So obi wɔ w’abusua mu, ebia wo ba, a ɔwɔ yare bi a wɔfrɛ no Neurofibromatosis Type 1 (NF1)? Ebia wobɛhaw wo ho wɔ plexiform neurofibromas (PN) a ɛyɛ yaw, ɛyɛ den sɛ wobeyi afi hɔ, a ɛka tebea yi ho no ho. Nanso ɛnnɛ yɛreka aduru foforo bi a ɛhyɛ bɔ a mprempren wɔapene so sɛ wɔmfa nni dwuma wɔ mpanyimfo ne mmofra mu mfa nsa tebea no ho asɛm. Wɔfrɛ no Gomekli (mirdametinib).
Dɛn ne Gomekli? Ɔkwan bɛn so na ɛyɛ adwuma?
Susuw ho hwɛ, ɛsono akwan horow a yɛn nipadua no fa so de sɛnkyerɛnne kwan so ma nkwammoaa nyin. Wɔ NF1 mu no, saa nsɛnkyerɛnne akwan yi biako yɛ adwuma boro so, na ɛma akisikuru atwa ntini ahorow no ho ahyia. Ɛtɔ mmere bi a saa akisikuru yi nyin twa mmeae a ɛho hia te sɛ ntini, mogya ntini, ne akwaa a ɛwɔ nipadua no mu ho hyia, na ɛma ɛyɛ den yiye sɛ wobeyi afi hɔ wɔ oprehyɛn mu, na ɛtɔ mmere bi a ɛrentumi nyɛ yiye.
Eyi ne nea Gomekli yɛ. Ɛsiw enzyme abien a ɛwɔ yɛn nipadua mu a wɔfrɛ no MEK1 ne MEK2 ano. Saa enzymes yi na ɛde nsɛnkyerɛnne a ɛkyerɛ sɛ ɛsɛ sɛ akisikuru no nyin no kɔ. Enti sɛ Gomekli gyae saa sɛnkyerɛnne kwan no a, akisikuru no nyin kakraa bi, na ɛtɔ mmere bi a akisikuru no so tew na efi ase tew . Sɛ yɛbɛka no tiawa a, eyi yɛ ayaresa foforo a eye ma nnipa a wontumi nyɛ wɔn oprehyɛn.
Wode saa aduru yi di dwuma dɛn?
Wo duruyɛfo begyina wo tenten ne wo mu duru so akyerɛ Gomekli dodow a ɛfata ma wo anaa wo ba .
Wɔtaa yɛ saa ayaresa yi wɔ nnafua 28 kyinhyia mu.
- Ɛsɛ sɛ wonom saa aduru yi mprenu da biara, nnɔnhwerew 12 biara .
- Ɛsɛ sɛ wonom aduru no wɔ saa kwan yi so nnafua 21 a ɛtoatoa so .
- Afei ɛsɛ sɛ wonom aduru no nnafua 7 .
- Sɛ nnafua 28 no wie a, kyinhyia foforo fi ase bio.
Gomekli ba wɔ capsules mu. Nanso, wɔ wɔn a ɛyɛ den ma wɔn sɛ wɔbɛmene capsules no fam no, tablet bi a ɛyɛ bobe dɛ nso wɔ hɔ a wobetumi apete nsu mu na wɔanom. Sɛnea wɔyɛ no ni:
1. Fa nnuru dodow a oduruyɛfo no akyerɛw ama no gu aduru susuw kuruwa mu.
2. Fa nsuo mililita 5 anaa 10 gu mu.
3. Fa kuruwa no di akɔneaba bɛyɛ simma abien kosi anan kosi sɛ aduru no bɛbɔ koraa. Sɛ wɔpete wie a, nsu no bɛyɛ fitaa na ayɛ te sɛ nufusu kakra.
4. Nom no ntɛm ara fi kuruwa no mu. Anaasɛ wubetumi de syringe a wɔde ano anom anom .
5. Sɛ wonom wie a, fa nsuo 5-10 ml foforɔ gu kuruwa korɔ no ara mu, kankan, na nom ɛno nso. Eyi bɛboa ma aduru a aka no akɔ nipadua no mu.
6. Sɛ woannom wɔ simma 30 akyi bere a woayɛ no a, tow nsu a aka no gu.
Dɛn na nhwehwɛmu ahorow ka fa sɛnea Gomekli aduru no dii yiye no ho?
Wɔakyerɛ sɛnea aduru yi yɛ adwuma yiye na ahobammɔ wom wɔ ayaresabea nhwehwɛmu bi a wɔfrɛ no ReNeu nhwehwɛmu mu. Ɛfa mmofra ne mpanyimfo 111 a wɔadi mfe 2 ne akyi a wɔwɔ PN akisikuru a wontumi nyɛ ho oprehyɛn ho.
Nea afi mu aba no hyɛ nkuran ankasa.
| Nsunsuansoɔ | Mpanyimfo | Mmɔfra |
|---|---|---|
| Anyɛ yiye koraa no, akisikuru no kɛse a ɛso tew 20%. | 41% na ɛwɔ hɔ. | 52% na ɛwɔ hɔ. |
| Nea efii mu bae no dii asram 12 anaa nea ɛboro saa maa bɛboro 88% a wobisabisaa wɔn nsɛm no. | 88% na ɛwɔ hɔ. | 90% na ɛwɔ hɔ. |
Ade a ɛho hia sen biara ne sɛ nea afi mu aba yi afi ase reda adi wɔ asram 4 pɛ mu wɔ bere a wɔafi ayaresa ase akyi. Mpɛn pii no egye bɛyɛ asram 7-8 ansa na woahu nea edi kan a efi mu ba.
Nanso kae sɛ nea afi nhwehwɛmu ahorow yi mu aba no nyɛ pɛ mma obiara . Ebia nea ebefi mu aba no bɛsono sɛnea wo tebea te.
Wobɛyɛ dɛn ahu sɛ aduru no reyɛ adwuma anaa?
Ɔkwan titiriw a wobɛfa so ahu eyi ne MRI mfonini ahorow a wo duruyɛfo bɛkra. Eyinom betumi ahwɛ sɛ ebia akisikuru no kɛse so retew anaa.
Nea ɛka ho no, w’ankasa wubefi ase ahu nsonsonoe no.
- Ɛyaw a wɔtew so: Ɛyaw a akisikuru no de ba no so tew kɛse.
- Sɛnea wubetumi akɔ baabiara yiye: Sɛ na ɛyɛ den ma wo sɛ wobɛtu esiane akisikuru nti a, eyinom so bɛtew na ɛbɛyɛ mmerɛw sɛ wobɛyɛ da biara da nnwuma.
- Asetra pa a wɔbɛma atu mpɔn:Sɛ yɛka ne nyinaa bom a, m’afi ase te nka sɛ me ho atɔ me sen kan no.
Wɔ nhwehwɛmu no mu no, wohuu nneɛma pa a efii mu bae, te sɛ ɛyaw a ɛso tew, wɔ bɛyɛ asram 3 ayaresa akyi mpo.
Dɛn ne nneɛma bɔne a ɛtaa ba?
Te sɛ aduru biara no, Gomekli betumi de ɔhaw ahorow bi aba. Nanso, wobetumi adi eyinom mu dodow no ara ho dwuma.
| Nneɛma bɔne a ɛtaa ba | Nneɛma a ɛnyɛ den a ɛsɛ sɛ wodi ho dwuma |
|---|---|
| Wora mu akisikuru, akisikuru/akisikuru, akisikuru, ntini ne nkwaa mu yaw, ɔbrɛ. |
|
| Wɔ mmofra mu no, yafunu mu yaw, honam ani a ɛyɛ kɔkɔɔ/honhon a atwa nnadewa no ho ahyia, ne koma mu haw nso betumi aba. | Fa saa sɛnkyerɛnne ahorow yi mu biara bɔ wo duruyɛfo amanneɛ ntɛm ara , titiriw sɛ wowɔ komayare a. |
Nea ɛho hia sen biara: Sɛ wunya ɔhaw biara, sɛ ɛyɛ nketenkete mpo a, hwɛ hu sɛ wobɛka akyerɛ wo duruyɛfo . Ebia ɔbɛtew dodow a wɔde ma no so, agyae aduru no nom kakra, anaasɛ ɔbɛma wo aduru foforo a wode besiw nea efi mu ba no ano.
Nneɛma titiriw afoforo a ɛsɛ sɛ wuhu fa saa aduru yi ho
Nneɛma pii wɔ hɔ a ɛsɛ sɛ wususuw ho ansa na woafi Gomekli ase ne bere a wɔreyɛ ayaresa no.
1. Aniwa a ɛhwɛ ade: Ɛtɔ mmere bi a, saa aduru yi tumi ka aniwa. Enti, ansa na wobefi ayaresa ase no, .Ɛsɛ sɛ woyɛ w’ani mu nhwehwɛmu a edi mũ. Ɛsɛ sɛ wohwɛ w’ani nso sɛnea wo duruyɛfo kyerɛ wo bere a wɔreyɛ ayaresa no. Sɛ wuhu sɛnkyerɛnne biara te sɛ aniwa a ɛyɛ mmerɛw a, bɔ ho amanneɛ ntɛm ara.
2. Koma dwumadi: Wɔyɛ echocardiogram ansa na wɔafi aduru no ase, na ɛno na ɛkyerɛ sɛnea koma no yɛ adwuma. Wɔsan yɛ eyi asram 3 biara wɔ afe a edi kan a wɔde sa yare no mu.
3. Nyinsɛn: Saa aduru yi betumi apira akokoaa no .
- Sɛ woyɛ ɔbea a wubetumi awo a, wɔbɛma wo nyinsɛn mu nhwehwɛmu ansa na wɔafi ayaresa ase. Ɛsɛ sɛ wode awo ano aduru a etu mpɔn kɛse di dwuma bere a woreyɛ ayaresa no ne adapɛn 6 bere a woagyae aduru no akyi.
- Sɛ woyɛ ɔbarima a, ɛsɛ sɛ wode awo ano aduru a etu mpɔn di dwuma bere a woreyɛ ayaresa no ne asram 3 bere a woagyae aduru no akyi . Wo ne wo duruyɛfo nka eyi ho asɛm pefee.
Nkrasɛm a Wɔde Kɔ Fie
- Gomekli (mirdametinib) yɛ aduru foforo a wɔapene so sɛ wɔmfa nni dwuma wɔ mpanyimfo ne mmofra a wɔwɔ akisikuru a wontumi nyɛ oprehyɛn (PN) a ɛne tebea a ɛne Neurofibromatosis Type 1 (NF1) wɔ abusuabɔ no mu.
- Eyi siw nsɛnkyerɛnne a ehia ma akisikuru no nyin no kwan, na ɛboa ma akisikuru no so tew na ɛyaw no so tew.
- Ɛho hia yiye sɛ wobɛyɛ w’ani, koma, ne MRI nhwehwɛmu daa wɔ wo duruyɛfo hwɛ ase bere a wɔreyɛ ayaresa no.
- Ebia nsunsuanso bɔne bɛba, nanso emu dodow no ara yɛ nea wotumi di ho dwuma. Ka ɔhaw biara a ɛyɛ wo yaw kyerɛ wo duruyɛfo ntɛm ara.
- Ɛnsɛ sɛ wufi ase, gyae, anaa wosesa nnuru dodow da a wunni aduruyɛ mu afotu biara.
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