Ua loaʻa anei iā ʻoe kahi ʻeha poʻo, ka paʻakikī i ka neʻe ʻana i kou mau maka, a i ʻole ka manaʻo paʻa ʻole i ka hele ʻana? Ua ʻike paha ʻoe i kāu keiki e loaʻa ana kēia mau hōʻailona. ʻOiai ke nānā ʻole nei mākou iā lākou i kekahi manawa, i nā hihia kakaikahi, hiki i kēia mau mea ke lilo i mau hōʻailona o kahi maʻi koʻikoʻi. I kēia lā e kamaʻilio mākou e pili ana i kahi ʻano maʻi ʻaʻai lolo kakaikahi loa he mea nui loa e makaʻala. Ua kapa ʻia kēia ʻo `(Pineoblastoma)`.
He aha kēia `(Pineoblastoma)`? I ka ʻōlelo maʻalahi...
I ka ʻōlelo maʻalahi, ʻo `(Pineoblastoma)` he puʻupuʻu kanesa (kapa mākou he `(malignant)`) e ulu ana i loko o ka `(pineal gland)` i loko o ko mākou lolo.
Ulu koke kēia ʻano kanesa a hiki ke laha i nā ʻiʻo a puni a me ke kahe a puni ka lolo. He kūlana koʻikoʻi loa kēia.
E kali iki, he aha kēia pineal gland?
ʻAe, e aʻo mua kākou e pili ana i kēia `(Pineal Gland)`. He ʻōpū liʻiliʻi loa kēia, he ʻano cone, e like me ke ʻano o ka nati cashew. Aia ia ma waenakonu o ko kākou lolo. Hoʻopuka kēia ʻōpū i
kahi hormone i kapa ʻia ʻo `(Melatonin)` . Ua lohe paha ʻoe i ka `(Melatonin)`. ʻO kēia ka mea e kōkua ai i ka hoʻomalu ʻana i ke ʻano hana o kēlā me kēia lā o ko kākou kino, ʻo ia hoʻi, `(circadian rhythm)`. I ka ʻōlelo maʻalahi, ua like kēia me ka uaki kūlohelohe o ko kākou kino e kōkua iā kākou e ala i ke ao a hiamoe i ka pō.
He aha ke ʻano o ka maʻi kanesa ʻo `(Pineoblastoma)`?
He puʻupuʻu lolo ulu wikiwiki kēia `(Pineoblastoma)`. Hiki i nā kauka ke kapa iā ia he `(grade 4 intracranial brain tumor)`. Eia kekahi, he `(malignant tumor)` kēia, ʻo ia hoʻi he puʻupuʻu kanesa. ʻO ia hoʻi, he mea ʻino ia i ko mākou kino a hiki ke laha.
Pehea ka maʻamau o kēia maʻi i kapa ʻia ʻo "Pineoblastoma"?
He maʻi laha ʻole ka Pineoblastoma. Ma ʻAmelika Hui Pū ʻIa, ʻaʻole i hiki i ka 0.2% o nā puʻupuʻu lolo i ʻike ʻia he mau puʻupuʻu pineal gland.
ʻIke pinepine ʻia kēia ʻano maʻi kanesa i nā keiki ʻōpio a i ʻole ka poʻe ma lalo o 20 makahiki. Eia nō naʻe, he mea nui e hoʻomanaʻo e hiki ke ulu i loko o kekahi o kēlā me kēia makahiki.
He aha nā hōʻailona o kēia maʻi `(Pineoblastoma)`?
ʻAe, i kēia manawa e nānā kākou i ke ʻano o nā hōʻailona a mākou e ʻike ai i ka wā e ulu ai kēia '(Pineoblastoma)'.
- Hiki paha iā ʻoe ke loaʻa i kahi ʻeha poʻo nui . ʻAʻole kēia he ʻeha poʻo maʻamau wale nō, akā he ʻeha koʻikoʻi iki.
- Luhi mau i nā manawa a pau (`( Fatigue )`) . Hiki paha iā ʻoe ke luhi loa a ʻaʻole hiki iā ʻoe ke hana i kekahi mea.
- Paʻakikī ke hoʻoneʻe i kou mau maka . He mea paʻakikī paha ke haka pono i hoʻokahi wahi.
- Nā pilikia me ke kaulike a me ka hoʻonohonoho ʻanaUa like ia me ka hiki ʻole ke mālama i kou kaulike i ka wā e hele ana, a i ʻole ka pilikia i ka paʻa ʻana i nā mea.
- Nā loli i ke ʻano . Nā mea e like me ka huhū nui ʻana, ka pihoihoi nui ʻana, a i ʻole ka mālie ma mua.
- Ka luaʻi a me ka luaʻi .
Hoʻokumu pinepine ʻia kēia mau hōʻailona e kahi maʻi i kapa ʻia ʻo `(hydrocephalus)`. ʻO ia hoʻi, piʻi ke kaomi i loko o ka `(cerebrospinal fluid)` (kapa mākou iā ia ʻo ka cerebrospinal fluid) a puni ka lolo. Hiki i kēia maʻi ʻaʻai ke laha ma o ka `(cerebrospinal fluid)` i nā ʻāpana ʻē aʻe o ka lolo a me ka ʻōnaehana nerve waena (CNS). Eia naʻe, ʻaʻole laha pinepine ka maʻi ʻaʻai `(pineoblastoma)` ma mua o ka `(CNS)`.
E noʻonoʻo he keiki kāu e hoʻopiʻi mau nei i ka ʻeha poʻo, ʻaʻole pāʻani nui e like me ka wā ma mua, a me he mea lā e huhū iki ana. Manaʻo paha nā mākua he mea maʻamau kēia. Akā inā hoʻomau kēia mau hōʻailona, he mea nui loa ia e ʻike i ke kauka.
He aha nā kumu o kēia `(Pineoblastoma)`?
ʻO ke kumu nui o kēia, ʻo ia
ka ulu ʻana o kekahi ʻano cell i kapa ʻia ʻo "pinealocyte cells" i loko o ka pineal gland i loko o ko kākou lolo me ka ʻole o ke kāohi a me ka nui . Hōʻike ka noiʻi e hiki i kēia mau cell ke hoʻomaka e hana maʻamau ʻole ma muli o ka loli o kā mākou mau genes (ʻo "genetic mutation"). ʻElua ʻano o kēia mau mutations genetic: 1.
ʻO nā mea i hoʻoilina ʻia mai nā mākua (ʻo "germline mutation") : Hana ʻia kēia i ka wā hāpai, ʻo ia hoʻi, i ka wā e hui pū ai ka sperm o ka makuahine a me ka makuakāne. 2.
ʻO nā mea i hana ʻia ma hope o ka hāpai ʻana (ʻo "sporadic mutation") : I kēia hihia, ʻaʻohe mea o ka ʻohana i loaʻa i kēia mutation genetic ma mua.
ʻO wai ka mea i ʻoi aku ka pilikia o ka loaʻa ʻana o ka `(Pineoblastoma)`?
Aia kekahi poʻe i kahi pilikia kiʻekiʻe iki o ka loaʻa ʻana o kēia "Pineoblastoma".
- Inā loaʻa iā ʻoe ka retinoblastoma, kahi ʻano maʻi kanesa e ulu ana ma ka retina o ka maka, ua nui kou pilikia o ka hoʻomohala ʻana i ka pineoblastoma.
- Eia kekahi, ʻoi aku ka nui o ka poʻe me kekahi mau mutations i loko o nā genes `(RB1)` a me `(DICER1)` e loaʻa i kēia maʻi kanesa . E like me ka mea i ʻōlelo ʻia ma mua, hiki ke hoʻoilina ʻia kēia mutation genetic mai nā mākua mai, a i ʻole hiki ke hana maʻamau ʻole.
Inā ʻoe e hoʻolālā ana e hoʻomaka i kahi ʻohana, he manaʻo maikaʻi e kamaʻilio me ke kauka e pili ana i ka hoʻāʻo ʻana i ka genetic e ʻike ai inā loaʻa iā ʻoe kekahi o kēia mau mea pilikia.
Pehea e ʻike ʻia ai ka Pineoblastoma?
Hoʻomaopopo ke kauka i kēia maʻi (Pineoblastoma) ma ka nānā ʻana iā ʻoe a me ka hana ʻana i nā hoʻokolohua like ʻole.
- Hoʻokolokolo kino : ʻO ka mea mua, e nīnau ke kauka iā ʻoe e pili ana i kāu mau hōʻailona, inā paha ua loaʻa i kekahi o kou ʻohana nā kūlana like, a e nānā pū i ke ʻano o ka neʻe ʻana o kou mau maka.
- Nā hoʻokolohua kūikawā :
- ʻO kahi scan lolo (Magnetic Resonance Imaging - MRI ).
- ʻO kahi scan `(Computed Tomography - CT)`.
- Malia paha he scan `(Positron Emission Tomography - PET)`.
- He hana ka biopsy kahi e lawe ʻia ai kahi ʻāpana liʻiliʻi o ka ʻiʻo mai ka puʻupuʻu a nānā ʻia. ʻO kēia ka mea e hoʻoholo ai inā he maʻi ʻaʻai ia a me ke ʻano o ia mea.
- Hana ʻia nā hoʻāʻo koko a me/a i ʻole ka wai cerebrospinal (ka wai e hoʻopuni ana i ka lolo) e nānā i nā hōʻailona o kahi puʻupuʻu.
Hiki ke ho'ōla loa ʻia ka `(Pineoblastoma)`?
ʻO kēia ka nīnau a ka poʻe he nui. ʻO ka ʻoiaʻiʻo,
ʻaʻohe lāʻau lapaʻau no `(Pineoblastoma)` i kēia manawa . Akā, mai hopohopo, aia kekahi mau koho lapaʻau. Inā ʻaʻole i pālahalaha ka puʻupuʻu, hiki i ke kauka ke wehe iā ia me ke ʻoki ʻana. Eia naʻe, he ʻano maʻi kanesa paʻakikī ke mālama ʻia `(Pineoblastoma)`. No laila, kiʻekiʻe ka pilikia o nā pilikia mai kēia maʻi kanesa. Hiki ke ʻoi aku ka ʻino o nā hōʻailona i ka hala ʻana o ka manawa a hiki ke hoʻopōkole ʻia ke ola. Eia kekahi, aia
kahi hiki ke hoʻi hou mai ke kanesa ma hope o ka mālama ʻana.
He aha nā lāʻau lapaʻau no ka `(Pineoblastoma)`?
Hiki ke hana ʻia kēia mau mea ma ke ʻano he lāʻau lapaʻau no ka `(Pineoblastoma)`:
- ʻOki kino : Hana ʻia ke ʻoki kino e wehe i kahi hapa a i ʻole ka hapa holoʻokoʻa o ka puʻupuʻu. E wehewehe kāu kauka ʻoki kino iā ʻoe i ka mea hiki i ke ʻoki kino ke hana a me nā pilikia e pili ana.
- ʻO ke ʻoki kino no ka Hydrocephalus : Hiki ke hoʻokomo ʻia kahi shunt (kahi ʻōmole liʻiliʻi) e hōʻemi i ka hōʻiliʻili ʻana o ka wai cerebrospinal a puni ka lolo. Hoʻopau kēia i ka wai keu a hoʻemi i ke kaomi.
- Lapaʻau radiation : He lāʻau maʻamau kēia ma hope o ke ʻoki ʻana. Hiki i ka lāʻau radiation ke hoʻēmi i nā ʻōpū a pepehi paha i nā hunaola kanesa.
- Chemotherapy : He lāʻau lapaʻau i hāʻawi ʻia ma waho aʻe o ka radiation therapy a me ke ʻoki kino. Hiki i ka Chemotherapy ke hoʻēmi i ka puʻupuʻu ma mua o ke ʻoki kino a pepehi i nā hunaola kanesa i koe ma hope o ke ʻoki kino.
- ʻO ka chemotherapy kiʻekiʻe a me ka hoʻoili ʻana o nā cell stem autologous : Ma kēia, hōʻiliʻili ʻia kāu mau cell stem ponoʻī ma mua o ka chemotherapy kiʻekiʻe. A laila, ma hope o ka chemotherapy, hoʻokomo hou ʻia kēlā mau cell stem i loko o kou kino.
I ka loaʻa ʻana o nā lāʻau lapaʻau a me nā lāʻau lapaʻau hou, loaʻa paha iā ʻoe ka manawa kūpono e komo i nā "hoʻokolohua lapaʻau." Hiki i kēia ke komo pū me ka hoʻāʻo ʻana i nā lāʻau lapaʻau hou e like me ka "targeted therapy" a i ʻole ka "immunotherapy."
ʻO wai ka mea e pili ana i kēia mau lāʻau lapaʻau?
Inā loaʻa iā ʻoe ka pineoblastoma, hiki i kāu hui lapaʻau ke komo pū me:
- He loea neurologist (neurologist)
- Kauka lapaʻau maʻi ʻaʻai (oncologist)
- Kauka lapaʻau radiation oncology
- Kauka ʻokiʻoki lolo
Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau?
ʻAe, hiki i kekahi mau lāʻau lapaʻau, ʻoiai ka radiation therapy, ke hana i nā hopena ʻaoʻao. Hiki i kēia mau mea ke hoʻopilikia i kāu hana endocrine. ʻO ke ʻano kēia:
- E ulu (`(Growth)`)
- Nā pae ikehu (`(Nā pae ikehu)`)
- Ka Momona (`(Momona)`)
Ma mua o kou hoʻomaka ʻana i ka lāʻau lapaʻau,
e kamaʻilio me kāu kauka e pili ana i nā hopena ʻaoʻao hiki . E nānā mau lākou iā ʻoe a mālama i nā hopena ʻaoʻao e hiki mai ana.
Hiki iā ʻoe ke ola i ka `(Pineoblastoma)`?
ʻAe, ola kekahi poʻe i ka Pineoblastoma. ʻO ka nui o ke ola ʻana no ʻelima makahiki no Pineoblastoma he
60% a 69.5% . ʻO ke ʻano kēia ma waena o 60% a me 70% o ka poʻe me ka maʻi e ola mau ana ma hope o ʻelima mau makahiki. ʻOiai hiki i ka Pineoblastoma ke hoʻopōkole i kou ola, aia nā lāʻau lapaʻau e hiki ke kōkua iā ʻoe e noho olakino a ola lōʻihi.
He aha ka wānana no ka `(Pineoblastoma)`?
Ma hope o ka ʻike ʻia ʻana o ka maʻi ʻo `(Pineoblastoma)`, e haʻi aku kāu kauka iā ʻoe e pili ana i ka wānana. E like me ka mea i ʻōlelo ʻia ma mua, ʻaʻohe lāʻau lapaʻau no `(Pineoblastoma)`, akā aia nā lāʻau lapaʻau. Aia ka manaʻolana o ke ola o ke kanaka ma nā kumu he nui, e like me
kou olakino holoʻokoʻa, pehea ʻoe e pane ai i ka lāʻau lapaʻau, a me ka wikiwiki o ka ulu ʻana o ka puʻupuʻu . Ma hope o ka ʻike ʻia ʻana o `(Pineoblastoma)`, pono ʻoe e ʻike pinepine i ke kauka. ʻO kēia no ka mea e nānā lākou iā ʻoe no nā hopena ʻaoʻao a hana i nā mea e pono ai.
Hiki ke pale ʻia ka Pineoblastoma?
ʻO ka mea pōʻino,
ʻaʻohe ala i ʻike ʻia e pale aku ai iā Pineoblastoma i kēia manawa .
Āhea wau e ʻike ai i ke kauka?
Nā hōʻailona o ka `(Pineoblastoma)` nou a i ʻole kāu keiki, ʻo ia hoʻi:
- ʻEha poʻo
- Nā loli i ke ʻano
- Ka paʻakikī i ka hoʻoneʻe ʻana i nā maka
Inā loaʻa iā ʻoe kekahi o kēia mau mea,
e ʻike koke i ke kauka . Inā ua ʻike ʻia ʻoe me ka `(Pineoblastoma)` a ke mālama ʻia nei ʻoe, e haʻi i kāu kauka inā loaʻa iā ʻoe kekahi mau hopena ʻaoʻao. Inā ʻōpiopio kāu keiki, hiki i ka lāʻau ke hoʻopilikia i kona ulu ʻana. Inā manaʻo ʻoe ua lōʻihi ka manawa e ulu ai kāu keiki ma kahi kūpono no kona mau makahiki, e kamaʻilio pū me kāu kauka e pili ana i kēlā.
He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?
Ke ʻike ʻoe i ke kauka, he mea maikaʻi ke nīnau i nā nīnau e like me kēia:
- He aha ke ʻano o ka lāʻau lapaʻau āu e paipai nei?
- Ua laha anei ke kanesa?
- Pono anei au i ke ʻoki kino?
- He aha nā hopena ʻaoʻao o ka lāʻau lapaʻau?
- He aha koʻu manaʻolana ola a i ʻole ka wānana?
He mea maʻamau ka manaʻo haʻalulu, kaumaha, a makaʻu hoʻi ke lohe ʻoe i nā huaʻōlelo "he maʻi kanesa kou." I ka manawa koke, he nui kāu mau nīnau e pili ana i ka mea e hana ai, ka mea e manaʻo ai, a me ka mea e manaʻo ai.
Mai hopohopo . E kōkua kāu kauka a me ka hui lapaʻau iā ʻoe e hana me kēia hōʻailona a koho i ka lāʻau lapaʻau kūpono loa iā ʻoe. I loko o kēia manawa, e hōʻoia e hoʻopuni iā ʻoe iho me ka ʻohana kākoʻo a me nā hoaaloha. Ke hoʻomau nei ka noiʻi ʻana i nā lāʻau lapaʻau hou no ka pineoblastoma, no laila e noho lana ka manaʻo.
Leka Lawe-Home
- He maʻi ʻaʻai laha ʻole ka Pineoblastoma akā ulu wikiwiki ia e ulu ana i loko o ka pineal gland o ka lolo.
- Hiki ke loaʻa nā hōʻailona e like me ke poʻo ʻeha, nā pilikia maka, ka nalowale o ke kaulike, a me nā loli o ke ʻano. Hiki ke loaʻa kēia ma muli o ka hydrocephalus (ka hōʻiliʻili ʻana o ka wai ma ka lolo) .
- ʻO ke kumu pinepine he genetic. ʻOi aku ka nui o ka pilikia o ka poʻe me ka `(Retinoblastoma)` a me ka poʻe me nā mutations gene `(RB1)` a me `(DICER1)`.
- Hana ʻia nā hoʻokolohua e like me MRI, CT scan, a me biopsy no ka hōʻoia ʻana.
- ʻOiai ʻaʻohe lāʻau lapaʻau piha, aia nā lāʻau lapaʻau e like me ke ʻoki ʻana, ka radiation therapy, a me ka chemotherapy.
- Inā loaʻa iā ʻoe nā hōʻailona , e ʻimi koke i ke kōkua lapaʻau . Mai makaʻu e nīnau.
- ʻOiai he kūlana paʻakikī kēia, e kū i ka lāʻau lapaʻau me ka manaʻolana a me ka ikaika . ʻAʻole ʻoe hoʻokahi.
Manaʻolana wau he mea kōkua kēia ʻike iā ʻoe. Inā kānalua ʻoe no kekahi mau hōʻailona, e ʻoluʻolu e ʻike i ke kauka.
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