Kodi pali aliyense m'banja mwanu, mwina mwana wanu, amene ali ndi vuto lotchedwa Neurofibromatosis Type 1 (NF1)? Mungakhale ndi nkhawa ndi ma neurofibromas (PN) opweteka, ovuta kuchotsa, omwe amabwera ndi vutoli. Koma lero tikulankhula za mankhwala atsopano, odalirika omwe tsopano avomerezedwa kuti agwiritsidwe ntchito kwa akuluakulu ndi ana pochiza vutoli. Amatchedwa Gomekli (mirdametinib).
Kodi Gomekli ndi chiyani? Imagwira ntchito bwanji?
Taganizirani izi, thupi lathu lili ndi njira zosiyanasiyana zolumikizirana kuti maselo akule. Mu NF1, imodzi mwa njirazi zolumikizirana imakhala yogwira ntchito kwambiri, zomwe zimapangitsa kuti pakhale zotupa kuzungulira mitsempha. Nthawi zina zotupazi zimakula mozungulira madera ofunikira monga mitsempha, mitsempha yamagazi, ndi ziwalo zamkati, zomwe zimapangitsa kuti zikhale zovuta kwambiri kuzichotsa mwa opaleshoni, ndipo nthawi zina sizingatheke.
Izi ndi zomwe Gomekli amachita. Zimaletsa ma enzyme awiri m'thupi lathu otchedwa MEK1 ndi MEK2. Ma enzyme amenewa ndi omwe amatumiza zizindikiro zoti zotupazo ziyenera kukula. Choncho Gomekli akamayimitsa njira ya zizindikirozo, zotupazo zimachepa, ndipo nthawi zina zotupazo zimachepa ndikuyamba kuchepa . Mwachidule, iyi ndi njira ina yabwino yothandizira anthu omwe sangathe kuchitidwa opaleshoni.
Kodi mumagwiritsa ntchito bwanji mankhwalawa?
Dokotala wanu adzakupatsani mlingo woyenera wa Gomekli kwa inu kapena mwana wanu, kutengera kutalika ndi kulemera kwanu .
Chithandizochi nthawi zambiri chimachitika mkati mwa masiku 28.
- Muyenera kumwa mankhwalawa kawiri patsiku, maola 12 aliwonse .
- Muyenera kumwa mankhwala motere kwa masiku 21 motsatizana .
- Kenako muyenera kumwa mankhwalawo kwa masiku 7 .
- Masiku 28 akatha, nthawi yatsopano imayambanso.
Gomekli imapezeka m'ma capsules. Komabe, kwa iwo omwe akuvutika kumeza ma capsules, palinso piritsi lokoma ngati mphesa lomwe lingasungunuke m'madzi ndikumwa. Umu ndi momwe mungapangire:
1. Ikani chiwerengero cha mapiritsi omwe dokotala wakupatsani mu kapu yoyezera mankhwala.
2. Onjezani madzi okwana mamililita 5 kapena 10.
3. Zungulirani kapu kwa mphindi ziwiri kapena zinayi mpaka mapiritsi asungunuke kwathunthu. Akasungunuka, madziwo amasanduka oyera ndipo amaoneka ngati mkaka pang'ono.
4. Imwani nthawi yomweyo kuchokera m'kapu. Kapena mutha kuyamwa ndi syringe yakumwa .
5. Mukamaliza kumwa, onjezerani madzi ena 5-10 ml mu kapu yomweyo, sakanizani, ndipo imwaninso. Izi zithandiza mankhwala otsalawo kulowa m'thupi.
6. Ngati simunamwe pasanathe mphindi 30 mutapanga, tayani madzi otsalawo.
Kodi kafukufuku akunena chiyani za kupambana kwa mankhwala a Gomekli?
Kugwira ntchito bwino komanso chitetezo cha mankhwalawa kwatsimikiziridwa mu kafukufuku wachipatala wotchedwa ReNeu. Kafukufukuyu adakhudza ana ndi akulu 111 azaka ziwiri kapena kuposerapo omwe anali ndi zotupa za PN zosagwira ntchito.
Zotsatira zake n’zolimbikitsa kwambiri.
| Zotsatira | Akuluakulu | Ana |
|---|---|---|
| Kuchepa kwa kukula kwa chotupa ndi osachepera 20%. | 41% | 52% |
| Zotsatira zake zinatenga miyezi 12 kapena kuposerapo kwa anthu oposa 88% omwe anafunsidwa. | 88% | 90% |
Chofunika kwambiri ndichakuti zotsatira izi zayamba kuonekera patangopita miyezi inayi kuchokera pamene chithandizo chayamba. Nthawi zambiri zimatenga pafupifupi miyezi 7-8 kuti muwone zotsatira zoyamba.
Koma kumbukirani, zotsatira za maphunzirowa sizifanana kwa aliyense . Zotsatira zake zimatha kusiyana malinga ndi momwe zinthu zilili.
Kodi mumadziwa bwanji ngati mankhwalawo akugwira ntchito?
Njira yaikulu yodziwira izi ndi kudzera mu MRI scans yomwe dokotala wanu angakupatseni. Izi zitha kuwona ngati zotupa zikuchepa kukula kwake.
Komanso, mudzayamba kuona kusiyana kwanu nokha.
- Kuchepetsa ululu: Ululu woyambitsidwa ndi chotupacho umachepa kwambiri.
- Kukhala wokhoza kuyenda bwino: Ngati munali ndi vuto loyenda chifukwa cha zotupa, izi zidzachepa ndipo zidzakhala zosavuta kuchita ntchito za tsiku ndi tsiku.
- Kukweza moyo wabwino:Ponseponse, ndayamba kumva bwino kuposa kale.
Mu kafukufukuyu, zotsatira zabwino, monga kuchepetsa ululu, zidawoneka ngakhale patatha miyezi itatu ya chithandizo.
Kodi zotsatirapo zoyipa kwambiri ndi ziti?
Monga mankhwala ena aliwonse, Gomekli ingayambitse zotsatira zina zoyipa. Komabe, zambiri mwa izi zitha kuthandizidwa.
| Zotsatira zoyipa zofala | Zinthu zosavuta kusamalira |
|---|---|
| Kutupa pakhungu, nseru/kusanza, kutsegula m'mimba, kupweteka kwa minofu ndi mafupa, kutopa. |
|
| Kwa ana, kupweteka m'mimba, kufiira/kutupa kwa khungu lozungulira misomali, ndi mavuto a mtima zingachitikenso. | Uzani dokotala wanu nthawi yomweyo za zizindikiro izi , makamaka ngati muli ndi vuto la mtima. |
Chofunika kwambiri: Ngati mukukumana ndi zotsatirapo zilizonse zoyipa, ngakhale zitakhala zazing'ono, onetsetsani kuti mwauza dokotala wanu . Iye angachepetse mlingo, asiye kumwa mankhwalawo kwakanthawi, kapena kukupatsani mankhwala ena kuti achepetse zotsatirapo zake.
Zinthu zina zapadera zoti mudziwe zokhudza mankhwalawa
Pali zinthu zingapo zofunika kuziganizira musanayambe Gomekli komanso panthawi ya chithandizo.
1. Kuwona: Mankhwalawa nthawi zina amatha kukhudza maso. Chifukwa chake, musanayambe kulandira chithandizo,Muyenera kuyesedwa maso mokwanira. Muyeneranso kuyesedwa maso anu monga momwe dokotala wanu wanenera panthawi ya chithandizo. Ngati mukukumana ndi zizindikiro monga kusawona bwino, ziuzeni nthawi yomweyo.
2. Kugwira ntchito kwa mtima: Kuyezetsa mtima kumachitika musanayambe kumwa mankhwala, omwe amayesa kugwira ntchito kwa mtima. Izi zimachitika miyezi itatu iliyonse chaka choyamba cha chithandizo.
3. Mimba: Mankhwalawa akhoza kukhala oopsa kwa mwana wosabadwayo .
- Ngati ndinu mkazi amene ali ndi mwayi wobereka, mudzapatsidwa mayeso a mimba musanayambe kulandira chithandizo. Muyenera kugwiritsa ntchito njira yolerera yothandiza kwambiri panthawi ya chithandizo komanso kwa milungu 6 mutasiya kumwa mankhwala.
- Ngati ndinu mwamuna, muyenera kugwiritsa ntchito njira zolerera zogwira mtima panthawi ya chithandizo komanso kwa miyezi itatu mutasiya kumwa mankhwala. Lankhulani ndi dokotala wanu za izi momasuka.
Uthenga Wopita Nawo Kunyumba
- Gomekli (mirdametinib) ndi mankhwala atsopano ovomerezeka kuti agwiritsidwe ntchito mwa akuluakulu ndi ana omwe ali ndi zotupa zosachiritsika (PN) zokhudzana ndi matenda a Neurofibromatosis Type 1 (NF1).
- Izi zimalepheretsa zizindikiro zofunika kuti chotupa chikule, zomwe zimathandiza kuti chotupacho chichepe ndikuchepetsa ululu.
- Ndikofunikira kwambiri kuti dokotala wanu aziyang'anira maso, mtima, ndi MRI nthawi zonse.
- Zotsatirapo zake zingachitike, koma zambiri mwa izo zimatha kuthetsedwa. Uzani dokotala wanu nthawi yomweyo ngati pali vuto lililonse.
- Musayambe, kusiya, kapena kusintha mlingo wa mankhwala popanda upangiri wa dokotala.
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