Ɛnibɔdi na yu famili, sɔntɛm yu pikin, gɛt wan sik we dɛn kɔl Nyurofibromatosis Tayp 1 (NF1)? Yu kin wɔri bɔt di pen, at fɔ pul, plexiform neurofibromas (PN) we kin kam wit dis kɔndishɔn. Bɔt tide wi de tɔk bɔt wan nyu, prɔmis drɔg we dɛn dɔn gri fɔ yuz naw pan big pipul ɛn pikin dɛn fɔ trit di sik. Dɛn kɔl am Gomekli (mirdametinib).
Wetin na Gomekli? Aw i kin wok?
Tink bɔt am, wi bɔdi gɛt difrɛn say dɛn we de sho se di sɛl dɛn gro. insay NF1, wan pan dεn signal path dεm ya de bi ova aktv, we de mek di tכmכro dεm we de rawnd di nεv dεm de fכm. Sɔntɛnde dɛn tumbu ya kin gro rawnd impɔtant say dɛn lɛk di nɛv dɛn, di blɔd vesel dɛn, ɛn di ɔgan dɛn we de insay, we kin mek i rili at fɔ pul dɛn bay ɔpreshɔn, ɛn sɔntɛnde i nɔ kin izi fɔ pul dɛn.
Dis na wetin Gomekli de du. i de blכk tu εnzym dεm na wi bכdi we dεn kכl MEK1 εn MEK2. dis εnzym dεm na dεn wan dεm we de sεnd di signal dεm we di tכmכro dεm nid fכ gro. So we Gomekli stɔp da signal path de, di tumor dɛn nɔ kin gro bɛtɛ, ɛn sɔntɛnde di tumor dɛn kin shrink ɛn bigin fɔ shrink . Fɔ tɔk am simpul wan, dis na fayn ɔda tritmɛnt fɔ pipul dɛn we nɔ ebul fɔ du ɔpreshɔn.
Aw yu kin yuz dis mɛrɛsin?
Yu dɔktɔ go disayd di rayt doz fɔ Gomekli fɔ yu ɔ yu pikin, bay yu ayt ɛn wet .
Dɛn kin du dis tritmɛnt insay 28 dez saykl.
- Yu fɔ tek dis mɛrɛsin tu tɛm insay di de, ɛvri 12 awa .
- Yu nid fɔ tek di mɛrɛsin dis we fɔ 21 dez insay wan row .
- Dɔn yu fɔ tek di mɛrɛsin fɔ 7 dez .
- We di 28 dez dɔn, wan nyu saykl kin bigin bak.
Gomekli de kam insay kapsul. Bɔt fɔ di wan dɛn we nɔ kin izi fɔ swɛla kapsul, wan tablɛt de bak we gɛt grep flawa we dɛn kin sɔlv insay wata ɛn tek am. Na dis na aw fɔ mek am:
1. Put di nɔmba fɔ di pils we di dɔktɔ gi yu insay wan kɔp fɔ mɛzhɔ mɛrɛsin.
2. Ad 5 ɔ 10 mililita wata pan am.
3. Swirl di kɔp fɔ lɛk tu to 4 minit so te di tablɛt dɛn dɔn sɔlv ɔl. We di wata dɔn sɔlv, i go tɔn wayt ɛn luk lɛk milk smɔl.
4. Drink am rait away from di kop. Ɔ yu kin sok am wit sirinj we yu kin yuz fɔ it .
5. Afta yu dɔn drink, ad ɔda 5-10 ml wata to di sem kɔp, stir, ɛn drink dat bak. Dis go ɛp di mɛrɛsin we lɛf fɔ go insay di bɔdi.
6. If yu no drink am insaid 30 minit afta yu mek am, trowe di likid we lef.
Wetin stɔdi dɛn se bɔt di sakrifays we di Gomekli drɔg gɛt?
Dɛn dɔn kɔnfyus di ɛfifikɛshɔn ɛn sef fɔ dis drɔg insay wan klinik stɔdi we dɛn kɔl di ReNeu stɔdi. I involv 111 pikin ɛn big pipul dɛn we ol 2 ia ɔ pas dat wit PN tɔŋ dɛn we dɛn nɔ go ebul fɔ ɔpreshɔn.
Di tin dɛn we kin apin kin rili ɛnkɔrej wi.
| Rizɔlt | Big pipul dɛn | Pikin dɛn |
|---|---|---|
| di shrinkage fכ di tכmכro saiz bay at le 20%. | 41% . | 52% . |
| Di rizɔlt bin las fɔ 12 mɔnt ɔ pas dat fɔ pas 88% pan di wan dɛn we ansa. | 88% . | 90% . |
Di tin we impɔtant pas ɔl na dat dɛn rizɔlt ya dɔn bigin fɔ apia insay lɛk 4 mɔnt afta dɛn dɔn bigin fɔ trit am. I kin tek lɛk 7-8 mɔnt fɔ si di fɔs rizɔlt.
Bɔt mɛmba se di tin dɛn we dɛn stɔdi dɛn ya dɔn du nɔto di sem fɔ ɔlman . De rizulyt kin difrɛn difrɛn wan bay aw yu de si yu.
Aw yu go no if di mɛrɛsin de wok?
Di men we fɔ no dis na tru MRI skan we yu dɔktɔ go ɔda. dis kin chεk fכ si if di tכmכro dεm de shrink in saiz.
Plɛs, yu go bigin fɔ notis di difrɛns yusɛf.
- di pen we de ridyus: Di pen we di tכmכro de mek de rεdכks bכku bכku wan.
- Fɔ ebul fɔ muv fayn fayn wan: If yu bin gɛt prɔblɛm fɔ muv bikɔs ɔf di tumbu, dɛn tin ya go ridyus ɛn i go izi fɔ du di wok dɛn we yu de du ɛvride.
- Fɔ mek yu liv bɛtɛ layf:Ɔl togɛda, a dɔn bigin fɔ fil fayn pas aw a bin de fil bifo.
Insay di stɔdi, dɛn si gud rizɔlt, lɛk fɔ ridyus pen, ivin afta lɛk 3 mɔnt we dɛn dɔn trit am.
Wetin na di bad bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, Gomekli kin mek sɔm sayd ɛfɛkt dɛn. Bɔt, dɛn kin ebul fɔ kɔntrol bɔku pan dɛn tin ya.
| Kɔmɔn sayd ɛfɛkt dɛn | Simpul tin dɛn fɔ manej |
|---|---|
| Skin rash, nɔs/vomit, dayarɛa, mɔsul ɛn jɔyn pen, taya. |
|
| pan pikin dεm, bεlε de pen, di skin we de rawnd di nel dεm de rεd/swel, εn at prכblεm kin apin bak. | Ripɔt ɛni wan pan dɛn sik ya to yu dɔktɔ wantɛm wantɛm , mɔ if yu gɛt at prɔblɛm. |
Di tin we impɔtant pas ɔl: If yu gɛt ɛni bad bad tin we kin apin to yu, ilɛksɛf na smɔl tin, mek shɔ se yu tɛl yu dɔktɔ . I kin put di mɛrɛsin dɔŋ, i kin stɔp fɔ tek di mɛrɛsin fɔ sɔm tɛm, ɔ gi yu difrɛn mɛrɛsin fɔ kɔntrol di bad tin dɛn we kin apin to yu.
Ɔda spɛshal tin dɛn fɔ no bɔt dis mɛrɛsin
Bɔku tin dɛn de fɔ tink bɔt bifo yu bigin Gomekli ɛn we yu de du tritmɛnt.
1. Ays: Dis mɛrɛsin kin afɛkt di yay sɔntɛnde. So, bifo yu bigin fɔ trit am, .Yu fɔ gɛt kɔmplit ay ɛgzam. Yu fɔ mek dɛn chɛk yu yay bak lɛk aw yu dɔktɔ tɛl yu we dɛn de trit yu. If yu gɛt ɛni sayn lɛk we yu nɔ de si fayn, ripɔt am wantɛm wantɛm.
2. At wok: Dɛn kin du ɛkokadiogram bifo dɛn bigin di mɛrɛsin, we de sho aw di at de wok. Dis kin ripit ɛvri 3 mɔnt fɔ di fɔs ia we dɛn de trit am.
3. Bεlε: Dis mεrεsin kin bεn di pikin we de insay di bεlε .
- If yu na uman we ebul fɔ bɔn pikin, dɛn go gi yu bɛlɛ tɛst bifo yu bigin fɔ trit yu. Yu fɔ yuz wan we we rili wok fɔ mek yu nɔ bɔn pikin we yu de trit yu ɛn fɔ 6 wik afta yu dɔn stɔp di mɛrɛsin.
- If yu na man, yu fɔ yuz fayn fayn bɔn kɔntrol we yu de trit yu ɛn fɔ 3 mɔnt afta yu dɔn stɔp di mɛrɛsin. Tɔk to yu dɔktɔ bɔt dis opin wan.
Mɛsej we dɛn kin kɛr go na os
- Gomekli (mirdametinib) na nyu tritmɛnt we dɛn dɔn gri fɔ yuz fɔ big pipul ɛn pikin dɛn we gɛt inɔpareshɔn tɔmɔs (PN) we gɛt fɔ du wit di kɔndishɔn Nyurofibromatosis Tayp 1 (NF1).
- dis de blכk di signal dεm we dεn nid fכ mek di tכmכro gro, we de εp di tכmכro fכ shrink εn ridyus di pen.
- I rili impɔtant fɔ mek yu de du yu yay, at, ɛn MRI skan ɔltɛm ɔnda di sɔpɔt we yu dɔktɔ de gi we yu de trit yu.
- Sɔm bad bad tin dɛn kin apin, bɔt bɔku pan dɛn kin ebul fɔ kɔntrol. Tɛl yu dɔktɔ wantɛm wantɛm bɔt ɛnitin we nɔ fayn.
- Yu nɔ fɔ ɛva bigin, stɔp, ɔ chenj di doz fɔ di mɛrɛsin if yu nɔ gɛt dɔktɔ advays.
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