He aha ka Choroid Plexus Carcinoma? E kamaʻilio kākou e pili ana i kēia maʻi ʻaʻai lolo weliweli akā laha ʻole!

I kekahi manawa, ke noʻonoʻo kākou i nā maʻi a kā kākou poʻe aloha, ʻoiai kā kākou poʻe liʻiliʻi, e kaumaha nui ana kākou a me ka makaʻu, ʻeā? I kēia lā, e kamaʻilio kākou e pili ana i kahi ʻano maʻi ʻaʻai lolo koʻikoʻi iki, akā he mea kakaikahi loa . Mai makaʻu koke i kou lohe ʻana i kona inoa. No ka mea, ʻo ka ʻike ʻana i kekahi maʻi he ikaika nui ia e kū ai i mua. No laila, e kamaʻilio kikoʻī kākou e pili ana i kēia "Choroid Plexus Carcinoma".

He aha ka Choroid Plexus Carcinoma?

I ka ʻōlelo maʻalahi, ʻo kēia `Choroid Plexus Carcinoma` he maʻi ʻaʻai e ulu ana i loko o kahi ʻiʻo kūikawā i kapa ʻia ʻo ``choroid plexus`` i loko o ko kākou lolo. E noʻonoʻo wale, aia nā ʻāpana like ʻole a me nā ʻano ʻiʻo like ʻole i loko o ko kākou lolo. Aia kēia ʻiʻo ``choroid plexus`` i loko o nā lua (``ventricles``) i loko o ka lolo. E like me ka pōpō wai, ʻo kēia ʻiʻo ``choroid plexus`` ka mea nui e kōkua ai i ka hana ʻana i ka ``cerebrospinal fluid`` (``CSF``) e pale a hānai i ko kākou lolo a me ke kaula spinal e holo ana i lalo o ka iwi kuamoʻo.

He puʻupuʻu ʻino kēia. ʻO ia hoʻi, ulu koke nā pūnaewele i loko, a hiki ke laha i nā wahi ʻē aʻe. Ua kapa pū nā kauka i kēia he "puʻupuʻu choroid plexus papa 3." Ulu koke kēia mau mea a hoʻāʻo e laha ma loko o ka "ʻōnaehana nerve waena" (CNS) ma o ka wai "CSF". ʻO ia ke kumu e paʻakikī ai ka mālama ʻana iā lākou i kekahi manawa.

Pehea ka maʻamau o kēia maʻi?

E kahaha paha ʻoe i ka lohe ʻana i kēia, akā ʻo kēia maʻi i kapa ʻia ʻo 'choroid plexus carcinoma' he maʻi laha ʻole ia . E noʻonoʻo wale, mai loko mai o nā ʻano 100 o nā puʻupuʻu lolo, ʻaʻole i hiki i ka 1% he 'choroid plexus tumors'. ʻEkolu ʻano o nā puʻupuʻu 'choroid plexus'. I waena o lākou, ʻo kēia 'choroid plexus carcinoma' ka mea laha ʻole a ʻo ia wale nō ke ʻano o ka maʻi kanesa, ʻo ia hoʻi ke ʻano 'malignant' . ʻO ka mea kaumaha, ʻo kēia maʻi ka hapanui e pili ana i nā pēpē a me nā keiki ʻōpio .

He aha nā hōʻailona o kēia maʻi? Pehea mākou e ʻike ai?

No laila, he aha nā hōʻailona o kēia maʻi? Hiki ke loli kēia ma muli o ka nui o ka puʻupuʻu, kona wahi ma ka lolo, a me ka makahiki o ke keiki. Akā, ma ke ʻano laulā, aia kekahi mau hōʻailona e makaʻala ai:

• Manaʻo mau o ka luhi nui a me ka palaualelo: Me he mea lā ʻaʻole ola ke keiki, ʻaʻole lākou e holo a pāʻani e like me ka wā ma mua. Me he mea lā ua hiamoe mau lākou.
• ʻEha poʻo: ʻAʻole hiki i kahi keiki ke haʻi pololei i kēia, akā hiki iā mākou ke ʻike ma o nā mea e like me lākou e paʻa ana i ko lākou mau poʻo, e uē pinepine ana, a hōʻole e ʻai.
• Ka huhū a i ʻole ka hoʻopaʻapaʻa: Hiki i kahi keiki ʻōpiopio ke hoʻopaʻapaʻa a paʻakikī ke hōʻoluʻolu. Hiki iā lākou ke ʻoi aku ka paʻakikī ma mua o ka wā ma mua.
• Ka luaʻi a me ka luaʻi: ​​E ʻoi aku ka ʻino o kēia, ʻoiai i ke kakahiaka.
• Ka maneo a nāwaliwali paha ma kekahi mau ʻāpana o ke kino: Manaʻo paha ka lima a i ʻole ka wāwae me he mea lā ua maneo loa.
• Nā ʻūlū: Nā ʻūlū koke a me ka nalowale o ka ʻike.
• Nā pilikia ʻike: Hiki iā ʻoe ke ʻike i ka ʻike pōwehiwehi a ʻike paha i ʻelua kiʻi i ka manawa hoʻokahi (diplopia). Hiki i kahi keiki ʻōpiopio ke hamo pinepine i ko lākou mau maka a paʻakikī paha ke kālele.
• Ka nui o ke poʻo i hoʻonui ʻia: I nā pēpē ʻōpio, hiki ke hoʻonui ʻia ke poʻo i ka piʻi ʻana o ke kaomi i loko o ka lolo no ka mea ʻaʻole i hui piha ʻia nā iwi o ke poʻo.

Mai makaʻu i ka loaʻa ʻana o kēia maʻi no ka mea wale nō he hoʻokahi a ʻelua paha o kēia mau hōʻailona kou. Eia nō naʻe, inā hoʻomau kēia mau hōʻailona, ​​​​he mea naʻauao ke ʻike pono i ke kauka .

No ke aha e loaʻa ai kēia ʻano maʻi? He aha ke kumu?

ʻO kaʻoiaʻiʻo, he mea paʻakikī i nā kauka ke haʻi pololei i ke kumu e loaʻa ai i kekahi poʻe ka choroid plexus carcinoma. ʻO ka maʻamau, ulu kekahi maʻi kanesa i ka wā e loli ai kekahi o nā genes i loko o ko mākou kino, kahi a mākou e kapa nei he mutation. ʻO kēia mutation genetic ke kumu o nā cell olakino e lilo i mau cell cancer a hoʻonui me ka hiki ʻole ke kāohi ʻia, ulu i loko o kahi puʻupuʻu, a i kekahi manawa e laha ma ke kino.

Aia kekahi mau mea pilikia e hoʻopilikia ai i kēia?

Hiki i kekahi ke loaʻa i kēia maʻi i kapa ʻia ʻo 'choroid plexus carcinoma'. Eia nō naʻe, ua ʻike ʻia he hiki i kekahi mau mea (kapa mākou iā lākou he 'nā kumu pilikia') ke hoʻonui i nā manawa kūpono o ka loaʻa ʻana. E nānā kākou i ke ʻano o lākou:

• ʻO ka maʻi Aicardi: He maʻi hoʻoilina laha ʻole kēia. Loaʻa i nā keiki i hānau ʻia me kēia maʻi kekahi mau ʻano ʻē i ka ulu ʻana o ka lolo, e ʻoi aku ka nui o ka loaʻa ʻana o nā puʻupuʻu choroid plexus. ʻAʻole kēia i hoʻoilina pinepine ʻia.
• ʻO ka maʻi Li-Fraumeni: He ʻano maʻi laha ʻole kēia. ʻOi aku ka nui o ka poʻe me kēia maʻi e loaʻa i nā ʻano maʻi kanesa like ʻole. Hoʻokumu pinepine ʻia kēia e kahi loli gene i hoʻoili ʻia mai kekahi makua a i ke keiki.
• Moe pilikino: ʻOiai ʻaʻole maopopo ke kumu pololei, hōʻike nā helu helu he ʻoi aku ka nui o ka loaʻa ʻana o kēia maʻi i nā wahine.

Pehea e ʻike ai nā kauka i kēia maʻi? (Diagnosis)

No laila, pehea e hōʻoia ai nā kauka inā he choroid plexus carcinoma kou? Hana lākou i kēia ma ka hoʻolohe pono ʻana i kāu mau hōʻailona, ​​​​hana i kahi hoʻokolokolo kino, a laila hana i nā hoʻokolohua like ʻole. Hiki ke ʻokoʻa kēia mau hoʻokolohua ma muli o kou mau makahiki, a i ʻole ka makahiki o kāu keiki:

• Hoʻāʻo noʻonoʻo: Hoʻāʻo kēia i ka maikaʻi o kāu hana, e like me ka hoʻomanaʻo, ka nānā ʻana, a me ka hiki ke aʻo.
• He hoʻokolohua neurological piha: E nānā kēia i ka ʻike, ka lohe, nā pilikia kaulike, nā reflexes, a me ka hoʻonohonoho ʻana o nā ʻāpana like ʻole o ke kino.
• ʻO kahi scan MRI (Magnetic Resonance Imaging) o ka lolo a i ʻole nā ​​​​hoʻokolohua kiʻi ʻē aʻe (e like me ka CT scan): ʻO kēia ka hoʻokolohua koʻikoʻi loa. Hiki iā ia ke hōʻike inā he mau puʻupuʻu i loko o ka lolo, pehea ko lākou nui, kahi o lākou e kū nei, a inā he maʻi i kapa ʻia ʻo hydrocephalus (kahi hōʻiliʻili ʻana o ka wai cerebrospinal (CSF) i loko o nā lua o ka lolo, e hoʻonui ai i ke kaomi).
• Hoʻāʻo DNA (hoʻāʻo genetic): Hiki ke hana i kēia hoʻāʻo e ʻike inā he mau loli genetic e pili ana i nā kūlana e like me ka maʻi Li-Fraumeni i ʻōlelo mua ʻia a i ʻole ka maʻi Aicardi.
• ʻO ke kī ʻana o ka iwi kuamoʻo (lumbar puncture): Pili kēia i ke komo ʻana i kahi nila lahilahi i loko o ke kua haʻahaʻa a lawe i kahi hāpana liʻiliʻi o ka CSF. A laila hoʻouna ʻia i kahi keʻena hoʻokolohua e hoʻāʻo ʻia no nā hunaola kanesa.

He aha nā lāʻau lapaʻau no kēia?

Inā ua hōʻoia ʻia he puʻupuʻu kou e like me kēia, he aha kāu e hana ai ma hope? Nui nā koho lapaʻau. ʻO ke ʻoki kino ka mea nui.

• ʻOki kino: Hana nā neurosurgeons i ke ʻoki lolo e wehe loa i ka puʻupuʻu. He ʻoki kino paʻakikī loa kēia. Lawe ʻia kahi ʻāpana liʻiliʻi o ka puʻupuʻu i wehe ʻia (he biopsy) a hoʻouna ʻia i kahi keʻena hoʻokolohua e hōʻoia inā he choroid plexus carcinoma a i ʻole kekahi ʻano ʻē aʻe.

Inā hōʻoia kēia biopsy i ka choroid plexus carcinoma, a ʻaʻole hiki ke wehe loa ʻia ka puʻupuʻu, a inā ua pālahalaha ke kanesa, pono paha ʻoe a i ʻole kāu keiki i nā lāʻau lapaʻau hou aʻe. ʻO kēia mau mea:

• Kemoterapi: ʻO kēia ka hāʻawi ʻana i ke kino i nā ʻano lāʻau like ʻole e pepehi i nā hunaola kanesa. Pepehi kēia mau lāʻau i nā hunaola kanesa e māhele wikiwiki ana.
• Lapaʻau radiation: Hoʻohana kēia i nā kukuna ikehu kiʻekiʻe (e like me nā kukuna X) e kuhikuhi a luku i nā hunaola kanesa.

Hiki ke hoʻohana pū ʻia kekahi a ʻoi aku paha o kēia mau lāʻau lapaʻau. Hoʻoholo ʻia kēia e kahi hui o nā kauka loea, me ka noʻonoʻo ʻana i nā kumu he nui e like me ke kūlana o ka mea maʻi a me ke ʻano o ka puʻupuʻu.

He aha nā pilikia e hiki ke loaʻa ma hope o ke ʻoki kino?

E like me nā ʻoki kino āpau, aia kahi manawa liʻiliʻi o nā pilikia ma hope o ke ʻoki ʻana o ka lolo. ʻOiai ʻaʻole maʻamau, ʻo kekahi o nā mea i ʻike ʻia i kekahi manawa:

• Ke kahe ʻana o ke koko a i ʻole ka pehu ʻana i loko o ka lolo.
• Ka paʻakikī o ka noʻonoʻo, ka huikau a i ʻole ka delirium.
• ʻEha poʻo mau.
• Ka maʻi ma kahi i hana ʻia ai ke ʻoki.
• Ka nalowale o ka hoʻomanaʻo a i ʻole ka paʻakikī i ka ʻōlelo ʻana.

E hoʻomaopopo mua nā kauka iā ʻoe e pili ana i kēia mau mea.

Ke hoʻomohala ʻia nei nā lāʻau lapaʻau hou no kēia maʻi?

ʻAe! Ke holomua nei ka ʻepekema lapaʻau i kēlā me kēia lā. No laila, ke hoʻomau nei ka noiʻi e loaʻa nā lāʻau lapaʻau hou a ʻoi aku ka maikaʻi no kēia maʻi, ʻo "choroid plexus carcinoma." Aia paha kekahi o kēia mau mea i ke kahua noiʻi (ʻo "clinical trial"). Eia kekahi mau laʻana:

• Immunotherapy: He ʻano hana hoihoi loa kēia. Pili ia i ka hoʻoulu ʻana i ko mākou ʻōnaehana pale ponoʻī (ka ʻōnaehana e pale iā mākou mai nā maʻi) a me ka hāʻawi ʻana iā ia i nā lāʻau lapaʻau e kōkua iā ia e ʻimi a luku i nā hunaola kanesa.
• Lapaʻau i kuhikuhi ʻia: Pili kēia i ka hāʻawi ʻana i nā lāʻau lapaʻau e kuhikuhi ana i nā loli genetic kikoʻī e hoʻoulu ai i ka maʻi kanesa a hoʻopilikia wale i kēlā mau loli. ʻO ka hopena, emi ka hōʻino ʻana i nā cell olakino.

Hiki iā ʻoe ke aʻo hou aʻe e pili ana i kēia mau lāʻau lapaʻau hou ma ke kamaʻilio ʻana me kāu kauka.

Pehea ke ʻano o ka hoʻōla ʻana ma hope o ka lāʻau lapaʻau?

ʻO ka manawa e hoʻōla ai ma hope o ka mālama ʻana, me ka wā e hiki ai iā ʻoe ke hoʻi i ka hana a i ke kula paha, ma muli o kekahi mau kumu. Eia kekahi o lākou:

• Kou makahiki a me kou olakino holoʻokoʻa.
• ʻO kahi o ka puʻupuʻu, kona nui, a me ka nui o nā puʻupuʻu.
• Inā ua loaʻa iā ʻoe nā lāʻau lapaʻau hou e like me ka chemotherapy a i ʻole ka radiation therapy, ko lākou hopena.

No laila, he mea nui e hahai pono i nā ʻōlelo a kāu kauka . No ka nānā ʻana inā e holo pono ana ke kaʻina hana ho'ōla, e noi pinepine nā kauka iā ʻoe e hana i nā hoʻokolohua `kiʻi` o ka lolo (e.g. `MRI scans`). He mea nui loa ka hana pololei ʻana i nā mea āpau no kou ho'ōla wikiwiki ʻana.

He aha ka wānana no kēia maʻi?

ʻO kēia nīnau ka mea kaumaha nui loa ma ka noʻonoʻo o nā kānaka he nui. ʻOkoʻa loa ka nānā ʻana no ka choroid plexus carcinoma, ʻo ia hoʻi, ka manawa e hoʻōla ai a me ka manaʻolana o ke ola, mai kēlā kanaka a i kēia kanaka. Aia kekahi mau kumu koʻikoʻi e hoʻopilikia nei iā ia:

• Ka makahiki o ka mea maʻi (hiki ke ʻokoʻa nā hopena no nā keiki ʻōpio).
• Ke kūlana olakino holoʻokoʻa o ka mea maʻi.
• Inā paha ua wehe ʻia ka puʻupuʻu holoʻokoʻa i ka wā o ke ʻoki ʻana, a i ʻole he hapa wale nō paha. (Inā hiki ke wehe loa ʻia ka puʻupuʻu, maikaʻi ka nānā ʻana.)

Eia kekahi, hoʻopilikia kēia mau mea i ka nānā ʻana:

• Inā hoʻi mai ka puʻupuʻu ma hope o ke ʻoki ʻana a i ʻole nā ​​​​lāʻau lapaʻau ʻē aʻe ('recurrence`).
• Inā pālahalaha ke kanesa (metastasizes) mai kona wahi mua i nā ʻāpana ʻē aʻe o ke kino, no ka laʻana, ke kaula kuamoʻo.

ʻAʻole like nā kānaka a pau, no laila ʻoi aku ka maikaʻi a me ka pololei loa e nīnau i kāu hui lapaʻau i ka mea e manaʻo ai ma muli o kou kūlana.

Ma ke ʻano helu, ʻo ka nui o ke ola ʻana o ʻelima mau makahiki no ka choroid plexus carcinoma ma waena o 40% a me 60%. ʻO ke ʻano kēia, mai loko mai o 10 mau kānaka i ʻike ʻia me ka maʻi, e ola ana he 4 a 6 no ʻelima mau makahiki a ʻoi aku paha. Eia nō naʻe, no kekahi me ke ʻano genetic i ʻōlelo ʻia ma mua ʻo Li-Fraumeni syndrome, ua ʻōlelo ʻia he haʻahaʻa kēia pakeneka e like me 30 %.

Mai hopohopo i kēia mau helu helu. He awelika wale nō kēia. He ʻokoʻa ke kūlana o kēlā me kēia kanaka, ka pane ʻana i ka lāʻau lapaʻau, a me ke kaua. Me ka holomua o ka ʻepekema lapaʻau, ke hoʻomaikaʻi nei kēia mau kūlana i kēlā me kēia lā.

Āhea mākou e ʻike pono ai i ke kauka?

Inā hoʻomau ʻoe a i ʻole kāu keiki i kekahi a ʻoi aku paha o nā hōʻailona i ʻōlelo ʻia ma luna, ʻoiai inā ʻike ʻoe i kekahi o kēia mau hōʻailona, ​​​​pono ʻoe e ʻike i ke kauka kūpono me ka hoʻonele ʻole i ka manawa :

• Nā loli maopopo o ke ʻano. Eia kekahi laʻana, ka huikau koke, ka huhū nui, ka hoʻonāukiuki.
• Paʻakikī ka hanu ʻana.
• Ka paʻakikī o ka hele wāwae, ka nalowale o ke kaulike.
• Nā hopu koke (`Seizures`).
• ʻEha poʻo ʻino loa, ʻaʻole hoʻi e hiki ke hoʻomanawanui.
• Nā loli koke i ka ʻike a i ʻole ka ʻōlelo.

He aha nā nīnau koʻikoʻi e nīnau aku ai i ke kauka?

Ke ʻike ʻoe i kāu kauka, hiki iā ʻoe ke nīnau i nā nīnau e like me kēia e loaʻa ai kahi ʻike maopopo o kou kūlana. Mai makaʻu e nīnau i nā mea āpau ma kou manaʻo:

• "E ke kauka, he aha ke ʻano o ka puʻupuʻu lolo aʻu/kaʻu keiki?"
• "He aha nā lāʻau lapaʻau maikaʻi loa no kēia? ʻO wai o lākou ka mea kūpono loa noʻu/kaʻu keiki?"
• "He aha nā hopena ʻaoʻao e hiki ke loaʻa ma hope o ka lāʻau lapaʻau?"
• "ʻEhia pinepine e pono ai iaʻu/kaʻu keiki e hana i nā hoʻokolohua e like me ke kiʻi ʻana i nā kiʻi 'imaging'?"
• "He aha ka manaʻo o kaʻu/kaʻu keiki me kēia maʻi?"

He ʻōlelo i ka ʻohana, ʻoi aku hoʻi i nā mākua...

Ke ʻike ʻia kāu keiki me ka choroid plexus carcinoma, he mea maʻamau ka manaʻo e like me ka hiolo ʻana o kou honua holoʻokoʻa. Hoʻomaka koke nā mea āpau. E hālāwai ʻoe me kahi hui nui o nā kauka, me nā neurologists hou a me nā oncologists. E piha kāu kalena me nā hoʻokolohua, nā manawa kauka, a me nā ʻoki kino. Ma hope o ka pīhoihoi mua, pono ʻoe e kali i kahi manawa lōʻihi no ka hoʻi ʻana mai o nā hopena, no nā ʻanuʻu aʻe. Hiki i kēia manawa kali ke kaumaha a paʻakikī loa.

Akā, he mea waiwai nui kēlā me kēia manawa liʻiliʻi e hiki ai iā ʻoe ke hoʻolilo me kāu keiki i loko o ia manawa. E aʻo i kahi mele lullaby hou e hoʻomoe iā ia, e nānā pū i kāna mau kiʻiʻoniʻoni punahele a i ʻole nā ​​​​kiʻiʻoniʻoni, e hoʻāʻo e ʻimi i kahi mea hou e hiki ai iā ʻoe ke hana pū e lawe mai iā ʻoe i ka hauʻoli.

He mea paʻakikī ke ola i kēia manawa, e hopohopo nei no ka scan aʻe, ka hōʻike hoʻāʻo aʻe. Akā, ʻaʻohe mea a kēlā scan a hōʻike paha e hōʻike ai, hiki iā ʻoe ke waiho i kou mau hopohopo a me kou mau makaʻu a hauʻoli no ka manawa makamae āu i hoʻolilo ai me kāu pēpē. ʻAʻole ʻoe hoʻokahi. Nui ka poʻe e hiki ke kōkua iā ʻoe a hoʻolohe iā ʻoe.

ʻO ka mea hope loa, nā mea nui e hoʻomanaʻo (Leka Lawe-Home)

ʻAe, e hōʻuluʻulu kākou i nā mea nui e pono ai ʻoe e hoʻomanaʻo e pili ana i kēia "Choroid Plexus Carcinoma" i kūkākūkā lōʻihi ʻia?

• ʻO ka Choroid Plexus Carcinoma kahi ʻano maʻi kanesa kakaikahi akā ulu wikiwiki e ulu ana i loko o nā ʻiʻo o ka lolo i kapa ʻia ʻo choroid plexus. Hoʻopilikia nui ia i nā keiki ʻōpio a me nā pēpē .
• Inā loaʻa iā ʻoe kekahi a ʻoi aku paha mau hōʻailona e like me ka hiamoe nui, ka ʻeha poʻo mau, ka luaʻi pinepine ʻana, nā hopu ʻana, a i ʻole nā ​​​​pilikia ʻike ma muli o nā kumu i ʻike ʻole ʻia, mai hoʻonele i ka manawa a e ʻimi koke i ke kōkua lapaʻau .
• ʻO nā lāʻau lapaʻau nui i hoʻohana ʻia, ʻo ia ke ʻoki kino, ka chemotherapy, a me ka radiation therapy . I kekahi manawa, hiki ke hoʻohana ʻia ma mua o hoʻokahi o kēia mau lāʻau lapaʻau.
• ʻOiai he huakaʻi paʻakikī a paʻakikī kēia, inā ʻo ʻoe a i ʻole kekahi o kou ʻohana e kū nei i kēia kūlana, e hoʻomanaʻo ʻaʻole ʻoe hoʻokahi . E lanakila ma luna o kēia me ke kākoʻo o kāu hui lapaʻau, ʻohana, a me nā hoaaloha. He mea nui loa ka noho maikaʻi a ikaika i kēia hakakā.

Lana ko mākou manaʻo he mea pono kēia ʻike iā ʻoukou. Ola maikaʻi i nā mea a pau!

ʻO ke kanesa o ka lolo, ka maʻi kanesa o ka wā kamaliʻi, ka wai cerebrospinal, nā hōʻailona o ke kanesa, ka mālama ʻana i ke kanesa, ka puʻupuʻu lolo, ke kanesa o ka wā kamaliʻi