Ua haʻi aku anei kāu kauka iā ʻoe he maʻi laha ʻole kou i kapa ʻia ʻo Systemic Mastocytosis ? Hiki paha iā ʻoe ke makaʻu iki a hopohopo ke lohe ʻoe i kēlā. He mea maʻamau loa ia. Akā, mai hopohopo. I kēia manawa, aia nā lāʻau lapaʻau maikaʻi loa a kūpono hoʻi no ia mau ʻano. I kēia lā, e kamaʻilio mākou e pili ana i ka lāʻau lapaʻau ʻo Ayvakit (avapritinib) i kuhikuhi ʻia iā ʻoe. E hoʻomaopopo kākou i nā mea āpau e pili ana i kēia maʻi a me ka lāʻau lapaʻau me ka maʻalahi a me ka maopopo.
He aha maoli ka Systemic Mastocytosis (SM)?
I ka ʻōlelo maʻalahi, ʻo Systemic Mastocytosis kahi maʻi laha ʻole kahi e ulu nui ai kahi ʻano cell i kapa ʻia ʻo 'mast cells' i loko o ko mākou kino. ʻO kēia mau mast cell kekahi ʻāpana o kā mākou ʻōnaehana pale. E like me nā pūʻali koa pale o ko mākou ʻāina. Ke komo kahi mea ʻē i ke kino, hoʻāla ʻia kēia mau cell a hoʻokuʻu i nā kemika e like me 'histamine'.
E noʻonoʻo i ka wā e nahu ai kahi makika iā ʻoe, lilo ka ʻāpana i maneʻo a ʻulaʻula, ʻeā? ʻO ia ka mea e hana ʻia ma muli o kēia histamine. Akā i loko o ke kanaka me ka Systemic Mastocytosis, hōʻiliʻili kēia mau cell mast ma ke ʻano i kāohi ʻole ʻia i loko o ke kino. Hōʻiliʻili lākou i loko o ka ʻili, ka iwi iwi, a i ʻole nā ʻōpū o loko e like me ke akepaʻa a me ka spleen. Ma muli o kēia, hiki i ke kino ke ʻike i nā hōʻailona maʻi āpau, e like me ka maneʻo, ka ʻulaʻula o ka ʻili, ka ʻeha o ka ʻōpū, a me ka poniuniu, me ke kumu ʻole.
ʻO ke ʻano o ka huaʻōlelo "systemic" hiki ke hoʻopilikia i ke kino holoʻokoʻa, ʻaʻole hoʻokahi wale nō wahi. Nui nā ʻano like ʻole o kēia maʻi, mai nā ʻano palupalu, lohi ka ulu ʻana (palaualelo) a hiki i nā ʻano holomua, kanesa.
Pehea e ʻike ai inā kūpono ʻo Ayvakit iaʻu?
E hana kāu kauka i kekahi mau hoʻokolohua e hoʻoholo pono ai i ke ʻano o ka Systemic Mastocytosis āu. ʻO nā hopena o kēlā mau hoʻokolohua a me kāu mau hōʻailona e hoʻoholo ai inā kūpono ʻo Ayvakit iā ʻoe. Ua ʻae ʻia ʻo Ayvakit i kēia manawa e mālama i kekahi mau ʻano o ka Systemic Mastocytosis i nā pākeke.
| ʻAno maʻi | He wehewehe maʻalahi |
|---|---|
| ʻO ka Mastocytosis Pūnaehana Kiʻekiʻe (AdvSM) - ʻano koʻikoʻi, pālahalaha wikiwiki | |
| ʻO ka Mastocytosis ʻōnaehana hoʻouka kaua | ʻO ka hōʻiliʻili nui ʻana o nā pūnaewele mast e alakaʻi i ka hana pono ʻole o nā ʻōpū e like me ke akepaʻa, ka ʻōnaehana hoʻoheheʻe, a me nā iwi. |
| SM me kahi maʻi koko e pili ana (neoplasm hematological) | I ka hoʻonui ʻia ʻana o nā pūnaewele mast, hiki ke ulu aʻe nā maʻi ʻē aʻe e pili ana i ke koko (e like me nā myelodysplastic syndromes). |
| Leukemia pūnaewele mast | He maʻi ʻaʻai laha ʻole kēia a ulu wikiwiki hoʻi kahi e hōʻiliʻili ai nā pūnaewele mast i nā helu nui (ʻoi aku ma mua o 20%) i loko o nā ʻiʻo. |
| ʻO ka Indolent Systemic Mastocytosis (ISM) - he ʻano ulu mālie a lohi hoʻi | |
| ʻO ka Mastocytosis ʻōnaehana lohi (ISM) | ʻAʻole kēia he maʻi kanesa. Ulu mālie nā pūnaewele mast. ʻOiai hiki iā lākou ke hana i nā hōʻailona ʻoluʻolu ʻole, ʻaʻole maʻamau ka hāʻule ʻana o nā ʻōkana. |
He mea nui: Hiki ke lilo i mea weliweli ke hoʻohana ʻana iā Ayvakit inā haʻahaʻa loa kou helu platelet koko. ʻO nā platelets kahi ʻano cell e kōkua i ka hoʻōki ʻana i ke kahe koko. E nānā mau kāu kauka i kāu helu platelet ma mua o kou hoʻomaka ʻana e lawe i kēia lāʻau lapaʻau a ʻoiai ʻoe e lawe ana. ʻO kēia ke hōʻemi i ka pilikia o nā hopena ʻino, e like me ke kahe koko ʻana i loko o ka lolo.
Pehea e hana ai kēia lāʻau Ayvakit ma ke kino?
He lāʻau lapaʻau ʻo Ayvakit no kahi hui o nā lāʻau i kapa ʻia ʻo 'kinase inhibitors'. ʻO Kinases kahi ʻano protein enzyme e kōkua i ka hoʻouna ʻana i nā hōʻailona ma waena o nā cell i loko o ko mākou kino. He mea nui loa kēia mau hōʻailona no nā mea e like me ka ulu ʻana a me ka mahele ʻana o nā cell.
He nui ka poʻe me ka Systemic Mastocytosis i loaʻa kahi mutation i loko o kahi protein i kapa ʻia ʻo KIT i loaʻa i loko o nā mast cell . ʻO kēia mutation ke kumu o ka protein KIT e lilo i mea hana nui, e hoʻoulu ai i nā mast cell e ulu me ke kāohi ʻole.
Hoʻopaʻa pololei ka lāʻau ʻAyvakit i kēlā protein KIT i hoʻololi ʻia a hoʻōki iā ia mai ka hana ʻana.E like me ka hoʻopau ʻana i kahi hale kiaʻi e hāʻawi ana i ka hōʻailona hewa. Hoʻopau kēia i ka hana nui ʻana o nā cell mast, hōʻemi i nā hōʻailona, a kāohi i ka hōʻino ʻana i nā ʻōpū.
Pehea e hoʻohana ai i nā lāʻau Ayvakit?
He pila ʻo Ayvakit. ʻO ka mea nui loa i ka wā e lawe ai, ʻo ia ka lawe ʻana i ka ʻōpū ʻole . ʻO ia hoʻi, pono ʻoe e lawe iā ia ma ka liʻiliʻi he hola ma mua o ka ʻai ʻana, a i ʻole ʻelua hola ma hope o ka ʻai ʻana. ʻO ia ka manawa e komo maikaʻi ai ka lāʻau lapaʻau e ke kino.
ʻO nā lāʻau i kuhikuhi pinepine ʻia penei:
- No ka Advanced Systemic Mastitis TOS (AdvSM): 200mg hoʻokahi manawa i ka lā.
- No ka Indolent Systemic Mastocytosis (ISM): 25mg hoʻokahi manawa i ka lā.
He lāʻau lapaʻau lōʻihi kēia maʻamau. E haʻi aku kāu kauka iā ʻoe e hoʻomau i ka lawe ʻana i ka lāʻau a hiki i ka loaʻa ʻana o nā hopena maikaʻi mai ia mea a ʻaʻole ʻoe e loaʻa i nā hopena ʻaoʻao koʻikoʻi. Inā loaʻa iā ʻoe kekahi mau hopena ʻaoʻao, hiki i kāu kauka ke hoʻoholo e hoʻohaʻahaʻa i kāu mahele lāʻau, hoʻōki no ka manawa pōkole, a hoʻōki loa paha.
E hahai pono i nā ʻōlelo a kāu kauka . Mai hoʻōki i ka lawe ʻana i kāu lāʻau lapaʻau a hoʻololi paha i ka nui me ka ʻole o ke kamaʻilio ʻana me kāu kauka. E ʻimi koke i ke kōkua lapaʻau inā loaʻa iā ʻoe kekahi mau hopena ʻaoʻao e like me ke koʻikoʻi.
He aha ka ʻōlelo a ka noiʻi e pili ana i ka holomua o Ayvakit?
Aia ka ʻike e pili ana i ʻekolu mau hoʻokolohua lapaʻau i mālama ʻia e noiʻi i ka pono a me ka palekana o ka lāʻau Ayvakit.
No AdvSM (koʻikoʻi): Ma nā haʻawina ʻelua, ʻo EXPLORER lāua ʻo PATHFINDER, 57% o ka poʻe i lawe iā Ayvakit, a ʻoi aku paha ma mua o ka hapalua, ua emi iho nā hōʻailona a me ka hoʻōla hou ʻana o ka hana ma nā ʻōpū i hoʻopilikia ʻia. ʻO ka hapalua o ka poʻe i hōʻike i nā hopena ua mālama i kēlā hoʻomaikaʻi no 38 mau mahina, a ʻoi aku paha ma mua o 3 mau makahiki.
No ISM (ʻano akahai): Ma ke aʻo ʻana a PIONEER, ʻo ka poʻe i lawe iā Ayvakit ua emi iki nā hōʻailona (e like me ka maneʻo, ka ʻeha o ka ʻōpū, a me ka luhi) ma mua o ka poʻe i lawe i ka placebo. ʻO ke ʻano kēia ua hāʻawi kēia lāʻau i ka hōʻoluʻolu nui i ka hoʻomaikaʻi ʻana i ke ʻano o ke ola.
Ua hōʻike kēia mau haʻawina he koho lapaʻau kūpono loa ʻo Ayvakit no ka Systemic Mastocytosis. Eia nō naʻe, e hoʻomanaʻo ʻaʻole ia e ho'ōla piha i ka maʻi, a ʻaʻole like nā hopena no kēlā me kēia kanaka.
Hiki paha ke loaʻa nā pilikia me nā lāʻau lapaʻau ʻē aʻe? (Nā Hana Pilikino Lāʻau Lapaʻau)
ʻAe, hiki iā Ayvakit ke launa pū me kekahi mau lāʻau lapaʻau. ʻOi loa aku nā mea e hoʻopilikia ai i ka enzyme CYP3A i loko o ko kākou ake. Hiki i kekahi mau lāʻau lapaʻau ke hoʻonui i ka pae o Ayvakit i loko o ke kino a hoʻonui i nā hopena ʻaoʻao, aʻo nā lāʻau lapaʻau ʻē aʻe hiki ke hoʻemi i ka pae o Ayvakit a hoʻemi i kona pono.
No laila, e hōʻoia e hoʻomaopopo i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (nā lāʻau lapaʻau no nā maʻi ʻē aʻe, nā huaora, nā lāʻau lapaʻau kuʻuna, nā mea hoʻohui). A laila hiki iā ia ke nānā i nā pilikia a, inā pono, e hoʻololi i kāu mau lāʻau lapaʻau ʻē aʻe a hoʻololi paha i ka nui o Ayvakit.
Eia kekahi, inā ʻoe e lawe ana i nā lāʻau hoʻokahe koko, e like me warfarin (Coumadin, Jantoven) , hiki ke hoʻonui iki ʻia kou pilikia o ke kahe ʻana o ke koko i loko o ka lolo mai Ayvakit. No laila, e nānā pono kāu kauka iā ʻoe inā ʻoe e lawe ana i ia mau lāʻau lapaʻau.
Pehea e loaʻa ai ka lāʻau lapaʻau Ayvakit?
He lāʻau lapaʻau ʻo Ayvakit i kauoha ʻia e ke kauka, i kuhikuhi pinepine ʻia e ke kauka hematologist a i ʻole oncologist.
ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke loaʻa ma kahi hale kūʻai lāʻau maʻamau . Loaʻa ia ma kahi 'hale kūʻai lāʻau lapaʻau kūikawā'. Ke hoʻouna aku kāu kauka i ke kauoha i kēlā hale kūʻai lāʻau lapaʻau kūikawā, hiki iā lākou ke hoʻouna i ka lāʻau lapaʻau i kou home a i ke keʻena o kāu kauka.
Leka Lawe-Home
- ʻO ka Systemic Mastocytosis (SM) kahi maʻi laha ʻole i hoʻokumu ʻia e ka hōʻiliʻili nui ʻana o nā cell mast i loko o ke kino.
- He lāʻau lapaʻau hou a kūpono loa ʻo Ayvakit e kuhikuhi ana i ke kumu o kēia maʻi a mālama iā ia.
- Pono e lawe ʻia kēia lāʻau lapaʻau ma ka ʻōpū ʻole (hoʻokahi hola ma mua a ʻelua paha hola ma hope o ka ʻai ʻana).
- He mea nui loa e hoʻomaopopo i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe āu e lawe nei, nā huaora, a me nā mea hoʻopihapiha āu e lawe nei.
- ʻAʻole loa ʻoe e hoʻōki i ka lawe ʻana i ka lāʻau lapaʻau a hoʻololi paha i ka dosage me ka ʻole o ke aʻo ʻana a ke kauka.
- E kamaʻilio koke me kāu kauka e pili ana i kekahi ʻeha a i ʻole nā hopena ʻaoʻao. Mai makaʻu, e ʻike i ka ʻike kūpono, a me ka mālama kūpono, hiki iā ʻoe ke ola i kahi ola olakino.
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