anokonzerwa nebundu akaderera zvakanyanya.
- Kukwanisa kufamba-famba zviri nani: Kana waiomerwa nekufamba nekuda kwebundu, izvi zvichadzikira uye zvichave nyore kuita mabasa ezuva nezuva.
- Kuvandudza hupenyu:Zvose zviri kuitika, ndava kutanga kunzwa zviri nani kupfuura kare.
Muchidzidzo ichi, mhedzisiro yakanaka, yakadai sekuderedza marwadzo, yakaonekwa kunyangwe mushure memwedzi mitatu yekurapwa.
Ndezvipi zvinonyanya kukonzera migumisiro yakaipa?
Kufanana nemushonga upi zvawo, Gomekli inogona kukonzera mimwe migumisiro yakaipa. Zvisinei, yakawanda yacho inogona kudzorwa.
| Migumisiro yakajairika | Zvinhu zviri nyore zvekutarisira |
|---|---|
| Mapundu paganda, kuda kurutsa/kurutsa, manyoka, kurwadziwa kwetsandanyama nemapfundo, kuneta. |
|
| Muvana, kurwadziwa mudumbu, kuzvimba kweganda rakatenderedza nzara, uye matambudziko emwoyo zvinogonawo kuitika. | Taura chero chimwe chezviratidzo izvi kuna chiremba wako nekukasika , kunyanya kana uine matambudziko emwoyo. |
Chinonyanya kukosha: Kana ukasangana nemigumisiro yakaipa, kunyangwe iri midiki, iva nechokwadi chekuudza chiremba wako . Anogona kuderedza dose, kurega kutora mushonga kwenguva yakati, kana kukupa mumwe mushonga wekuderedza migumisiro yakaipa.
Zvimwe zvinhu zvakakosha zvekuziva nezvemushonga uyu
Pane zvinhu zvakati wandei zvekufunga nezvazvo usati watanga Gomekli uye panguva yekurapwa.
1. Kuona kwemaziso: Mushonga uyu unogona kukanganisa maziso dzimwe nguva. Saka, usati watanga kurapwa,Unofanira kuongororwa maziso ako zvizere. Unofanirawo kuongororwa maziso ako sezvakarairwa nachiremba wako panguva yekurapwa. Kana ukaona zviratidzo zvakaita sekuona zvisipo, zviudze nekukurumidza.
2. Kushanda kwemoyo: Kuongororwa kwemoyo kunoitwa usati watanga mushonga, uyo unoyera kushanda kwemoyo. Izvi zvinodzokororwa mwedzi mitatu yega yega mugore rekutanga rekurapwa.
3. Kubata pamuviri: Mushonga uyu unogona kukuvadza mwana ari mudumbu .
- Kana uri mukadzi ane mukana wekubereka, uchaongororwa pamuviri usati watanga kurapwa. Unofanira kushandisa nzira yekudzivirira pamuviri inoshanda zvikuru panguva yekurapwa uye kwemavhiki matanhatu mushure mekurega kushandisa mushonga.
- Kana uri murume, unofanira kushandisa nzira dzekudzivirira pamuviri dzinoshanda panguva yekurapwa uye kwemwedzi mitatu mushure mekurega kushandisa mushonga. Taura nachiremba wako nezvazvo pachena.
Mharidzo Yekuenda Nayo Kumba
- Gomekli (mirdametinib) mushonga mutsva unotenderwa kushandiswa muvanhu vakuru nevana vane bundu risingarapike (PN) rine chekuita nechirwere cheNeurofibromatosis Type 1 (NF1).
- Izvi zvinovhara zviratidzo zvinodiwa kuti bundu rikure, zvichibatsira bundu kudzikira uye kuderedza marwadzo.
- Zvakakosha kuti chiremba wako aongorore maziso, mwoyo, uye MRI nguva dzose panguva yekurapwa.
- Migumisiro inogona kuitika, asi yakawanda yacho inorapika. Udza chiremba wako nekukasika kana paine kusanzwa zvakanaka.
- Haufanire kutanga, kurega, kana kuchinja mushonga usina kupiwa mazano nachiremba.
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