He aha ka Sarcoma Ewing? Nā Hōʻailona, Nā Kumu, a me ka Lapaʻau

ʻO ka sarcoma Ewing kahi ʻano maʻamau ʻole o ka maʻi kanesa e pili nui ana i nā iwi a me nā pūnaewele palupalu, ʻoi aku ka nui ma nā keiki a me nā ʻōpio. Hoʻomaka pinepine kēia maʻi kanesa hoʻouluulu i nā iwi lōʻihi o nā lima a me nā wāwae, ka pelvis, nā iwi ʻaoʻao, a i ʻole ke kua, ʻoiai hiki ke loaʻa i nā pūnaewele palupalu e like me nā ʻiʻo a i ʻole ka momona.

ʻOiai hiki i ka ʻike ʻana ke manaʻo nui, ua hoʻomaikaʻi nui nā holomua i ka lapaʻau i nā hopena no nā mea maʻi he nui. Hiki i ka hoʻomaopopo ʻana i kēia kūlana ke kōkua iā ʻoe e hoʻokele i ka huakaʻi e hiki mai ana me ka hilinaʻi nui a me ka maopopo.

He aha ka Sarcoma Ewing?

ʻO ka sarcoma Ewing kahi ʻohana o nā maʻi kanesa i kapa ʻia ʻo Ewing sarcoma family of tumors (ESFT). Hoʻomaka kēia mau maʻi kanesa i ka wā e hoʻomaka ai kekahi mau pūnaewele e ulu me ka manaʻo ʻole, e hana ana i nā ʻōpū e hiki ke pālahalaha i nā ʻāpana ʻē aʻe o ke kino inā waiho ʻole ʻia.

Hoʻopili pinepine kēia maʻi kanesa i nā kānaka ma waena o nā makahiki 10 a me 20, ʻoiai hiki ke loaʻa i kēlā me kēia makahiki. He 1% wale nō ia o nā maʻi kanesa o nā keiki a pau, e hana ana iā ia he mea maʻamau ʻole akā pono i ka mālama kūikawā ke loaʻa.

Ua loaʻa i ka maʻi kanesa kona inoa mai ka Dr. James Ewing, nāna i wehewehe mua iā ia i ka makahiki 1921. ʻO ka mea e hoʻokaʻawale ai i ka sarcoma Ewing, ʻo ia kona ʻano genetic kūikawā a me ke ʻano o kona pane ʻana i kekahi mau lapaʻau.

He aha nā Hōʻailona o ka Sarcoma Ewing?

Hiki i nā hōʻailona mua o ka sarcoma Ewing ke kuhihewa ʻia i nā hōʻeha maʻamau a i ʻole nā ʻeha ulu, ʻo ia ke kumu e pono ai ke nānā pono i nā hōʻailona e mau a ʻoi aku ka maikaʻi ma mua o ka manawa.

ʻO nā hōʻailona maʻamau loa e komo pū ana:

• ʻEha mau i nā iwi a i ʻole nā hui e hiki ke ʻoi aku ka maikaʻi i ka pō a i ʻole me ka hana
• ʻO ka pehu a i ʻole kahi ʻāpana i ʻike ʻia kokoke i ka wahi i pilikia
• Nā haki iwi i wehewehe ʻole ʻia e loaʻa me ka hōʻeha iki
• Ke kīloi a i ʻole ka pilikia i ka hoʻoneʻe ʻana i ka wahi i pilikia
• Ka luhi a me ka manaʻo maʻamau o ka maʻi
• Ka wela e hele mai ana a hele aku me ka kumu maopopo ʻole
• Ka nalowale o ke kaumaha me ka ho'āʻo ʻole

Hiki i nā hōʻailona ʻaʻole maʻamau akā ʻoi aku ka hopohopo ke komo pū me ka pilikia o ka hanu inā pili ka ʻōpū i ka wahi umauma, a i ʻole ka numbness a me ka nāwaliwali inā e kaomi ana i nā aʻalo.

He aha nā ʻAno o ka Sarcoma Ewing?

Hoʻokaʻawale nā kauka i ka sarcoma Ewing ma muli o kahi e ulu ai ia ma kou kino. Kūkulu nā ʻano nui i nā hoʻoholo lapaʻau a hāʻawi iā ʻoe i kahi kiʻi maopopo o ka mea e manaʻo ai.

Hoʻomohala ka sarcoma Ewing Skeletal i nā iwi a he 80% o nā hihia a pau. Hoʻopili pinepine ia i ka pelvis, nā iwi ʻaoʻao, ke kua, a me nā iwi lōʻihi o nā lima a me nā wāwahi. Hoʻokumu pinepine kēia ʻano i ka ʻeha iwi a hiki ke alakaʻi i nā haki.

Hoʻomohala ka sarcoma Ewing Extraosseous i nā pūnaewele palupalu ma mua o nā iwi, e helu ana i ka 20% o nā hihia. Hiki ke ulu i nā ʻiʻo, momona, a i ʻole nā pūnaewele palupalu ʻē aʻe ma nā wahi a pau o ke kino, me ka pā umauma, nā lima, nā wāwahi, a i ʻole ka pelvis.

Loaʻa i nā ʻano ʻelua nā ʻano genetic like a pane i nā ala lapaʻau like, ʻoiai hiki i ka wahi ke hoʻopili i nā koho ʻoki a me ka hoʻolālā lapaʻau holoʻokoʻa.

He aha nā Kumu o ka Sarcoma Ewing?

Hoʻomohala ka sarcoma Ewing ma muli o nā loli genetic kūikawā e hana kūlohelohe i nā pūnaewele, ʻaʻole ma muli o kekahi mea āu a i ʻole kou ʻohana i hana hewa ai. ʻAʻole hoʻoilina ʻia kēia mau loli mai nā mākua i ka hapanui o nā hihia.

Hana ka maʻi kanesa i ka wā e hui pū ai ʻelua mau gene me ka ʻano ʻole, e hana ana i ka mea a nā kauka i kapa ai he fusion gene. ʻO ka hui pū maʻamau loa e pili ana i ka gene EWSR1 a me ka gene FLI1, kahi e hana ai ma kahi o 85% o nā hihia. Hoʻokumu kēia kuhihewa genetic i nā pūnaewele e ulu me ka manaʻo ʻole.

ʻAʻole pili ka sarcoma Ewing i nā kumu ola e like me ka puhipaka, ka ʻai, a i ʻole nā ​​mea i hoʻopili ʻia i ke kaiapuni. He hanana genetic kūlohelohe ia e hiki ke loaʻa i kekahi, ʻoiai ʻoi aku ka nui ma nā kānaka o ka lāhui ʻEulopa.

Ke hoʻomau nei nā mea noiʻi e aʻo i ke kumu o kēia mau loli genetic, akā i kēia manawa, ʻaʻohe ala i ʻike ʻia e pale aku ai iā lākou mai ka hana ʻana.

I ka Wā e ʻIke ai i ke Kauka no ka Sarcoma Ewing?

Pono ʻoe e hoʻokaʻaʻike i kāu kauka inā loaʻa iā ʻoe ka ʻeha iwi a i ʻole hui e mau ʻole e hoʻomaikaʻi me ka hoʻomaha a i ʻole e ʻoi aku ka maikaʻi ma mua o ka manawa. ʻOiai ʻaʻole koʻikoʻi ka hapa nui o nā ʻeha a me nā ʻeha, he mea nui ia e loiloi ʻia nā hōʻailona e mau ana.

E ʻimi koke i ka mālama lapaʻau inā ʻike ʻoe i ka pehu a i ʻole nā ​​ʻāpana i wehewehe ʻole ʻia, ʻoi aku hoʻi inā e ulu ana a i ʻole e hoʻokumu ana i ka ʻoluʻolu ʻole. Pono nō hoʻi ka loiloi koke ʻana i nā haki e hana me nā hōʻeha iki a i ʻole nā ​​hana maʻamau.

Mai kali inā loaʻa iā ʻoe ka wela me ka ʻeha iwi, ka nalowale o ke kaumaha i wehewehe ʻole ʻia, a i ʻole ka luhi nui e hoʻopilikia i nā hana o kēlā me kēia lā. Pono nā hui o kēia mau hōʻailona i ka loiloi ʻoihana.

E hilinaʻi i kou mau manaʻo inā ʻaʻole kūpono kekahi mea. Hiki i ka loiloi mua ke hana i kahi ʻokoʻa nui i nā hopena lapaʻau, a aia kāu hui olakino e kōkua i ka hoʻoholo ʻana i ke kumu o kāu mau hōʻailona.

He aha nā Mea Pōpilikia no ka Sarcoma Ewing?

Hiki i ka hoʻomaopopo ʻana i nā mea pilikia ke kōkua iā ʻoe e hoʻomaopopo i ke kumu o ka hoʻomohala ʻana o kēia maʻi kanesa, ʻoiai he mea nui ia e ʻike ai ʻaʻole ʻo ka loaʻa ʻana o nā mea pilikia ʻaʻole ia he manaʻo e loaʻa maoli i kekahi kanaka ka maʻi kanesa.

ʻO ka makahiki ka mea nui loa, me ka hapa nui o nā hihia e hana ana ma waena o nā makahiki 10 a me 20. Eia naʻe, hiki i ka sarcoma Ewing ke hoʻopili i nā mākua, ʻoi aku hoʻi nā poʻe i ko lākou mau makahiki 20 a me 30, ʻoiai e lilo ana kēia i mea maʻamau ʻole me ka makahiki.

ʻIke ʻia ka lāhui e hoʻopilikia nui i ka pilikia. ʻOi aku ka nui o nā kānaka o ʻEulopa a i ʻole Caucasian e hoʻomohala i ka sarcoma Ewing i hoʻohālikelike ʻia me nā poʻe o ʻApelika, ʻAsia, a i ʻole Hispanic, ʻoiai ʻaʻole maopopo loa nā kumu o kēia.

Hōʻike ka wahine i kahi ʻano iki, me nā kāne e ʻoi aku ka nui o ka hoʻomohala ʻana i kēia maʻi kanesa ma mua o nā wahine. Hiki i ka radiation therapy ma mua no nā maʻi kanesa ʻē aʻe ke hoʻonui iki i ka pilikia, akā he mea maʻamau ʻole kēia.

ʻAʻohe mea pilikia i ʻike ʻia i ka hapa nui o nā kānaka me ka sarcoma Ewing, e hoʻoikaika ana i ka hana kūlohelohe o kēia maʻi kanesa ma mua o nā kumu hiki ke pale ʻia.

He aha nā Pilikia Hiki o ka Sarcoma Ewing?

ʻOiai hiki i ka kūkākūkā ʻana i nā pilikia ke manaʻo weliweli, ke kōkua nei ka hoʻomaopopo ʻana i nā pilikia hiki ke hoʻomākaukau a hana pū me kāu hui lapaʻau e pale a mālama pono iā lākou.

ʻO ka hopohopo koʻikoʻi loa, ʻo ia ka metastasis, kahi e pālahalaha ai nā pūnaewele kanesa i nā ʻāpana ʻē aʻe o ke kino. Hoʻolaha pinepine ka sarcoma Ewing i nā māmā, nā iwi ʻē aʻe, a i ʻole ka iwi iwi. Ma kahi o 20-25% o nā mea maʻi ka hōʻike o ka pālahalaha ʻana i ka wā o ka ʻike ʻana.

Hiki i nā pilikia pili i ka lapaʻau ke komo pū me nā hopena mai ka chemotherapy e like me ka hoʻonui ʻana i ka pilikia o ka maʻi, ka nausea, ka nalowale o ka lauoho, a me nā hopena lōʻihi ma ka hana o ka naʻau a i ʻole ka puʻupaʻa. Hiki i ka radiation therapy ke hoʻokumu i nā loli ʻili a, maʻamau ʻole, nā maʻi kanesa lua ma hope o nā makahiki.

Pili nā pilikia ʻoki i ka wahi o ka ʻōpū akā hiki ke komo pū me nā loli hana lālā, ka pono no nā prosthetics, a i ʻole nā ​​pilikia hana hou. Hiki ke loaʻa nā pilikia ulu i nā keiki inā hoʻopilikia ka lapaʻau i nā papa ulu i nā iwi.

Hiki ke puka mai nā hopena hope ma hope o nā makahiki ma hope o ka lapaʻau, me nā pilikia momona, nā pilikia naʻau, a i ʻole nā ​​maʻi kanesa lua. Eia naʻe, nui nā kānaka e ola ana i nā ola piha, olakino ma hope o ka lapaʻau, a nānā kāu hui lapaʻau i kēia mau mea hiki ke hoʻoponopono koke iā lākou inā loaʻa.

Pehea ka ʻIke ʻana o ka Sarcoma Ewing?

Hoʻokomo ka ʻike ʻana i ka sarcoma Ewing i nā ʻanuʻu e hōʻoia i ka maʻi kanesa a hoʻoholo i kona nui. E hoʻomaka kāu kauka me kahi nānā piha a me ka loiloi ʻana i kāu mau hōʻailona a me ka mōʻaukala lapaʻau.

Kōkua nā hoʻokolohua kiʻi e ʻike i ka ʻōpū a nānā i ka pālahalaha. Hoʻomaka pinepine nā X-rays, a laila nā MRI scans e ʻike i nā kiʻi kikoʻī o ka wahi i pilikia. Kōkua nā CT scans o ka umauma a me nā PET scans i kekahi manawa e hoʻoholo inā ua pālahalaha ka maʻi kanesa i nā wahi ʻē aʻe.

Hāʻawi ka biopsy i ka ʻike maopopo ma o ka wehe ʻana i kahi ʻāpana liʻiliʻi o ka pūnaewele ʻōpū no ka loiloi labo. Nānā nā pathologists i nā loli genetic hiʻohiʻona e hōʻoia i ka sarcoma Ewing, ʻoi aku hoʻi nā hui gene i ʻōlelo ʻia ma mua.

Hiki i nā hoʻokolohua hou ke komo pū me nā biopsies iwi iwi e nānā i nā pūnaewele kanesa i ka iwi iwi, a me nā hoʻokolohua koko e loiloi i ke olakino holoʻokoʻa ma mua o ka hoʻomaka ʻana o ka lapaʻau. Hoʻopau pinepine kēia loiloi piha i kekahi mau pule akā e hōʻoia i kāu hoʻolālā lapaʻau i hana kūikawā ʻia no kāu kūlana.

He aha ka Lapaʻau no ka Sarcoma Ewing?

Hoʻokomo pinepine ka lapaʻau no ka sarcoma Ewing i kahi ala hoʻohui e hoʻohana ana i ka chemotherapy, ka ʻoki, a i kekahi manawa ka radiation therapy. Ua hoʻomaikaʻi nui kēia kaʻina hana nui i nā hopena ma nā makahiki i hala.

Hoʻomaka pinepine ka chemotherapy i ka mua e hoʻemi i ka ʻōpū a mālama i nā pūnaewele kanesa e hiki ke pālahalaha akā ʻaʻole ʻike ʻia. ʻO nā lāʻau maʻamau e komo pū ana me ka vincristine, doxorubicin, cyclophosphamide, ifosfamide, a me ka etoposide, i hāʻawi pinepine ʻia i nā hui ma luna o kekahi mau mahina.

Hoʻomau ka mālama kūloko, e komo pū ana i ka ʻoki e wehe i ka ʻōpū a i ʻole ka radiation therapy inā ʻaʻole hiki ke hana ʻoki. Pili ke koho i nā mea e like me ka wahi o ka ʻōpū, ka nui, a me ke ʻano o kona pane ʻana i ka chemotherapy mua.

Pono ka ʻoki e wehe i ka ʻōpū holoʻokoʻa ʻoiai e mālama ana i ka hana maʻamau e like me ka hiki. I kekahi manawa, pono kēia i nā kaʻina hana limb-sparing, ʻoiai i nā hihia maʻamau ʻole, hiki ke pono ka amputation no ka hopena maikaʻi loa.

Hoʻohana ka radiation therapy i nā kukui kiʻekiʻe e luku i nā pūnaewele kanesa a hiki ke hoʻohana ʻia ma kahi o ka ʻoki a i ʻole ma kahi o ia. Hoʻolālā pinepine ka papahana lapaʻau i kekahi mau mahina a pono i ka hui pū pono ma waena o nā loea like ʻole.

Hoʻomau pinepine ka chemotherapy ma hope o ka mālama kūloko e hoʻopau i nā pūnaewele kanesa i koe. I ka wā o ka lapaʻau, nānā kāu hui i kāu pane a hoʻoponopono i ka hoʻolālā e like me ka pono.

Pehea e Hoʻokele ai i ka Mālama Home i ka wā o ka Lapaʻau Sarcoma Ewing?

Pono ka hoʻokele ʻana i ke ola o kēlā me kēia lā i ka wā o ka lapaʻau i kekahi mau hoʻoponopono, akā hiki ke hoʻomau i nā hana he nui me ka hoʻolālā kūpono a me ke kākoʻo mai kāu hui olakino.

Liʻiliʻi ka pale ʻana i ka maʻi i ka wā o ka chemotherapy i ka wā e nāwaliwali ai kou ʻōnaehana pale. ʻO ia hoʻi ka holoi pinepine ʻana i nā lima, ka pale ʻana i nā poʻe nui i ka wā haʻahaʻa kāu helu koko, a me ka hoʻokaʻaʻike koke ʻana i kāu kauka inā loaʻa iā ʻoe ka wela a i ʻole ke manaʻo maikaʻi ʻole.

Kōkua ka kākoʻo meaʻai e mālama i ka ikaika i ka wā o ka lapaʻau. E nānā i ka ʻai ʻana i ka wā e manaʻo maikaʻi ai ʻoe, e noho hydrated, a e hana pū me kahi meaʻai inā lilo nā loli nausea a i ʻole ka makemake i ka meaʻai i ka pilikia. Hana pinepine nā meaʻai liʻiliʻi, pinepine ma mua o nā mea nui.

Hoʻokomo ka hoʻokele ikehu i ka kaulike o ka hoʻomaha me ka hana mālie e like me ka ʻae ʻia. Hiki i ka hoʻoikaika māmā e like me ka hele wāwae ke kōkua i ka mālama ʻana i ka ikaika a me ke ʻano, akā e hoʻolohe i kou kino a e hoʻomaha i ka wā e pono ai.

He mea nui nō hoʻi ke kākoʻo manaʻo. E noʻonoʻo e hoʻopili me nā hui kākoʻo, nā kākāʻōlelo, a i ʻole nā ​​ʻohana ʻē aʻe e hoʻomaopopo i kāu mea e hele nei. Hāʻawi pinepine nā haukapila i kēia mau kumuwaiwai ma ke ʻano he ʻāpana o ka mālama piha.

Pehea ʻoe e Hoʻomākaukau ai no kāu mau Hālāwai Kauka?

Ke hoʻomākaukau nei no nā hālāwai e kōkua iā ʻoe e hana i ka hapa nui o kou manawa me ka hui lapaʻau a e hōʻoia i ka pane piha ʻana i kāu mau hopohopo.

E kākau i kāu mau nīnau ma mua o kēlā me kēia kipa, e hoʻomaka ana me nā mea nui loa. E komo pū me nā hopohopo e pili ana i nā hōʻailona, ​​nā hopena lapaʻau, nā palena hana, a i ʻole kekahi mea e hopohopo nei iā ʻoe ma waena o nā hālāwai.

E mālama i kahi diary hōʻailona e hoʻomaopopo ana i nā pae ʻeha, nā loli ikehu, ka makemake, a i ʻole nā ​​hōʻailona hou. Kōkua kēia ʻike i kāu kauka e nānā i kāu pane ʻana i ka lapaʻau a hoʻoponopono i ka mālama e like me ka pono.

E lawe mai i kahi mea kākoʻo i nā hālāwai nui i ka hiki. Hiki iā lākou ke kōkua iā ʻoe e hoʻomanaʻo i ka ʻike i kūkākūkā ʻia a hāʻawi i ke kākoʻo manaʻo i ka wā o nā kamaʻilio paʻakikī.

E hoʻonohonoho i kāu ʻike lapaʻau, me nā lāʻau lapaʻau i kēia manawa, nā kāleka ʻinikua, a me nā hopena hoʻokolohua mai nā kauka ʻē aʻe. Ke loaʻa nā mea a pau i ka loaʻa, e hoʻomaʻemaʻe i kāu mālama.

Mai kānalua e noi i ka wehewehe inā ʻaʻole ʻoe i hoʻomaopopo i kekahi mea. Makemake kāu hui lapaʻau e manaʻo ʻoe i ka ʻike a me ka ʻoluʻolu me kāu hoʻolālā lapaʻau.

He aha ka lawe nui e pili ana i ka Sarcoma Ewing?

ʻO ka sarcoma Ewing kahi maʻi kanesa koʻikoʻi akā hiki ke mālama ʻia e pono ai ka mālama kūikawā a me kahi ala lapaʻau piha. ʻOiai hiki i ka loaʻa ʻana o kēia ʻike ke manaʻo nui, ua hoʻomaikaʻi nui nā holomua i ka lapaʻau i nā hopena nui ma nā makahiki i hala.

Pili ka holomua nui i ka ʻike mua a me ka loaʻa ʻana o ka mālama mai nā hui akamai e kamaʻāina i kēia maʻi kanesa maʻamau ʻole. Hāʻawi ka hui pū ʻana o ka chemotherapy, ka ʻoki a i ʻole ka radiation, a me ka nānā mau ʻana i nā mea maʻi he nui i nā manawa maikaʻi no ka hoʻōla a me ka hoʻi ʻana i nā hana maʻamau.

E hoʻomanaʻo ʻaʻole ʻoe wale nō i kēia huakaʻi. ʻO kāu hui lapaʻau, ʻohana, hoaaloha, a me nā hui kākoʻo mea maʻi nā kumuwaiwai a pau e loaʻa e kōkua iā ʻoe e hoʻokele i ka lapaʻau a me ka hoʻōla me ka holomua.

Nā Nīnau Pinepine e pili ana i ka Sarcoma Ewing

He mea hoʻoilina anei ka sarcoma Ewing?

ʻAʻole, ʻaʻole hoʻoilina ʻia ka sarcoma Ewing mai nā mākua. Hana kūlohelohe nā loli genetic e hoʻokumu i kēia maʻi kanesa i nā pūnaewele pilikino, ʻaʻole i nā gene i hoʻoili ʻia ma o nā ʻohana. ʻOi aku ka emi o 5% o nā hihia i kekahi mōʻaukala ʻohana o ka maʻi.

He aha ka nui o ka ola no ka sarcoma Ewing?

Pili nā nui o ka ola i kekahi mau mea e komo pū ana i ke kahua i ka wā o ka ʻike ʻana a me ka pane ʻana i ka lapaʻau. No ka maʻi kūloko, ma kahi o 70-80% nā nui o ka ola ʻelima makahiki. Ke pālahalaha ka maʻi kanesa i ka wā o ka ʻike ʻana, emi nā nui, akā nui nā mea maʻi e loaʻa ana i ka remission lōʻihi me nā lapaʻau i kēia manawa.

Hiki ke pale ʻia ka sarcoma Ewing?

I kēia manawa, ʻaʻohe ala i ʻike ʻia e pale aku ai i ka sarcoma Ewing ʻoiai ʻo ia ka hopena o nā loli genetic kūlohelohe e hana kūlohelohe. ʻAʻole pili ia i nā kumu ola, nā mea i hoʻopili ʻia i ke kaiapuni, a i ʻole nā ​​kūlana genetic hoʻoilina e hiki ke hoʻololi ʻia, ʻokoʻa i kekahi mau maʻi kanesa.

Pehea ka lōʻihi o ka lapaʻau maʻamau?

Hoʻolālā pinepine ka lapaʻau i 9-12 mau mahina a komo pū me nā papa o ka chemotherapy me ka ʻoki a i ʻole ka radiation therapy. Hoʻololi ka manawa pololei ma muli o ka pane pilikino i ka lapaʻau a me nā protocol kūikawā i hoʻohana ʻia e kāu hui lapaʻau.

E hiki iaʻu ke hoʻi i nā hana maʻamau ma hope o ka lapaʻau?

Nui nā kānaka e hoʻi i ko lākou mau hana ma mua ma hope o ka pau ʻana o ka lapaʻau, ʻoiai pili kēia i nā mea e like me ka wahi o ka ʻōpū a me ke ʻano o ka ʻoki e pono ai. E hana pū kāu hui lapaʻau me ʻoe i ka wā o ka lapaʻau e hoʻomaikaʻi i kāu hopena hana a kōkua iā ʻoe e hoʻokō i kāu mau pahuhopu hana.