Ua ʻike anei ʻoe i nā ʻeha poʻo mau, ka paʻakikī i ka neʻe ʻana i kou mau maka, a i ʻole ka nalowale koke ʻana o ke kaulike i ka wā e hele ana? Ua ʻike paha ʻoe i kēia mau hōʻailona i kāu keiki. ʻOiai mākou e nānā pinepine ʻole i kēlā mau pilikia, hiki iā lākou ke lilo i mau hōʻailona o kahi maʻi olakino koʻikoʻi. I kēia lā, ma Nirogi Lanka , ke kūkākūkā nei mākou i kahi puʻupuʻu lolo kakaʻikahi loa akā he mea nui e hoʻomaopopo i ʻike ʻia ʻo Pineoblastoma .
He aha maoli ka Pineoblastoma? I ka ʻōlelo maʻalahi…
I nā huaʻōlelo maʻalahi, ʻo Pineoblastoma kahi puʻupuʻu ʻino (cancerous) e hoʻomaka ana ma ka pineal gland o kou lolo. He ʻano ʻino loa kēia ʻano puʻupuʻu; ulu koke ia a hiki ke laha i nā ʻiʻo lolo a puni a me ke kahe e kaʻapuni ana a puni kou lolo, e lilo ia i mea hopohopo nui i ke olakino.
E kali, he aha ka Pineal Gland?
E hoʻomaka kākou me nā kumu. He ʻano liʻiliʻi ke kelepa pineal, e like me ka nui o ka nati paina, aia ma waenakonu o kou lolo. ʻO kēia kelepa ke kuleana no ka hūnā ʻana i kahi hormone i kapa ʻia ʻo melatonin . Ua lohe paha ʻoe i ka melatonin—he mea nui ia no ka hoʻoponopono ʻana i kāu circadian rhythm . E noʻonoʻo iā ia he uaki kūloko maoli o kou kino e kōkua iā ʻoe e makaʻala i ke ao a hoʻoulu i ka hiamoe i ka pō.
He aha ke ʻano o ka puʻupuʻu ʻo Pineoblastoma?
He puʻupuʻu lolo wikiwiki ka Pineoblastoma . Hoʻokaʻawale pinepine nā kauka iā ia he puʻupuʻu lolo intracranial Papa 4. No ka mea he puʻupuʻu ʻino ia, he mea ʻino ia i ke kino a he hiki ke laha.
Pehea ka maʻamau o ka Pineoblastoma?
He mea kākaʻikahi loa ka Pineoblastoma . Wahi a nā hōʻike ma ʻAmelika Hui Pū ʻIa, ʻoi aku ka liʻiliʻi ma mua o 0.2% o nā puʻupuʻu lolo āpau i ʻike ʻia he mau puʻupuʻu kelepa pineal. ʻOiai ʻo kēia ʻano maʻi kanesa ka mea i ʻike pinepine ʻia i nā keiki ʻōpio a i ʻole nā mākua ʻōpio ma lalo o 20 mau makahiki , he mea nui e hoʻomanaʻo e hiki ke hana i kēlā me kēia makahiki.
He aha nā hōʻailona o ka Pineoblastoma?
E nānā kākou i nā hōʻailona e hiki ke hōʻike ʻia me kēia maʻi:
- ʻEha poʻo koʻikoʻi : ʻAʻole kēia kou ʻeha poʻo maʻamau; he ikaika pinepine lākou a mau loa.
- Luhi mau : He manaʻo luhi loa a paʻakikī nā hana o kēlā me kēia lā ( Luhi ).
- Paʻakikī me ka neʻe ʻana o ka maka : E paʻakikī paha iā ʻoe ke kau i kou mau maka a nānā paha i kekahi mau ʻaoʻao.
- Nā pilikia me ke kaulike a me ka hoʻonohonoho ʻana : Manaʻo paʻa ʻole i ka wā e hele ai a i ʻole ka pilikia e paʻa ana i nā mea.
- Nā loli o ke ʻano : Nā loli i ʻike ʻia i ke ʻano, e like me ka hoʻonui ʻia o ka huhū, ka hoʻonāukiuki, a i ʻole ka haʻalele koke ʻana.
- Ka luaʻi a me ka luaʻi .
Hoʻokumu pinepine ʻia kēia mau hōʻailona e kahi maʻi i kapa ʻia ʻo hydrocephalus , kahi e hōʻiliʻili ai ka wai cerebrospinal a hoʻonui i ke kaomi i loko o ka lolo. ʻOiai hiki i ka puʻupuʻu ke pālahalaha ma o kēia wai i nā ʻāpana ʻē aʻe o ka Central Nervous System (CNS), ʻaʻole ia e laha pinepine ma waho o ka CNS.
E noʻonoʻo i kahi keiki e hoʻopiʻi nei i ka ʻeha poʻo pinepine, hoʻōki i ka makemake e pāʻani, a me he mea lā huhū loa. Hiki i nā mākua ke hoʻowahāwahā i kēia ma ke ʻano he ʻano maʻamau. Eia nō naʻe, inā hoʻomau nā hōʻailona, he mea nui e nīnau koke i ke kauka.
He aha ke kumu o ka Pineoblastoma?
ʻO ke kumu nui , ʻo ia ka ulu wikiwiki ʻana o nā pūnaewele kūikawā i loko o ka pineal gland i ʻike ʻia he pinealocytes . Hōʻike ka noiʻi ʻana ua hoʻoulu nā hoʻololi genetic i kēia mau pūnaewele i ka hana hewa a ulu ʻē.
Hiki ke hana ʻia kēia mau loli genetic ma nā ʻano ʻelua:
1. Hoʻoilina (nā hoʻololi germline) : Hoʻoili ʻia mai nā mākua a i ke keiki i ka wā o ka hāpai ʻana.
2. Nā hoʻololi sporadic : Nā loli kaulele e kū mai ana ma hope o ka hāpai ʻana, kahi ʻaʻohe mōʻaukala ʻohana mua o ke ʻano.
ʻO wai ka mea i ʻoi aku ka pilikia no ka Pineoblastoma?
ʻOi aku ka nui o ka pilikia o kekahi poʻe i ka hoʻomohala ʻana i ka Pineoblastoma :
- Inā loaʻa iā ʻoe ʻo Retinoblastoma , kahi maʻi ʻaʻai o ka retina o ka maka, ua piʻi aʻe kou pilikia.
- ʻOi aku ka nui o ka pilikia o ka loaʻa ʻana o kēia maʻi kanesa i nā kānaka me nā mutations i loko o nā genes RB1 a i ʻole DICER1 . Hiki ke hoʻoilina ʻia kēia mau mutations a sporadic paha.
Inā ʻoe e hoʻolālā ana e hoʻomaka i kahi ʻohana a hopohopo e pili ana i kēia mau mea pilikia, he mea kūpono ke kamaʻilio me kahi mea mālama ola e pili ana i ka hoʻāʻo ʻana i ka genetic .
Pehea e ʻike ʻia ai ka Pineoblastoma?
Hoʻoponopono nā kauka i ka Pineoblastoma ma o ka hui pū ʻana o nā loiloi lapaʻau a me nā hoʻokolohua diagnostic:
- Hoʻokolokolo kino : E loiloi kāu kauka i kāu mau hōʻailona, ka mōʻaukala ʻohana, a hana i nā hoʻokolohua neurological, me ka nānā ʻana i ka hoʻonohonoho ʻana o kou maka.
- Nā hōʻailona holomua :
- Nā scan o ke kiʻi magnetic resonance imaging ( MRI ) o ka lolo.
- Nā scan Computed Tomography (CT).
- I kekahi manawa, pono ʻoe e hoʻohana i kahi scan Positron Emission Tomography (PET).
- ʻO kahi biopsy , kahi e lawe ʻia ai kahi hāpana liʻiliʻi no ka nānā ʻana e hōʻoia i ke ʻano o ka puʻupuʻu.
- Nā hoʻāʻo koko a/a i ʻole ka hoʻāʻo ʻana o ka wai cerebrospinal no nā māka tumor kikoʻī.
Hiki ke ho'ōla ʻia ka Pineoblastoma?
He mea maʻamau kēia. ʻO kaʻoiaʻiʻo, ʻaʻohe lāʻau lapaʻau no ka Pineoblastoma i kēia manawa. Eia naʻe, mai hoʻopoina i ka manaʻolana; aia nā koho lapaʻau like ʻole. Inā ʻaʻole i pālahalaha ka puʻupuʻu, ʻo ka wehe ʻana i ke ʻoki kino ka hana mua.
No ka mea, he ʻano maʻi ʻaʻai ikaika ʻo Pineoblastoma , he paʻakikī ke mālama ʻia. Hiki ke loaʻa nā pilikia, a hiki ke hoʻopilikia ʻia ka prognosis lōʻihi. Eia kekahi, aia mau ka hiki ke hoʻi hou mai ke kanesa ma hope o ka mālama ʻana.
He aha nā lāʻau lapaʻau no ka Pineoblastoma?
Hiki i nā lāʻau lapaʻau no Pineoblastoma ke komo pū me kēia mau mea:
- ʻOki kino : Hana pinepine ʻia ke ʻoki kino e wehe i kahi hapa a i ʻole ka hapa holoʻokoʻa o ka puʻupuʻu. E wehewehe kāu kauka ʻoki kino i ke kaʻina hana a me nā pilikia pili i nā kikoʻī.
- ʻO ke ʻoki kino no ka Hydrocephalus : No ka hōʻemi ʻana i ka hōʻiliʻili ʻana o ka wai (wai cerebrospinal) a puni ka lolo, hiki ke kau ʻia kahi shunt—he ʻōmole liʻiliʻi—e hoʻokahe i ka wai keu a hoʻomaha i ke kaomi.
- Lapaʻau Radiation : He lāʻau lapaʻau maʻamau kēia ma hope o ke ʻoki kino. Hiki i ka lāʻau lapaʻau radiation ke kōkua i ka hoʻēmi ʻana i nā ʻiʻo puʻupuʻu i koe a i ʻole ka luku ʻana i nā hunaola kanesa.
- Chemotherapy : Hoʻohana ʻia me ke ʻoki ʻana a me ka radiation, hiki i ka chemotherapy ke kōkua i ka hoʻēmi ʻana i ka puʻupuʻu ma mua o ke ʻoki ʻana a hoʻopau paha i nā hunaola kanesa i koe ma hope.
- ʻO ka Chemotherapy Dose Kiʻekiʻe a me ka Autologous Stem Cell Transplant : Ma kēia kaʻina hana, hōʻiliʻili ʻia kāu mau cell stem ponoʻī ma mua o kou loaʻa ʻana o ka chemotherapy dose kiʻekiʻe. A laila hoʻokomo hou ʻia kēia mau cell i loko o kou kino e kōkua i kāu ʻōnaehana e hoʻōla ma hope o ka mālama ʻana.
I ka holomua ʻana o ka noiʻi lapaʻau, loaʻa paha iā ʻoe ka manawa kūpono e komo i nā hoʻokolohua lapaʻau. Hiki i kēia ke pili i ka hoʻāʻo ʻana i nā lāʻau lapaʻau hou a i ʻole nā immunotherapy.
ʻO wai ka poʻe ma kāu hui mālama?
Inā ua ʻike ʻia ʻoe me Pineoblastoma, hiki i kāu hui mālama ma Nirogi Lanka ke komo pū me:
- He loea lolo
- He Kauka Lapaʻau
- He Kauka Lapaʻau ʻOnkolo
- He kauka lapaʻau
Aia kekahi mau hopena ʻaoʻao i kēia mau lāʻau lapaʻau?
ʻAe, hiki i kekahi mau lāʻau lapaʻau, ʻoiai ka radiation, ke hana i nā hopena ʻaoʻao. Hiki i kēia ke hoʻopilikia i kāu hana endocrine, me:
- Ka ulu ʻana
- Nā pae ikehu
- Ka hānau keiki ʻana
Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e kamaʻilio kikoʻī me kāu kauka e pili ana i nā hopena ʻaoʻao . E nānā mau lākou iā ʻoe a hana i nā hana e pono ai e hoʻokele i nā pilikia e kū mai ana.
Hiki iā ʻoe ke ola i ka Pineoblastoma?
ʻAe, nui nā maʻi e ola ana i ka Pineoblastoma. ʻO ka nui o ke ola ʻana o ʻelima makahiki no Pineoblastoma mai 60% a 69.5% . ʻOiai hiki i kēia hōʻailona ke hoʻololi i ke ola, aia nā lāʻau lapaʻau kūpono i hoʻolālā ʻia e kōkua iā ʻoe e ola maikaʻi a hoʻolōʻihi i kou ola.
He aha ka wānana no ka Pineoblastoma?
Ma hope o kāu hōʻoia ʻana, e kūkākūkā kāu kauka i kāu wānana. ʻOiai ʻaʻohe "lāʻau lapaʻau" hoʻokahi, nui nā koho lapaʻau e loaʻa ana. Hoʻoholo ʻia ka hopena o ka mea maʻi e nā mea e like me ke olakino holoʻokoʻa, ka pane a kou kino i ka lāʻau lapaʻau, a me ka wikiwiki o ka ulu ʻana o ka puʻupuʻu .
Ma hope o kāu hōʻoia ʻana, e loaʻa iā ʻoe nā manawa hoʻopaʻa pinepine i hiki i kāu hui lapaʻau ke nānā i nā hopena ʻaoʻao a hāʻawi i ke kākoʻo e pono ai.
Hiki ke pale ʻia ka Pineoblastoma?
ʻO ka mea pōʻino, ʻaʻohe ala i ʻike ʻia e pale aku ai i ka Pineoblastoma i kēia manawa .
Āhea ʻoe e ʻike ai i ke kauka?
Inā ʻike ʻoe a i kāu keiki paha i nā hōʻailona o Pineoblastoma, e like me:
- ʻO nā poʻo ʻeha mau
- Nā loli ʻano
- Ka paʻakikī me ka neʻe ʻana o nā maka
E ʻoluʻolu e ʻike koke i ke kauka.
Inā ʻoe e mālama ʻia nei a loaʻa iā ʻoe nā hopena ʻaoʻao hou, e hoʻomaopopo i kāu hui mālama. Inā ʻoe e hopohopo nei e pili ana i ka ulu ʻana a i ʻole ka ulu ʻana o kāu keiki i ka wā o ka mālama ʻana, e kūkākūkā i kēia mau ʻike me kāu pediatrician a i ʻole oncologist.
He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?
Ke hālāwai ʻoe me kāu kauka, he mea kōkua ke nīnau aku:
- He aha ka lāʻau lapaʻau āu e paipai nei?
- Ua laha anei ke kanesa?
- Pono anei au i ke ʻoki kino?
- He aha nā hopena ʻaoʻao e hiki ke loaʻa mai kēia lāʻau lapaʻau?
- He aha kaʻu wānana?
Hiki i ka lohe ʻana i ka huaʻōlelo "maʻi kanesa" ke kaumaha a hopohopo. He mea maʻamau loa ke manaʻo i ka haʻalulu a hopohopo paha no ka wā e hiki mai ana. Mai manaʻo mehameha. Eia kāu hui lapaʻau ma Nirogi Lanka e kōkua iā ʻoe e hoʻokele i kēia hōʻailona a koho i ka hoʻolālā lapaʻau kūpono loa iā ʻoe. E hilinaʻi i kāu mau hoaaloha a me kou ʻohana no ke kākoʻo. Ke hoʻomau nei ka noiʻi ʻana i nā lāʻau lapaʻau hou no Pineoblastoma e hāʻawi i ka manaʻolana.
Leka Lawe-Home
- He puʻupuʻu laha ʻole ka Pineoblastoma e ulu wikiwiki ana i loko o ka pineal gland o ka lolo.
- Hiki ke loaʻa nā hōʻailona e like me ke poʻo ʻeha, nā pilikia ʻike, ka nalowale o ke kaulike, a me nā loli o ke ʻano, pinepine ma muli o ka hydrocephalus (ka hōʻiliʻili ʻana o ka wai i loko o ka lolo).
- ʻO ke kumu pinepine he genetic; ʻoi aku ka nui o ka pilikia o ka poʻe me nā Retinoblastoma a i ʻole RB1/DICER1 gene mutations.
- Hoʻokomo ʻia ka ʻike ʻana i ka MRI, CT scans, a me nā biopsies.
- ʻOiai he paʻakikī, loaʻa nā lāʻau lapaʻau kūpono e like me ke ʻoki ʻana, ka radiation, a me ka chemotherapy.
- Inā ʻike ʻoe i nā hōʻailona, e ʻimi koke i ke kōkua lapaʻau . Mai kānalua e nīnau.
- E noho me ka manaʻolana a me ka ikaika; ʻaʻole ʻoe hoʻokahi ma kēia huakaʻi.
Lana ko mākou manaʻo he kōkua kēia ʻike. Inā he mau hopohopo kāu e pili ana i kou olakino, e ʻoluʻolu e hoʻonohonoho i kahi manawa me kahi loea mālama ola.
