Miiri k’a filɛ, i farikolo yɔrɔ kelen dɔrɔn de bɛ bonya joona ka tɛmɛ tɔw kan, misali la bolo, sen, walima fari yɔrɔ dɔ. Nin ye bana ye min man ca kosɛbɛ, mɔgɔ dɔw bɛ bange ni min ye. Furakɛcogo siratigɛ la, an bɛ nin bana kulu in wele ko PIK3CA-Related Overgrowth Spectrum, walima PROS ni a surunyalen don. Nin ye fɛn ye min bɛ gɛlɛya caman lase tiɲɛ na a yebaga ma, ka fara a sɔrɔbaga kan. Bi, nin barokun in kɔnɔ, an bɛna kuma nin PROS in ye min ye ani Vijoice kan, fura fɔlɔ min dabɔra kɛrɛnkɛrɛnnenya la nin bana in kama.
Know your body mass index (BMI) and weight classification
PROS ye mun ye tigitigi?
N’an y’a fɔ cogo nɔgɔman na, PROS ye bana ye min bɛ sɔrɔ jamu fɛ. Jɛnkuluw bɛ an bɛɛ la an farikolo la minnu bɛ farikolokisɛw falen, u tilali ani u ka saya ɲɛminɛ. PIK3CA ye o jɛnɛya nafama dɔ ye. Miiri nin jamu in na i n’a fɔ switch min bɛ an ka selilɛriw ka bonya kɔlɔsi.
Nka, PROS bɛ mɔgɔ min na, fiɲɛ dɔ bɛ PIK3CA jamu na, walima fɛn dɔ b’a la . O bɛ kɛ sababu ye ka switch siri on cogo la. O kɔfɛ, farikolojɔlifɛn min kofɔlen don, o bɛ baara daminɛ joona kojugu ani ka caya kojugu. O de kosɔn, farikolo yɔrɔ dɔw, misali la, fari, joli siraw , kolotugudaw , ani kunsɛmɛ, olu bɛ daminɛ ka bonya cogo la min tɛ se ka kunbɛn.
Min nafa ka bon, o ye ko PROS tɛ farikolo yɔrɔ bɛɛ minɛ. A bɛ se ka ɲɔgɔn ta farikolo yɔrɔ dɔ la ka taa yɔrɔ wɛrɛ la, ani mɔgɔ ni mɔgɔ cɛ. O la, a taamasiɲɛw fana ka ca kosɛbɛ.
Fɔ ka na se bi ma, fura dafalen tun tɛ PROS la. Furakɛliw tun sinsinnen bɛ bana taamasiɲɛw ɲɛnabɔli kan. Misali la, dimi, nɛ, ani kirinni furaw, ani opereli minnu bɛ kɛ ka falenfɛnw bɔ minnu tɛ cogo la. Nka, farati tun bɛ o bonya la ka bonya tuguni opereli kɔfɛ.
Fura Vijoice (alpelisib) bɛ baara kɛ cogo di?
O yɔrɔ de la fura Vijoice bɛ don, Vijoice ye fura fɔlɔ ye min bɛ PROS sababu jɔnjɔn laɲini , o ye baara caya kojugu ye min bɛ sɔrɔ jamu jiginni fɛ.
o fɛn min bɛ kɛ , o ye alpelisibi ye . fura in bɛ kɛ tiɲɛ na sinji kansɛri suguya dɔw la . O kun ye, aKansɛribanakisɛw bɛ bonya ka a sababu kɛ PIK3 sira ka baara caya kojugu ye, i n’a fɔ PROS kɔnɔ cogo min na.
O la Vijoice bɛ min Kɛ o ye PIK3 sira datugu, o min bɛ Kɛ i n’a fɔ ‘switch’ min sirilen bɛ ‘on’ jɔyɔrɔ la. O bɛ farikolokisɛw falencogo jugumanba sumaya, ka farikolo yɔrɔw bonya dɔgɔya minnu bɛ ka bonya kaban, ani ka bana taamasiɲɛw kunbɛn.
Fura in nafa ye mun ye?
Kɔlɔsili minnu kɛra fura in kan (EPIK-P1 ani EPIK-P3) olu y’a jira ko nafa caman bɛ banabagatɔw la.
| Tɔnɔ | Ɲɛfɔli nɔgɔman |
|---|---|
| Bonya misɛnniw (joginda) . | A kɔlɔsira ko mɔgɔ caman minnu ye fura in ta, olu ka tulumafɛnw (lipomas) minnu bɛ sɔrɔ cogo la min tɛ bɛn, ani joli siraw tiɲɛni, olu hakɛ dɔgɔyara ni 20% ye walima ka tɛmɛ o kan. |
| Opereli mago bɛ dɔgɔya | Denmisɛn minnu bɛ Vijoice ta, olu 70% ɲɔgɔn ani baliku 90% mako ma kɛ opereli la. |
| Taamasiɲɛw lajɔli | Banabagatɔw y’a jira ko dɔ bɔra kosɛbɛ bana taamasiɲɛw la i n’a fɔ dimi, nɛ, ani sɛgɛn. |
| Ka don o don baara nɔgɔya | Banabagatɔ 81% ɲɔgɔnna minnu tun bɛ nin sɛgɛsɛgɛliw la, olu y’a jira k’u seko ka don o don baara kɛ ani u ka ɲɛnamaya kɛcogo ɲɛnabɔra ni i ye a suma ni fura tali ɲɛfɛ. |
Nafama: A bɛ se ka kɛ ko nin nɔ ninnu tɛ kelen ye bɛɛ la. Aw bɛ kuma aw ka dɔgɔtɔrɔ fɛ walasa ka a dɔn ni fura in bɛnnen don aw ma ani a nafaw ni a farati minnu bɛ a la.A ka fisa ka kuma u fɛ ani ka ko latigɛ.
A kɔlɔlɔ jumɛnw ka teli ka sɔrɔ ani u furakɛcogo?
I n’a fɔ fura tɔw bɛɛ, Vijoice bɛ se ka kɔlɔlɔ lase mɔgɔ ma . Nka, o fanba ka nɔgɔn walima u ka dɔgɔn, wa u bɛ se ka furakɛ.
| Kɔnɔnatumu kɔlɔlɔ | A ɲɛnabɔcogo ani i ka kan ka i janto fɛn minnu na |
|---|---|
| Kɔnɔboli | Aw bɛ jimafɛn caman min i n’a fɔ ji ni ji. Ni aw ye taamasiɲɛ dɔw ye i n’a fɔ kɔnɔboli jugumanba, kɔnɔboli, walima joli walima nɔgɔ aw ka banakɔtaa la, aw bɛ o fɔ dɔgɔtɔrɔ ye joona . |
| Farikolojidɛsɛ | Kɔnɔboli bɛ se ka kɛ sababu ye ka farikolojidɛsɛ bila mɔgɔ la. Aw ye aw janto a taamasiɲɛw la i n’a fɔ ɲɛnamini kojugu, sɛgɛn, ani koli dɔgɔyali. Olu bɛ se ka nɔ bila aw ka sugunɛ na, o la aw bɛ o fɔ dɔgɔtɔrɔ ye o yɔrɔnin bɛɛ. |
| Da kɔnɔbana (Stomatitis) . | Dawolo ni dimi bɛ se ka kɛ. Aw bɛ aw yɛrɛ tanga dawololafɛnw ma, dɔlɔ bɛ minnu na. Aw bɛ aw da ko ni kɔgɔji mɔlen ye. Aw bɛ aw yɔrɔ janya dumuni timimanw na, asidi bɛ minnu na. |
| Sukaro hakɛ cayalenba (Hyperglycémie) . | Aw ka dɔgɔtɔrɔ bɛna aw joli sukaro hakɛ lajɛ sani aw ka fura in tali daminɛ ani aw ka furakɛli waati. Aw bɛ a fɔ dɔgɔtɔrɔ ye ni bana taamasiɲɛw bɛ aw la i n’a fɔ minnɔgɔ kojugu, koli kɛli tuma caman, walima sɛgɛn. Jabɛtibana bɛ mɔgɔ minnu na, olu ka kan k’u janto o la kɛrɛnkɛrɛnnenya la. |
| Kunsigi sɔgɔli (Alopecia) . | Kunsigi bɔli walima a finni bɛ se ka kɛ furakɛli senfɛ. Aw bɛ shampoo nɔgɔmanw kɛ. Aw bɛ kuma aw ka dɔgɔtɔrɔ fɛ o ko la. |
Yala gɛlɛya bɛ se ka sɔrɔ fura wɛrɛw la wa?
Awɔ. Vijoice bɛ se ka ɲɔgɔn sɔrɔ ni fura wɛrɛw ye. N’an y’a fɔ cogo nɔgɔman na, fura dɔw bɛ se ka dɔ bɔ Vijoice nafa la. Vijoice fana bɛ se ka fura wɛrɛ dɔw nafa Changer.
Misali la, fura minnu bɛ kɛ i n’a fɔ karɔbamazepini (carbamazepine) min bɛ kɛ ka sɔgɔsɔgɔninjɛ furakɛ, rifampini (rifampine) min bɛ kɛ ka sɔgɔsɔgɔninjɛ furakɛ, ani furabuluw i n’a fɔ St John’s wort, olu bɛ se ka nɔ bila o la.
O la, sani aw ka fura in daminɛ, a nafa ka bon aw ka fura minnu ta sisan (witaminiw, furabuluw, ani dimimadafura fana sen bɛ o la) ka olu bɛɛ fɔ dɔgɔtɔrɔ ye walasa a ka se ka yɛlɛmali wajibiyalenw bɛɛ kɛ.
Take-Home cikan
- PROS ye bana ye min man teli ka sɔrɔ farikolo yɔrɔ dɔw bɛ bonya cogo la min tɛ bɛn ka da fɛn dɔ jiginni kan jamu kɔnɔ min bɛ wele ko PIK3CA.
- Vijoice (alpelisib) ye fura fɔlɔ ye min dagalen don walasa ka bana in bila mɔgɔ la min bɛ a kɔnɔ, o laɲini.
- O bɛ se ka dɛmɛ don ka bonyabaliya dɔgɔya, ka opereli mago dɔgɔya, ani ka ɲɛnamaya kɛcogo ɲɛ.
- Kɔnɔnatumuw i n’a fɔ kɔnɔboli, sukaro cayalenba, ani da kɔnɔdimi bɛ se ka sɔrɔ, wa a nafa ka bon kosɛbɛ ka u kunbɛn ani ka dɔgɔtɔrɔ ladɔnniya.
- A nafa ka bon ka dɔgɔtɔrɔ ladɔnniya fura tɔw bɛɛ la aw bɛ minnu ta. Aw kana fura si tali daminɛ walima ka a dabila abada ni dɔgɔtɔrɔ ma ladilikan di aw ma.
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