Imajin se na wan pat nɔmɔ na yu bɔdi, fɔ ɛgzampul, yu an, yu leg, ɔ wan patikyula say na yu skin, de gro kwik kwik wan pas di ɔda wan dɛn. Dis na wan sik wae nɔr kin pasmak wae dɛn kin bɔn sɔm pipul dɛm wit. Insay mεdikal tεm, wi kin kכl dis grup כf kכndishכn PIK3CA-Related Overgrowth Spectrum, כ PROS fכ sכt. Dis na sɔmtin wae kin rili kɔz bɔrku prɔblɛm fɔ de pɔrsin wae de si am, ɛn bak fɔ de pɔrsin wae de si am. Tide, insay dis atikul, wi go tɔk bɔt wetin na dis PROS ɛn bɔt Vijoice, di fɔs drɔg we dɛn dɔn gri fɔ spɛshal fɔ dis kɔndishɔn.
Wetin rili na PROS?
Fɔ tɔk am simpul wan, PROS na wan jenɛtik kɔndishɔn. Wi ɔl gɛt jin dɛn na wi bɔdi we de kɔntrol aw di sɛl dɛn de gro, sheb, ɛn day. `PIK3CA` na wan pan dɛn kayn impɔtant jin ya. tink bɔt dis jin as `switch` we de kכntro di growth fכ wi sεl dεm.
כltu, pan pכsin we gεt PROS, difεkt, כ m כtεshכn de insay di `PIK3CA` jin. Dis kin mek di `switch` stɔp na di `on` pozishɔn. Dɔn di prɔtin we wi de tɔk bɔt kin bigin fɔ wok tumɔs fast ɛn tumɔs. Dis kin mek sɔm pat dɛn na di bɔdi, fɔ ɛgzampul, di skin, di blɔd vesel dɛn , di bon dɛn , ɛn di bren, kin bigin fɔ gro we wi nɔ ebul fɔ kɔntrol.
Di impɔtant tin na dat PROS nɔ de afɛkt ɔl pat na di bɔdi. I kin difrɛn frɔm wan pat na di bɔdi to ɔda pat, ɛn frɔm wan pɔsin to ɔda pɔsin. So, de sayn dɛm bak kin rili difrɛn.
Te naw, no kɔmplit mɛrɛsin nɔ bin de fɔ PROS. Di tritmɛnt dɛn bin de pe atɛnshɔn fɔ manej di sik dɛn. Fɔ ɛgzampul, mɛrɛsin fɔ pen, it, ɛn sik, ɛn ɔpreshɔn fɔ pul di tin dɛn we nɔ de gro. Bɔt, risk bin de fɔ mek dɛn growth dɛn de gro bak afta dɛn dɔn du di ɔpreshɔn.
Aw di drɔg we dɛn kɔl Vijoice (alpelisib) de wok?
Dis na di say we di drɔg Vijoice de kam insay Vijoice na di fɔs drɔg we de tɔch di ɔndalayn kɔz fɔ PROS, di aypa aktiviti we di jenɛtik muteshɔn de mek.
Di aktif ingridiɛnt fɔ dis na alpelisib . Dɛn kin rili yuz dis mɛrɛsin fɔ sɔm kayn bɔdi kansa . Di rizin fɔ dat na, nadi kεnsar sεl dεm de gro bikoz fכ di כva aktiviti fכ di PIK3 path, jכs lεk insay PROS.
so wetin Vijoice de du na fכ blok di PIK3 path, we de akt lεk ‘switch’ we stכk na di ‘on’ posishכn. Dis kin mek di sɛl dɛn nɔ gro fayn, i kin mek di tisu dɛn we dɔn ɔlrɛdi gro smɔl, ɛn i kin kɔntrol di sayn dɛn we de sho se di sik de.
Wetin na di bɛnifit dɛn we dis mɛrɛsin de gi?
Stɔdi dɛm we dɛn du pan dis drɔg (EPIK-P1 ɛn EPIK-P3) dɔn sho se i gɛt bɔku bɛnifit fɔ di sik pipul dɛm.
| Bɛnifit | Simpul ɛksplen |
|---|---|
| Smɔl smɔl tin dɛn we de gro (lɛsin) . | Dɛn dɔn si se bɔku pipul dɛn we dɔn tek di drɔg dɔn gɛt dɛn abnɔmal divɛlɔp fat tɔmɔs (lipomas) ɛn vaskyuɛl malfɔmeshɔn dɛn we dɔn ridyus in volyum bay 20% ɔ mɔ. |
| I nɔ nid fɔ gɛt ɔpreshɔn igen | Na lɛk 70% pan di pikin dɛn ɛn 90% pan di big pipul dɛn we de tek Vijoice nɔ nid ɔpreshɔn. |
| Di simptom dɛn we de mek pɔsin nɔ fil fayn | Di sik pipul dɛn dɔn ripɔt se di sik dɛn lɛk pen, it, ɛn taya dɔn ridyus bad bad wan. |
| Mek ɛvride wok izi | Na lɛk 81% pan di pasɛnt dɛn we tek pat pan di stɔdi dɛn ripɔt se dɛn ebul fɔ du ɛvride aktiviti ɛn kwaliti fɔ layf dɔn impɔtant we dɛn kɔmpia am bifo dɛn tek di mɛrɛsin. |
Impɔtant: Dɛn tin ya we kin apin nɔ kin bi di sem fɔ ɔlman. Tɔk to yu dɔktɔ bɔt if dis mɛrɛsin fayn fɔ yu ɛn wetin de bɛnifit ɛn denja.I bɛtɛ fɔ mek yu tɔk to dɛn ɛn disayd.
Wetin na di sayd ɛfɛkt dɛm we kin apin ɛn aw fɔ mɛn dɛn?
Lɛk ɛni mɛrɛsin, Vijoice kin mek pɔsin gɛt sayd ɛfɛkt . Bɔt bɔrku pan dɛn tin ya nɔr kin pasmak ɔr nɔr kin pasmak ɛn dɛn kin ebul fɔ kɔntrol dɛn.
| Sayd ɛfɛkt we pɔsin kin gɛt | Aw fɔ manej ɛn wetin fɔ pe atɛnshɔn to |
|---|---|
| Rɔnbɛlɛ | Drink bɔku wata lɛk wata ɛn jus. If yu gɛt sɔm sayn dɛn lɛk bad bad dayarɛa, bɛlɛ kramp, ɔ blɔd ɔ mכkus na yu stɔl, tɛl yu dɔktɔ wantɛm wantɛm . |
| Di wata we nɔ de na di bɔdi | Dayarɛa kin mek yu nɔ gɛt wata na yu bɔdi. Wach fɔ sɔm sayn dɛm lɛk fɔ gɛt diziz pasmak, taya, ɛn fɔ mek yu nɔ pis bɛtɛ. Dɛn tin ya kin afɛkt yu kidni, so tɛl yu dɔktɔ wantɛm wantɛm. |
| Sɔm na yu mɔt (Stomatitis) . | Sɔl na yu mɔt ɛn pen kin apin. Nɔ was yu mɔt we gɛt rɔm. Rinse yu mɔt wit sɔl wata we nɔ gɛt bɛtɛ wata. Stay away frɔm it dɛn we gɛt spays ɛn asid. |
| Di blɔd shuga we de go ɔp (Hyperglycemia) . | Yu dɔktɔ go chɛk yu blɔd shuga lɛvɛl bifo yu bigin fɔ tek dis mɛrɛsin ɛn di tɛm we yu de trit yu. Tɛl yu dɔktɔ if yu gɛt sɔm sayn dɛn lɛk fɔ tɔsti pasmak, fɔ pis ɔltɛm, ɔ fɔ taya. Pipul wae gɛt dayabitis fɔ tek tɛm mɔ bɔt dis. |
| Fɔ mek yu ia tan (Alopecia) . | Di ia kin lɔs ɔ tin kin apin we dɛn de trit am. Yuz shampoo dɛn we nɔ gɛt wan bɔt. Tɔk to yu dɔktɔ bɔt dis. |
Prɔblɛm kin de wit ɔda mɛrɛsin dɛn?
Yɛs. Vijoice kin intarakt wit sɔm ɔda mɛrɛsin dɛn. Fɔ tɔk am simpul wan, sɔm mɛrɛsin dɛn kin mek Vijoice nɔ wok fayn. Vijoice kin chenj bak aw sɔm ɔda mɛrɛsin dɛn kin wok.
Fɔ ɛgzampul, mɛrɛsin dɛn lɛk carbamazepine fɔ ɛpilepsi, rifampin fɔ TB, ɛn ɛbul prodak lɛk Sɛnt Jɔn wɔt kin afɛkt dis.
So, bifo yu bigin dis mɛrɛsin, i impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek naw (inklud vaytamɛn, ɛbul prɔdak, ɛn pen kil) so dat i go ebul fɔ mek ɛni ajɔstmɛnt we yu nid.
Mɛsej we dɛn kin kɛr go na os
- PROS na wan rare kכndishכn we pat dεm na di bכdi de gro abnכmal bikoz fכ wan mכtεshכn na di jin we dεn kכl `PIK3CA`.
- Vijoice (alpelisib) na di fɔs drɔg we dɛn dɔn gri fɔ tɔch di ɔndalayn prɔses we de mek dis sik.
- Dis kin ɛp fɔ mek di pikin dɛn we nɔ de gro nɔ bɔku, i nɔ kin nid fɔ du ɔpreshɔn, ɛn i kin mek pɔsin in layf bɛtɛ.
- Sɔm sayd ɛfɛkt lɛk dayarɛa, blɔd shuga we de go ɔp, ɛn mɔt sos kin apin, ɛn i rili impɔtant fɔ manej dɛn ɛn tɛl di dɔktɔ.
- I impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di ɔda mɛrɛsin dɛn we yu de tek. Nɔ ɛva bigin ɔ stɔp fɔ tek ɛni mɛrɛsin we yu nɔ gɛt dɔktɔ advays.
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