He aha te Mastocytosis Pūnaha (SM)? Me ako tātou mō te rongoā Ayvakit.

Kua kōrerotia mai e tō tākuta he mate onge tōu e kiia nei ko te Systemic Mastocytosis ? Tērā pea ka mataku koe, ka āwangawanga hoki ina rongo koe i tēnā. He mea noa iho. Kaua e manukanuka. He tino pai, he whai hua hoki ngā maimoatanga mō ēnei mate. I tēnei rā ka kōrero tātou mō te rongoā Ayvakit (avapritinib) i tohua ki a koe. Kia mārama tātou ki ngā mea katoa mō tēnei mate me te rongoā, kia māmā noa iho, kia mārama hoki.

He aha rawa te Mastocytosis Pūnaha (SM)?

Ki te whakarapopoto, he āhuatanga onge te Systemic Mastocytosis e tipu nui ai tētahi momo pūtau e kiia nei ko ngā 'mast cells' i roto i tō tātou tinana. Ko ēnei mast cells he wāhanga o tō tātou pūnaha ārai mate. Pērā i ngā ope taua o tō tātou whenua. Ina uru mai tētahi mea ke ki roto i te tinana, ka whakahohehia ēnei pūtau ka tukuna ngā matū pērā i te 'histamine'.

Whakaarohia, ina ngaua koe e te waeroa, ka mākūkū, ka whero te wāhi, tika? Koinei te mea ka tupu nā tēnei histamine. Engari i roto i te tangata he Systemic Mastocytosis, ka kohikohi ēnei pūtau mast i roto i te tinana i roto i te āhua kore e taea te whakahaere. Ka kohikohi rātou ki te kiri, ki te hinu wheua, ki ngā whekau o roto rānei pērā i te ate me te whēkau. Nā tēnei, ka pāngia te tinana e ngā tohu mate pāwera, pērā i te mākūkū, te whero o te kiri, te mamae o te puku, me te whanoke, kāore he take e kitea ana.

Ko te tikanga o te kupu "pūnaha" ka pā ki te tinana katoa, kaua ki te wāhi kotahi anake. He maha ngā momo o tēnei mate, mai i ngā momo ngawari, puhoi te tipu (pōturi) ki ngā momo mate pukupuku kua horapa.

Me pēhea taku mōhio mēnā he pai te Ayvakit mōku?

Ka whakahaerehia e tō tākuta he raupapa whakamātautau hei whakatau i te momo Mastocytosis Pūnaha kei a koe. Mā ngā hua o aua whakamātautau me ō tohumate ka whakatau mēnā he tika te Ayvakit māu. Kua whakaaetia a Ayvakit hei rongoā i ētahi momo Mastocytosis Pūnaha i roto i ngā pakeke.

He pēhea te mahi a tēnei rongoā Ayvakit ki te tinana?

He rongoā a Ayvakit nō tētahi rōpū rongoā e kiia nei ko ngā 'kinase inhibitors'. Ko ngā kinase he momo pūmua whākōkī e āwhina ana ki te tuku tohu i waenga i ngā pūtau o te tinana. He mea tino nui ēnei tohu mō ngā mea pēnei i te tipu me te wehenga o ngā pūtau.

He maha ngā tāngata e pāngia ana e te Systemic Mastocytosis, he whakarerekētanga ira kei roto i te pūmua e kīia nei ko te KIT e kitea ana i roto i ngā pūtau mast . Nā tēnei whakarerekētanga ira ka nui rawa te kaha o te pūmua KIT, ka tupu korekore noa iho ngā pūtau mast.

Ka aro tonu te rongoā Ayvakit ki te pūmua KIT kua whakarerekētia, ā, ka mutu tana mahi.He rite ki te whakamōkito i tētahi pourewa e tuku ana i te tohu hē. Ka mutu te whakaputanga nui o ngā pūtau mast, ka whakaiti i ngā tohu, ā, ka whakahaere i te kino o ngā whekau.

Me pēhea te whakamahi i ngā pire Ayvakit?

He pire te Ayvakit. Ko te mea nui rawa atu i te wā e tangohia ana, me tango i te wā e takoto kau ana te puku . Arā, me tango e koe i te iti rawa i te haora i mua i te kai, i te rua haora rānei i muri i te kai. Ko te wā tēnā e pai ai te mimiti o te rongoā e te tinana.

Ko ngā horopeta e tohua ana koia ēnei:

• Mō te Mastitis Pūnaha Matatau TOS (AdvSM): 200mg kotahi i te rā.
• Mō te Mastocytosis Pūnaha Poto (ISM): 25mg kotahi i te rā.

He maimoatanga roa tēnei i te nuinga o te wā. Ka kī atu tō tākuta kia mau tonu te tango i te rongoā kia puta rā anō ngā hua pai, ā, kia kore rā anō he pānga kino kino e pā mai. Mena ka pā mai ētahi pānga kino, ka whakatau pea tō tākuta ki te whakaiti i tō horopeta, ki te whakamutu wā poto, ki te whakamutu katoa rānei.

He aha tā ngā rangahau e kī ana mō te angitu o Ayvakit?

E toru ngā kōrero e pā ana ki ngā whakamātautau haumanu i whakahaerehia hei tirotiro i te whai huatanga me te haumaru o te rongoā Ayvakit.

Mō te AdvSM (kino): I roto i ngā rangahau e rua, arā, ko EXPLORER me PATHFINDER, 57% o te hunga i tango i te Ayvakit, neke atu i te haurua rānei, i kitea he iti iho ngā tohu me te whakaora i te mahi a ngā whekau e pāngia ana. Ko te haurua o te hunga i whakaatu i ngā hua i pupuri i taua whakapainga mō te 38 marama, neke atu rānei i te 3 tau.

Mō te ISM (momo ngawari): I roto i te rangahau PIONEER, ko te hunga i tango i te Ayvakit he iti ake ngā tohu (pēnei i te mākati, te mamae o te puku, me te ngenge) i te hunga i tango i te placebo. Ko te tikanga tēnei kua tino awhina tēnei rongoā i te whakapai ake i te kounga o te oranga.

E whakaatu ana ēnei rangahau he tino whai hua te Ayvakit hei rongoā mō te Systemic Mastocytosis. Heoi, kia maumahara kāore e tino rongoatia te mate, ā, kāore hoki ngā hua e rite mō te katoa.

Tērā pea he raruraru kei waenganui i ētahi atu rongoā? (Ngā Taunekeneke o ngā Rongoā)

Ae, ka taea e Ayvakit te taunekeneke me ētahi rongoā. Ina koa ko ērā e pā ana ki te whākōkī CYP3A i roto i tō tātou ate. Ka taea e ētahi rongoā te whakanui ake i te taumata o Ayvakit i roto i te tinana me te whakanui ake i ngā pānga taha, ko ētahi atu rongoā ka taea te whakaiti i te taumata o Ayvakit me te whakaiti i tōna whai huatanga.

Nō reira, kia mōhio koe ki te whakamōhio atu ki tō tākuta mō ngā rongoā katoa e tangohia ana e koe (ngā rongoā mō ētahi atu mate, ngā huaora, ngā rongoā tuku iho, ngā tāpiringa). Kātahi ka taea e ia te tirotiro mō ngā raruraru, ā, ki te tika, ka taea te whakarerekē i ō rongoā kē atu, te whakarerekē rānei i te horopeta o Ayvakit.

Waihoki, ki te mea kei te tango koe i ngā rongoā whakaiti toto, pērā i te warfarin (Coumadin, Jantoven) , tera pea ka piki ake te tūponotanga o te toto ki roto i te roro mai i Ayvakit. Nō reira, ka tirotirohia koe e tō tākuta mēnā kei te tango koe i aua rongoā.

Me pēhea te tiki rongoā Ayvakit?

He rongoā a Ayvakit e tukuna ana e te rata, he rongoā nā te tohunga toto, nā te tohunga pukupuku rānei.

Ehara tēnei i te rongoā ka taea te hoko mai i tētahi whare rongoā noa . Kei tētahi 'whare rongoā motuhake' te hoko. Kia tukuna atu te whakahaunga e tō tākuta ki taua whare rongoā motuhake, ka taea e rātou te tuku atu i te rongoā ki tō kāinga, ki te tari rānei o tō tākuta.