Ua ʻike anei ʻoe i kēia maʻi kanesa laha ʻole? E kamaʻilio kākou e pili ana i ka NUT Carcinoma

Ua lohe paha ʻoe i ka NUT Carcinoma? ʻAʻole paha. No ka mea, he ʻano maʻi kanesa kakaʻikahi, kakaʻikahi loa, a ulu wikiwiki. Akā, he mea nui loa ka ʻike e pili ana i ia mea, no ka mea, hiki i kēia maʻi ke ulu i loko o kekahi. No laila, i kēia lā e kamaʻilio mākou e pili ana i ia mea me nā kikoʻī hou aku, me he mea lā e kamaʻilio ana mākou me kahi hoaaloha.

He aha ka NUT Carcinoma?

I ka ʻōlelo maʻalahi, ʻo NUT Carcinoma kahi ʻano maʻi kanesa e ulu wikiwiki loa a huhū . Ua manaʻo ʻia ʻo ia ka mea ʻoi loa o nā squamous cell carcinomas. I kēia manawa ke noʻonoʻo nei paha ʻoe i ke ʻano o nā squamous cell. He ʻano cell kēia i loaʻa i loko o ko mākou ʻili. ʻAʻole wale kēlā, akā ua uhi ʻia kekahi o nā ʻōpū o loko o ko mākou kino e kēia mau cell.

Hoʻokumu ʻia kēia NUT Carcinoma e kahi mutation genetic i loko o kā mākou mau genes. I ka pololei, hoʻokumu ʻia e kahi kīnā i loko o kahi gene i kapa ʻia ʻo `NUTm1`. ʻIke ʻoe, hāʻawi kēia mau genes i nā kuhikuhi i kā mākou mau cell i ke ʻano o ka hana. No laila, i ka wā e hewa ai kēia mau kuhikuhi, ʻo ia hoʻi, kahi `mutation`, hoʻomaka nā cell olakino e lilo i `nā cell cancerous`. A laila hōʻuluʻulu kēia mau cell cancerous a hana i nā `tumors`.

ʻO ka hapa pinepine, ulu kēia mau carcinoma NUT ma waenakonu o ko mākou kino, a i ʻole ma ka "midline" . ʻO ia ke kumu i kapa ʻia ai lākou ma mua ʻo NUT-midline carcinoma. Eia nō naʻe, hiki i kēia mau puʻupuʻu ke ulu ma nā wahi ʻē aʻe o ke kino.

Ma hea e hiki ai i kēia mau puʻupuʻu kanesa ke ulu?

ʻO ka poʻe i ʻike ʻia me ka NUT Carcinoma he mau puʻupuʻu ma nā wahi aʻe ma ko lākou kino:

• ʻO ke poʻo, ʻoi aku hoʻi ma nā sinuses (ʻo kēia ka mea maʻamau)
• Ma ka ʻāʻī (ʻike pinepine ʻia kēia)
• I loko o nā māmā (he mea maʻamau kēia)
• Ma ka ʻāpana waena o ka umauma, kahi i loaʻa ai ka puʻuwai a me nā māmā (ka 'mediastinum') (he mea maʻamau nō hoʻi kēia)
• ʻO ka pancreas
• nā puʻupaʻa
• Nā kelepa adrenal
• ʻōpū
• ʻŌpū mimi
• I loko o nā iwi (`Iwi`)

Hiki i kēia maʻi kanesa, i kapa ʻia ʻo NUT Carcinoma, ke ulu a laha koke, ʻoiai inā ua mālama ʻia . ʻO ia ka mea weliweli loa e pili ana i ia mea.

Pehea ka laha ʻole o ka NUT Carcinoma?

Ua manaʻo ʻia kēia he maʻi kanesa laha ʻole loa . Eia nō naʻe, ʻoi aku paha ka nui o nā maʻi ma mua o ko mākou manaʻo. Hōʻike ka International NUT Midline Carcinoma Registry i 20 mau hihia hou wale nō i kēlā me kēia makahiki.

ʻO kekahi kumu o kēia helu haʻahaʻa, ʻo ia ka paʻakikī o ka ʻike ʻana i kēia maʻi. Ua ʻike wale nā ​​kānaka ʻepekema i ke ʻano nui o kēia maʻi kanesa, ʻo ia ka "mutation" i loko o ka gene "NUTm1", i ka makahiki 2004. No laila, ʻaʻole i loaʻa i nā haukapila āpau nā "mea hoʻāʻo" e hiki ai ke ʻike i kēia gene.

E noʻonoʻo e like me ka ʻike ʻana i kahi maʻi hou. He manawa pōkole ia no ka loaʻa ʻana o nā hoʻokolohua kūpono ma nā wahi āpau.

Eia kekahi, ua maʻalahi ka huikau ʻana o ka NUT Carcinoma me nā ʻano maʻamau ʻē aʻe o ke kanesa. Hiki ke haʻi pololei inā he NUT Carcinoma kahi kanesa inā ʻike ʻia ka mutation gene `NUTm1`. ʻO kekahi poʻe i ʻike ʻia me nā `cancers poʻo a me ka ʻāʻī`, `cancers māmā`, a me kekahi mau ʻano kanesa ʻē aʻe paha he loaʻa kēia mutation gene.

Akā i kēia manawa, no ka mea ua piʻi ka ʻike i kēia ʻano maʻi kanesa, a no ka mea ua holomua ka ʻenehana e ʻike ai i kēia hoʻololi ʻana o ka genetic, ua maʻalahi ka maʻalahi o nā loea kanesa e ʻike i ka NUT carcinoma ma mua o ka wā ma mua.

ʻO wai ka mea e loaʻa ana i ka NUT Carcinoma?

ʻIke pinepine ʻia kēia maʻi kanesa i ka poʻe ʻōpio . ʻO ka makahiki waena i ka wā i ʻike ʻia ai he 24 mau makahiki. ʻO ke ʻano kēia, ma kahi o ka hapalua o ka poʻe i ʻike ʻia he ma lalo o 24 mau makahiki, a ʻo ka hapalua ʻē aʻe he poʻe ʻelemakule.

Eia nō naʻe, hiki i kēia maʻi kanesa ke ulu i loko o kekahi . Ua loaʻa ia i nā pēpē hānau hou, a i loko o ka poʻe i ko lākou mau makahiki 80. No laila, ʻaʻole hiki ke manaʻo ʻaʻole ia e hiki wale mai ma muli o ka makahiki.

He aha nā hōʻailona o ka NUT Carcinoma?

ʻO ka hapa nui o ka manawa, ʻaʻole hōʻike kēia maʻi kanesa i kekahi mau hōʻailona i nā pae mua . Hoʻomaka ka ʻike ʻia ʻana o nā hōʻailona ke ulu iki ka maʻi kanesa a hoʻomaka e hoʻopilikia i nā ʻiʻo a puni ka puʻupuʻu. I kēlā manawa, hiki iā ʻoe ke manaʻo luhi a maʻi ʻole.

Ma muli o ka ulu pinepine ʻana o nā ʻōpū i loko o nā lua sinus a me nā māmā, ʻo nā hōʻailona i hōʻike nui ʻia e pili ana iā lākou.

Nā hōʻailona maʻamau:

• Luhi nui/māluhiluhi loa (`Fatigue`)
• Ka pohō kaumaha i wehewehe ʻole ʻia
• He puʻupuʻu ʻeha

Nā hōʻailona o ka ʻōpū sinus:

• Kaomi sinus, paʻa, a ʻeha paha
• Ka kahe pinepine ʻana o ka ihu
• Paʻa ka ihu a i ʻole ka ʻūlū
• Ke nalowale nei kou ʻala

Nā hōʻailona o ka puʻupuʻu māmā:

• Ka pōkole o ka hanu a i ʻole ka pilikia o ka hanu ʻana
• ʻUlu mau loa (he ʻulu mau loa ʻaʻole e nalo)

Mai makaʻu i ka NUT Carcinoma no ka mea wale nō ua loaʻa iā ʻoe kēia mau hōʻailona. Akā inā hoʻomau kēia mau hōʻailona,He mea nui loa e ʻike pono i ke kauka a loaʻa ka ʻōlelo aʻo.

He aha ke kumu o ka NUT Carcinoma?

Hoʻokumu ʻia kēia maʻi kanesa e ka hui pū ʻana o ʻelua mau genes like ʻole, e hana ana i kahi gene hybrid ʻē (ʻo ia hoʻi ʻo "hybrid gene" a i ʻole "fusion gene"). I kēlā me kēia maʻi me NUT Carcinoma, ua hui pū ʻia ka gene `NUTm1` me kahi gene ʻē aʻe i manaʻo ʻole ʻia e hui pū me ia. ʻAʻole ke kumu o ka gene `NUTm1` i ka maʻi kanesa ma kāna iho, akā ʻo kēia gene hybrid i hana hou ʻia ke kumu o ka ulu ʻana o nā hunaola kanesa.

Ma kahi o 75% o ka poʻe me ka NUT carcinoma, ua hui pū ʻia ka gene `NUTm1` me ka gene `BRD4`. Ma kahi o 15% ʻē aʻe, ua hui pū ʻia ka gene `NUTm1` me ka gene `BRD3`. He mea kākaʻikahi loa, hiki ke hui pū ʻia me nā gene ʻē aʻe.

ʻAʻole maopopo i nā kānaka ʻepekema ke kumu o kēia mau hoʻololi genetic. Akā hoʻokahi mea i maopopo: ʻaʻole lākou i hoʻoilina ʻia. ʻAʻole hoʻi i pili nā mea pilikia maʻamau o ka maʻi kanesa, e like me ka puhipaka a me ka ʻike ʻana i nā carcinogens. Pono ka noiʻi hou aku e hoʻomaopopo i nā mea e hoʻohuli ai i kēia mau loli genetic.

Pehea e ʻike ʻia ai ka NUT Carcinoma?

Hoʻomaopopo nā kauka i kēia maʻi ma o kahi biopsy. Pili kēia i ka lawe ʻana i kahi hāpana ʻiʻo liʻiliʻi mai ka puʻupuʻu me ka hoʻohana ʻana i kahi nila hakahaka kūikawā. A laila hoʻouna ʻia ka hāpana i kahi keʻena hoʻokolohua e hoʻāʻo ʻia no nā hunaola kanesa.

E hoʻohana pū kāu kauka i nā kaʻina hana kiʻi kūikawā e nānā i ka puʻupuʻu i loko o kou kino a hoʻoholo i kona pae. ʻO ke kaʻina hana o ka hoʻoholo ʻana i ke koʻikoʻi o ke kanesa, ma muli o ka nui o ka puʻupuʻu, kona wahi, a inā ua pālahalaha (metastasized) mai ka puʻupuʻu mua i nā ʻāpana ʻē aʻe o ke kino. Hana ʻia ka metastasis kanesa i ka wā e haki ai nā hunaola kanesa mai ka puʻupuʻu mua, hele ma o ka wai lymph a i ʻole ke kahe koko, a hana i nā puʻupuʻu hou i nā ʻōpū a i ʻole nā ​​​​ʻiʻo mamao.

Hiki i kahi scan CT a me kahi scan MRI ke hōʻike i kahi o ka puʻupuʻu i loko o ke kino. Hiki i kahi scan PET ke haʻi inā ua pālahalaha ke kanesa.

He aha nā hoʻokolohua e hana ʻia e ʻike ai i kēia maʻi?

Hana ʻia kahi hoʻāʻo kūikawā i kapa ʻia ʻo `Immunohistochemistry` ma ka hale hana e ʻike ai inā aia ka gene `NUTm1` i loko o ka hāpana biopsy. Inā aia ka gene `NUTm1` i loko o ka hāpana (`maikaʻi`), ua ʻike ʻia he NUT Carcinoma.

ʻO nā hoʻokolohua ʻē aʻe e hiki ke hana ʻia e ʻike i kēia gene ʻo ia ka hoʻāʻo Fluorescence In Situ Hybridization (FISH) a i ʻole nā ​​​​hoʻokolohua genetic kūikawā ʻē aʻe.

Pehea e mālama ʻia ai ka NUT Carcinoma?

Hiki iā ʻoe ke wehe i ka puʻupuʻu.Pono paha ke ʻoki kino a me ka radiation therapy. Inā ua pālahalaha ke kanesa ma waho o ka puʻupuʻu, hiki ke hāʻawi ʻia ka chemotherapy . I ka manawa pinepine, hāʻawi pū ʻia kekahi a ʻoi aku paha o kēia mau lāʻau lapaʻau.

Eia nō naʻe, he mea paʻakikī loa ka mālama ʻana i ka maʻi kanesa NUT. I ka manawa pinepine, ʻoiai inā e pale ka mālama ʻana i ka maʻi kanesa mai ka ʻino ʻana, e hoʻomaka ia e ulu a laha hou ma hope o kekahi manawa.

ʻO ka mea nui loa i nā manawa e like me kēia, ʻo ia ke noho ikaika. Pono kākou e hoʻolohe i nā ʻōlelo a nā kauka a e kū pū me lākou i kēia.

Inā ua ʻike ʻia ʻoe me NUT Carcinoma, ʻo ka hoʻokolohua lapaʻau paha ke koho lapaʻau maikaʻi loa . ʻO nā hoʻokolohua lapaʻau he mau haʻawina e hoʻāʻo ana i nā lāʻau lapaʻau hou a i ʻole nā ​​​​ʻano hana i ka lāʻau lapaʻau. Ke noiʻi nei nā kānaka ʻepekema i ka lāʻau lapaʻau i kuhikuhi ʻia no NUT Carcinoma. ʻO ka lāʻau lapaʻau i kuhikuhi ʻia kahi lāʻau lapaʻau e kuhikuhi ana i ka hoʻololi genetic e hoʻolilo ai i kahi cell olakino e lilo i maʻi kanesa.

ʻO kekahi o nā lāʻau lapaʻau i kuhikuhi ʻia no ka maʻi kanesa NUT ʻo ia nā mea hoʻopaʻa `BET` . Hoʻopili kēia mau lāʻau i ʻelua mau genes, ʻo `BRD4` a me `BRD3`, i pili pinepine ʻia me ka gene `NUTm1`. Hoʻōki kēia mau mea hoʻopaʻa, me ka hui pū ʻana me kēlā gene `NUTm1`, i ka ulu ʻana o nā hunaola kanesa.

Hiki ke ho'ōla ʻia ka NUT Carcinoma?

ʻO ka mea pōʻino, ʻaʻohe lāʻau lapaʻau no ka NUT Carcinoma. He maʻi kanesa wikiwiki loa ia e pālahalaha koke ana i nā wahi ʻē aʻe o ke kino. Ma ka awelika, ʻo ka poʻe i loaʻa ka lāʻau lapaʻau e ola ana no kahi o 10 mau mahina ma hope o ka ʻike ʻia ʻana o ka maʻi. ʻElua a ʻekolu paha o kēlā me kēia ʻumi kānaka i ʻike ʻia me ka NUT Carcinoma e ola ana no ʻelua mau makahiki.

Akā, e like me nā maʻi kanesa āpau, ʻo kou wānana, a i ʻole pehea ʻoe e pane ai i ka lāʻau lapaʻau, e hilinaʻi ʻia i nā kumu he nui. ʻO kahi o ka puʻupuʻu, inā hiki ke wehe loa ʻia me ke ʻoki ʻana a i ʻole ka radiation therapy, a ua hōʻike kekahi mau noiʻi he kuleana ko nā genes ʻē aʻe i hui pū ʻia me ka gene NUTm1.

E wehewehe kāu kauka i nā pahuhopu o ka lāʻau lapaʻau ma muli o kāu hōʻailona.

Pehea wau e mālama ai iaʻu iho?

He mea nui e hoʻopuni iā ​​ʻoe iho me nā poʻe āu e hilinaʻi ai a kākoʻo i kēia manawa. E hoʻohana pono i nā kumuwaiwai āpau i loaʻa e kōkua iā ʻoe e hoʻokele i nā pilikia e hele mai me kēia maʻi.

Mālama palliative mai kāu kaukaE aʻo e pili ana i nā lawelawe. Hiki i nā loea mālama palliative ke kōkua iā ʻoe e hoʻokele i nā koi hou o kou ola ma muli o kēia hōʻailona. Hiki iā lākou ke kōkua iā ʻoe e hoʻokele i nā hopena ʻaoʻao o ka chemotherapy a me nā lāʻau lapaʻau radiation, a kōkua iā ʻoe e hoʻokō i nā kuleana o kēlā me kēia lā e hele mai me ka maʻi kanesa.

E hoʻomanaʻo, ʻaʻole ʻoe hoʻokahi. Mai kānalua e noi i ke kōkua a me ke kākoʻo.

He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?

Nui nā mea āu e makemake ai e nīnau i kāu kauka i ka manawa e like me kēia. Eia kekahi mau laʻana:

• Ua laha anei ke kanesa?
• Pono anei au e ʻike i kahi loea a i ʻole e hele i kahi haukapila kūikawā no ka mālama ʻana?
• He aha ke ʻano o ka lāʻau lapaʻau āu e paipai nei?
• He aha nā pōmaikaʻi a me nā pilikia kūpono o ka mālama ʻana?
• He aha nā pahuhopu o ka mālama ʻana?
• Hiki iā ʻoe ke kōkua iaʻu e loaʻa nā lawelawe kākoʻo ʻē aʻe, me ka mālama palliative?

Hiki i ka lāʻau lapaʻau no ka NUT Carcinoma ke ikaika pinepine. Me nā manawa pinepine o ka oncologist a me ke kaumaha o ke ola o kēlā me kēia lā, hiki ke paʻakikī ke kū ʻana me ka maʻi kanesa. Hiki i nā kumuwaiwai lapaʻau e like me ka mālama palliative ke kōkua. A ʻo ka hōʻea ʻana aku i kāu poʻe aloha ke lilo i kumu ikaika nui. Mai ka manawa āu e loaʻa ai kāu maʻi, he mea nui e kamaʻilio ākea me kāu hui mālama maʻi kanesa e hoʻomaopopo i nā koho mālama maikaʻi loa e hiki mai ana. He ʻokoʻa ka ʻike o kēlā me kēia kanaka i ka maʻi kanesa. Aia kāu hui lapaʻau ma laila e alakaʻi iā ʻoe i kēia manawa paʻakikī.

Nā mea nui e hoʻomanaʻo (Leka Lawe-Home)

ʻAe, e hōʻuluʻulu kākou i nā mea nui e pono ai ʻoe e hoʻomanaʻo mai nā mea a mākou i kamaʻilio ai:

• He ʻano maʻi kanesa kakaikahi ka NUT Carcinoma, akā wikiwiki loa ka laha ʻana a me ka huhū.
• Hoʻokumu ʻia kēia e kahi mutation i loko o ka gene ``NUTm1``. ʻAʻole kēia he mea i hoʻoilina ʻia.
• Hoʻomaka pinepine nā hōʻailona ma hope o ka holomua iki ʻana o ke kanesa. Mai hoʻowahāwahā iā ia, a e ʻimi i ke kōkua lapaʻau inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē aʻe e hoʻomau nei.
• Pono kahi biopsy a me nā hoʻokolohua genetic kūikawā no ka hōʻoia ʻana.
• He paʻakikī ka lāʻau lapaʻau, akā ke hana nei ka noiʻi ʻana i nā lāʻau lapaʻau hou. He koho maikaʻi paha nā hoʻokolohua lapaʻau.
• He mea nui loa ka mālama palliative a me ke kākoʻo o kāu poʻe aloha ma kēia huakaʻi.
• E kamaʻilio ākea e pili ana i nā mea āpau me kāu hui lapaʻau.

Manaʻolana wau he mea pono kēia ʻike iā ʻoe. ʻO ka ʻike ʻana i kēia maʻi e kōkua iā ʻoe e hana i nā hoʻoholo kūpono i ka wā e hiki mai ai.

ʻAi Ka maʻi ʻaʻai, ka maʻi ʻaʻai, nā hoʻololi ʻana o ka genetic, nā maʻi ʻaʻai laha ʻole, ka maʻi ʻaʻai squamous cell, nā hōʻailona o ka maʻi ʻaʻai, ka mālama ʻana i ka maʻi ʻaʻai