Loaʻa iā ʻoe kahi puʻupuʻu laha ʻole i loko o kou ʻōnaehana nerve? (Malignant Peripheral Nerve Sheath Tumor - MPNST) E aʻo kākou e pili ana i ia mea.

Ua ʻike anei ʻoe i kahi puʻupuʻu ma kekahi wahi o kou kino, ma kahi lima a wāwae paha, e ulu mālie ana? ʻO kēia mau puʻupuʻu, hiki ke hoʻomaka i kekahi manawa e like me ka liʻiliʻi o ka pī a ulu nui e like me ka ʻalani, ʻo ia ka mea a mākou e kamaʻilio ai i kēia lā. He maʻi koʻikoʻi kēia, akā he mea kakaikahi loa. Ua kapa ʻia ʻo ia he malignant peripheral nerve sheath tumor, a i ʻole MPNST no ka pōkole.

He aha ka maʻi ʻōpū nerve peripheral malignant (MPNST)?

I ka ʻōlelo maʻalahi, ʻo MPNST (Malignant Peripheral Nerve Sheath Tumor) he puʻupuʻu kanesa laha ʻole e ulu ana i loko o nā uhi pale (nā ʻūpā nerve) a puni nā aʻalolo i loko o kou kino. No kēia mau mea kekahi ʻano sarcoma palupalu . Kū aʻe lākou i loko o kāu ʻōnaehana nerve peripheral . E noʻonoʻo e pili ana, hiki iā ʻoe ke loaʻa i kēia mau puʻupuʻu ma kou mau lima a me kou mau wāwae. ʻAʻole wale ia, i kekahi manawa hiki iā lākou ke ulu pū i loko o ka pelvis, ka ʻōpū, ke poʻo, a me ka ʻāʻī. Hiki ke ho'ōla ʻia kēia mau puʻupuʻu ma ka wehe ʻana iā lākou ma ke ʻoki ʻana. Eia nō naʻe, pono mākou e hoʻomanaʻo i kekahi manawa hiki i kēia mau puʻupuʻu ke hoʻi hou mai .

Pehea ka laha ʻole o MPNST?

He ʻano maʻi laha loa kēia. Hoʻokahi wale nō i loko o 100,000 poʻe i ʻike ʻia me kēia ʻano maʻi ʻino peripheral nerve sheath tumor (MPNST) i kēlā me kēia makahiki. Hoʻopilikia pinepine ia i nā poʻe ma waena o 30 a me 50 mau makahiki .

Eia kekahi, ʻoi aku ka nui o ka poʻe me kahi maʻi genetic i kapa ʻia ʻo Neurofibromatosis type 1 (NF1) e hoʻomohala i ka MPNST. Ua ʻike ʻia aia ma waena o 25% a me 50% o ka poʻe me MPNST he NF1 pū kekahi .

Ma keʻano laulā, hiki ke ulu mua ka MPNST i nā poʻe me NF1 ma mua o ka poʻe me ka ʻole o NF1. Eia kekahi, ʻoi aku ka nui o ka loaʻa ʻana o ka MPNST i nā kāne me NF1 ma mua o ka poʻe me ka ʻole o NF1.

He aha nā hōʻailona o MPNST?

Hiki i nā MPNST ke ulu ma nā wahi āpau ma kou mau aʻalolo peripheral, akā ʻo ka hapa nui o lākou e hoʻopilikia i nā wahi e like me kou mau lima a me kou mau wāwae. I kekahi manawa hiki iā lākou ke ulu ma nā wahi e like me kou pelvis, umauma, ʻōpū, a i ʻole ke poʻo a me ka ʻāʻī. ʻO nā hōʻailona o nā MPNST:

• He puʻu e ulu mālie ana ma lalo o ka ʻili. Hiki i kēia mau puʻu ke liʻiliʻi e like me ka pī (ma kahi o 2 kenimika) a i ʻole ka nui e like me ka ʻalani (ma kahi o 10 kenimika).
• Ke manaʻo nei i ka ʻeha (ʻoiai inā loaʻa iā ʻoe ka NF1).
• ʻO ka Paresthesia (Mālie).
• Manaʻo o ka nāwaliwali ma nā lima a me nā wāwae.

He aha nā kumu o MPNST?

Ua hōʻike ʻia nā noiʻi he 50% o nā ʻōpū ʻōpū o ke aʻalolo peripheral malignant i hana ʻia e ka neurofibromatosis type 1 (NF1).Ua kapa ʻia ke kūlana. Hiki i nā kumu ʻē aʻe:

• Lapaʻau radiation: Ma kahi o 10% o ka poʻe me MPNST ua loaʻa i ka radiation therapy no nā maʻi ʻē aʻe.
• Nā hoʻololi hoʻoilina: Ua ʻike nā kānaka noiʻi he nui nā ʻano hoʻololi hoʻoilina like ʻole e hoʻolilo ai i nā pūnaewele ʻōpala nerve maʻamau i mau pūnaewele maʻamau, hoʻonui, a hana i nā ʻōpū.
• Kekahi ʻano neurofibromas: ʻO ka poʻe me ka plexiform neurofibroma e loaʻa ana i ka pilikia nui o ka hoʻomohala ʻana i ka MPNST.

Pehea e ʻike ʻia ai ka MPNST?

Ke ʻike ʻoe i ke kauka, e hana mua ʻo ia i kahi hoʻokolokolo kino a nīnau e pili ana i kou olakino holoʻokoʻa. E komo pū kēia me ka nīnau ʻana e pili ana i kou mōʻaukala olakino, ka mōʻaukala olakino ʻohana, a me nā hōʻailona āu e ʻike nei. Eia kekahi, hiki iā lākou ke hana i kēia mau mea:

• Nā hoʻāʻo kiʻi: Hiki i nā kauka ke hana i nā hoʻokolohua e like me MRI (Magnetic Resonance Imaging) a me PET (Positron Emission Tomography) scans .
• Biopsy: Hiki i ke kauka ke hana i kahi biopsy, e lawe ana i kahi hāpana kiko a nānā ʻia ma lalo o kahi microscope e kahi pathologist .
• Nā hoʻāʻo hoʻoilina: Inā loaʻa iā ʻoe kahi puʻupuʻu ʻōpala nerve peripheral malignant, hiki i kāu kauka ke ʻōlelo i ka hoʻāʻo genetic e ʻike inā loaʻa iā ʻoe a i ʻole kekahi lālā o ka ʻohana pili ka neurofibromatosis type 1 (NF1) a i ʻole kekahi ʻano ʻē aʻe o ka puʻupuʻu ʻōpala nerve , neurofibromatosis type 2 (Schwannomatosis) .

He aha nā lāʻau lapaʻau no MPNST?

ʻO ka maʻamau, hana nā kauka i ke ʻoki kino e wehe i kahi puʻupuʻu ʻōpala nerve peripheral malignant. Eia nō naʻe, aia kekahi mau hihia kahi hiki ʻole ai ke ʻoki kino. Eia kekahi laʻana:

• Nā nati nui (nā nati he 5 kenimika a ʻoi aku paha).
• Nā puʻupuʻu metastatic.
• Hiki ke hōʻino ʻia nā puʻupuʻu i kokoke loa i nā pūnaewele aʻalolo paʻakikī i ka wā o ke ʻoki ʻana.

I kēia mau hihia, hiki i nā kauka ke mālama i ka MPNST me ka hui pū ʻana o ke ʻoki kino, chemotherapy , a i ʻole ka radiation therapy . Hiki ke hāʻawi ʻia ka radiation therapy ma mua a ma hope paha o ke ʻoki kino.

Ke nānā nei nā kānaka noiʻi inā hiki ke hoʻohana ʻia ka immunotherapy a i ʻole ka lāʻau lapaʻau i kuhikuhi ʻia ma ke ʻano he mau lāʻau lapaʻau hou. Inā he maʻi ʻōpū nerve peripheral malignant kou, hiki iā ʻoe ke kūpono no kahi hoʻokolohua lapaʻau e hoʻāʻo ai i nā lāʻau lapaʻau hou.He mea maikaʻi paha ke kamaʻilio me kāu kauka e pili ana i ke komo ʻana.

He aha nā pilikia a i ʻole nā ​​hopena ʻaoʻao e hiki mai ana o ka lāʻau lapaʻau?

ʻO nā pilikia e hiki ke kū mai i ka wā o ke ʻoki ʻana:

• Nā pane i ka anesthesia laulā.
• Ke kahe nui ʻana o ke koko (hemorrhage).
• ʻEha.
• Nā ʻeha ʻoki.
• Maʻi ʻeha ʻoki.

ʻO nā lāʻau lapaʻau e like me ka chemotherapy a i ʻole ka radiation therapy hiki ke hana i nā hopena ʻaoʻao e like me:

• Ka maʻi pākī.
• Luhi.
• Ka luaʻi a me ka luaʻi.

He aha ka wānana no kekahi me MPNST?

ʻO ka wānana ka mea a kāu hui lapaʻau e manaʻo ai e like ʻoe ma hope o kou hoʻopau ʻana i ka lāʻau lapaʻau. I ke ʻano o MPNST, ua hoʻoholo ʻia kēia wānana e kekahi mau kumu:

• Ke kūlana NF1: Ke ulu kēia mau puʻupuʻu i nā poʻe me NF1, ʻoi aku ka haʻahaʻa o ka wānana no ka ho'ōla ʻana ma mua o nā poʻe me ka ʻole o NF1.
• Ke ʻano o ka puʻupuʻu: Nānā nā pathologists i nā ʻāpana ma lalo o kahi microscope a hoʻokaʻawale i nā puʻupuʻu ma ke ʻano he kiʻekiʻe a haʻahaʻa paha . ʻOi aku ka nui o ka manawa kūpono o nā puʻupuʻu kiʻekiʻe e loaʻa nā ʻāpana kanesa e māhele koke a pālahalaha.
• Ka nui o ka puʻupuʻu: Hiki i nā puʻupuʻu MPNST ke piʻi i ka nui a hiki i 10 kenimika. He paʻakikī ka wehe ʻana i nā puʻupuʻu nui ma ke ʻoki ʻana.
• Metastasis: Inā ua pālahalaha ka puʻupuʻu i nā wahi ʻē aʻe mai kahi i hoʻomaka ai, he mea paʻakikī paha ke mālama.

E like me kāu e ʻike ai, nui nā mea e hiki ke hoʻopilikia i kou mau manaʻolana hoʻōla, a ʻaʻole pili kēia mau mea āpau iā ʻoe. No laila, ʻoi aku ka maikaʻi o ke nīnau ʻana i kāu kauka no nā kikoʻī kikoʻī o kou kūlana. ʻOiai ʻo ia ka mea i ʻike i kou kūlana, hiki iā ia ke hāʻawi iā ʻoe i ka ʻike āu e pono ai.

He aha nā helu ola no MPNST?

ʻO nā helu ola he mau kuhi i hoʻokumu ʻia ma nā ʻike o nā poʻe ʻē aʻe i loaʻa i nā ʻōpū nerve peripheral malignant. Ma muli o ka laha ʻole o kēia mau ʻōpū, he mea paʻakikī i nā loea ke hāʻawi i nā helu pololei. Wahi a ka National Cancer Institute (US), ma waena o 23% a me 69% o ka poʻe me MPNST e ola ana i ʻelima mau makahiki ma hope o ka hōʻoia ʻana. He laulā nui kēlā, ʻeā? No laila, ʻoi aku ka maikaʻi o ka nīnau ʻana i kāu kauka e pili ana i kou kūlana.

Pehea wau e mālama ai iaʻu iho?

Inā loaʻa iā ʻoe ka maʻi ʻaʻai peripheral malignant, ke kū nei ʻoe i kahi maʻi kanesa laha ʻole e hiki ke hoʻi mai ma hope o ka mālama ʻana. Aia kekahi mau polokalamu e hiki ke kōkua iā ʻoe i kēia kūlana:

• Mālama palekana:Ma ka mālama palliative, e hana pū ʻoe me kahi hui o nā kauka i hoʻomaʻamaʻa kūikawā ʻia e hiki ke kōkua iā ʻoe e hoʻokele i nā hōʻailona o MPNST a me nā hopena ʻaoʻao o ka lāʻau. Eia kekahi, e hāʻawi pū lākou iā ʻoe i ke kākoʻo noʻonoʻo.
• Nā papahana ola maʻi kanesa: Ua like ke kanesa me kahi huakaʻi. Alakaʻi nā papahana ola maʻi kanesa iā ʻoe mai ka lā i ʻike ʻia ai ʻoe, ma o kāu mālama ʻana, a me ka mea e hana ai inā hoʻi mai ke kanesa.

I ka nānā mua ʻana, ʻo kahi ʻōhū nerve peripheral malignant (MPNST) ma kou lima a i ʻole kou wāwae paha e like me kahi puʻupuʻu e hiki ai iā ʻoe ke ʻeha a palapū paha. ʻO ka ʻike ʻana he ʻano maʻi kanesa kakaikahi ka puʻupuʻu a pono ia e ʻoki ʻia he mea hoʻohoka paha. Hiki ke paʻakikī ke lawe. Inā he mau nīnau kāu e pili ana i kou kūlana a i ʻole ka mea e manaʻo ai, maopopo i kāu hui lapaʻau. E hauʻoli lākou e lawe i ka manawa e pane i kāu mau nīnau a hoʻoponopono i nā hopohopo āu e loaʻa ai.

ʻO ka leka lawe home mai kēia ʻatikala

ʻAe, ke lana nei koʻu manaʻo ua loaʻa iā ʻoe kekahi ʻike no kēia maʻi kanesa laha ʻole i kapa ʻia ʻo MPNST a kākou i kamaʻilio ai i kēia lā. E hoʻomanaʻo, he maʻi laha ʻole kēia. Inā loaʻa iā ʻoe kekahi mau puʻupuʻu ʻē, ʻeha, mae, a pēlā aku ma kou kino e hoʻomau nei, e ʻike pono i ke kauka a loaʻa ka ʻōlelo aʻo. ʻO ka wā mua e ʻike ʻia ai, ʻo ka maʻalahi ka mālama ʻana.

ʻO ka mea nui loa, ʻaʻole ʻoe hoʻokahi. Aia kāu hui lapaʻau, ʻohana, a me nā hoaaloha e kōkua iā ʻoe. ʻO ka mea nui loa, ʻo ia ke noho ikaika a hahai i ka ʻōlelo aʻo a kāu kauka.

ʻO ka puʻupuʻu ʻōpala ʻino o ke aʻalolo peripheral, MPNST, maʻi ʻaʻai aʻalolo, puʻupuʻu, maʻi ʻaʻai, neurofibromatosis, NF1, ʻoki kino, radiation therapy, chemotherapy