He nui ka poʻe o kākou e makaʻu nei i ka huaʻōlelo "maʻi kanesa." He mea maʻamau loa ia. Akā i kēia lā, no ka mea ua holomua nui ka ʻepekema lapaʻau, ua hiki ke ola maʻamau me kekahi mau ʻano maʻi kanesa. I kēia lā, e kamaʻilio mākou e pili ana i kekahi ʻano maʻi kanesa koko. ʻO ia hoʻi ʻo CML, ʻo ia hoʻi ke Chronic Myeloid Leukemia. Ua lohe paha ʻoe i kēia inoa ma hope o kahi hoʻāʻo koko maʻamau. No laila, e kamaʻilio kākou e pili ana i nā kikoʻī me ka makaʻu ʻole.
ʻAe, he aha kēia CML?
I ka ʻōlelo maʻalahi, he maʻi ʻaʻai koko ko CML. Hoʻomaka ia ma ka iwi iwi i loko o ko kākou mau iwi. Ua like ka iwi iwi me kahi hale hana e hana ana i nā ʻano o nā cell e pono ai ko kākou kino i kapa ʻia he mau cell koko ʻulaʻula, nā cell koko keʻokeʻo, a me nā platelets. I ka CML, hewa kekahi mea me nā cell kumu myeloid i loko o kēia mau cell iwi iwi, a hoʻomaka lākou e māhele a hoʻonui me ke kāohi ʻole.
Ua kapa ʻia hoʻi kēia ʻo 'chronic myelogenous leukemia' a i ʻole 'chronic granulocytic leukemia'.
Akā ʻo ka nūhou koʻikoʻi a maikaʻi loa ma ʻaneʻi, me nā lāʻau lapaʻau holomua o kēia lā, hiki i ka hapa nui o ka poʻe me CML ke ola i kahi ola maʻamau . ʻO ke ʻano kēia, ma kahi o ka lilo ʻana i maʻi make, ua lilo ia i maʻi mau loa e hiki ke kaohi ʻia me ka lāʻau lapaʻau.
Pehea ka wikiwiki o ka holomua ʻana o kēia CML?
ʻO ke ʻano o ka huaʻōlelo "chronic" ʻo ia hoʻi "lōʻihi." A pēlā ke ʻano o kēia maʻi. He maʻi maʻamau loa ʻo CML. I kekahi manawa hiki ke noho no nā makahiki me ka ʻole o nā hōʻailona. Ua ʻike ka poʻe he nui ua loaʻa iā lākou ma ka ulia pōpilikia, i ka wā e hōʻike ai kahi hoʻāʻo koko i hana ʻia no kekahi kumu ʻē aʻe i kahi ʻano ʻē i ka helu o ko lākou mau cell koko.
Akā inā ʻaʻole mālama ʻia, hiki i kēia ke lilo i mea hoʻoweliweli i ke ola i loko o ʻekolu a ʻehā mau makahiki. No laila, he mea nui loa ka ʻike ʻana a me ka hoʻomaka ʻana i ka lāʻau i ka wā mua.
He aha nā hōʻailona e hiki i kekahi me CML ke ʻike?
I ka manawa pinepine, ʻaʻohe paha he mau hōʻailona nui i nā pae mua. Eia nō naʻe, aia kekahi mau hōʻailona maʻamau e ʻike ʻia i ka hala ʻana o ka manawa. ʻO kēia nā mea a mākou e manaʻo ai he mea maʻamau a hoʻowahāwahā ʻia.
| Hōʻailona | He wehewehe maʻalahi |
|---|---|
| Luhi mau a me ka nāwaliwali | Luhi mau ke kino, ʻoiai inā hiamoe maikaʻi ʻoe a ʻaʻole ʻoe e hana i kekahi hana. |
| Ka paʻakikī o ka hanu ʻana (Dyspnea) | Ka hāʻule ʻana i ka wā e hele ana i kahi mamao pōkole a i ʻole e piʻi ana i ke alapiʻi. |
| Kuni me ke kumu ʻole | Wela ka manaʻo me ka ʻole o kekahi maʻi ʻē aʻe. |
| Nā hou o ka pō | E hou ana i ka pō a hiki i ke kiko e pulu ai nā moena moe, ʻoiai ke anu nei ka lumi. |
| ʻO ka pohō kaumaha me ke kumu ʻole | Ka emi koke ʻana o ke kaumaha me ka ʻole o ka ʻai ʻana a i ʻole ka hoʻoikaika kino ʻana. |
| ʻO ka pehu ʻana a i ʻole ka ʻeha ʻole ma ka ʻaoʻao hema o luna o ka ʻōpū | ʻO kēia ma muli o ka pehu ʻana o ka spleen, aia ma kēia ʻāpana o ka ʻōpū. |
| Manaʻo piha ʻoiai ma hope o ka ʻai iki ʻana | Hiki i ka ʻōpū pehu ke kaomi i ka ʻōpū, e hoʻopiha iā ʻoe ma hope o ka ʻai ʻana i kahi liʻiliʻi. |
No ke aha e ulu ai ʻo CML? He mea hoʻoilina anei ia?
He nīnau kēia a ka poʻe he nui. ʻO ka mea nui e hoʻomaopopo ai ma ʻaneʻi, ʻaʻole he maʻi hoʻoilina ʻo CML. ʻO ke ʻano kēia, ʻaʻole loaʻa i nā keiki ia mea no ka mea ua loaʻa i ko lākou mau mākua. A ʻaʻole ia he mea i hoʻoilina ʻia.
Hana ʻia ka CML i ka wā e hana ʻia ai kahi loli (mutation) i loko o nā genes o kā mākou mau cell, ʻo ia hoʻi nā cell kumu i loko o ka iwi iwi, i ko mākou wā e ola ana. Ua kapa ʻia kēia he 'acquired mutation'.
ʻAe, e nānā kākou pehea e hana ai kēia. I ka ʻōlelo maʻalahi, penei:
1. Loaʻa kahi loli i loko o nā genes o kā mākou mau cell kumu, a ua hoʻokumu ʻia kahi gene hou i hoʻohui ʻia i kapa ʻia ʻo `BCR-ABL`.
2. This new gene gives new instructions to stem cells to make an unusual form of an enzyme called `tyrosine kinase`.
3. E noʻonoʻo i kēia mau enzymes e like me nā kuapo "on" a me "off" ma ke kukui. ʻO kēia nā mea e kaohi ai i ka mahele ʻana o nā cell.
4. Akā, ʻaʻohe kuapo "off" o kēlā enzyme 'tyrosine kinase' i hana ʻia ma ke ʻano ʻē. Aia mau ia "on".
5. No ka mea, ʻaʻohe kuapo "off", hoʻomau nā hunaola kumu i loko o ka iwi iwi i ka loaʻa ʻana o nā hōʻailona e māhelehele, hoʻokaʻawale, a hoʻonui me ke kāohi ʻole.
6. ʻO ka hopena, hoʻomaka ka nui o nā hunaola koko keʻokeʻo ʻōpiopio (i kapa ʻia hoʻi he 'blasts').
7. I ka hala ʻana o ka manawa, hoʻopiha kēia mau ʻāpana ʻē i ka iwi iwi. A laila nalowale ka hiki i ka iwi iwi ke hana i nā hunaola koko ʻulaʻula olakino, nā hunaola koko keʻokeʻo, a me nā platelets. ʻO ka hopena, hoʻomaka nā hōʻailona i ʻōlelo ʻia ma luna nei e ʻike ʻia.
Nā pilikia a me nā pilikia e hiki mai ana o kēia
Nā kumu pilikia
ʻO ke kumu pilikia wale nō i ʻike ʻia no ka hoʻomohala ʻana o CML ʻo ia ka ʻike ʻia ʻana i nā pae kiʻekiʻe loa o ka radiation . Eia nō naʻe, he mea kakaikahi loa kēia. ʻO nā pae o ka radiation a mākou e ʻike ai i ke ola maʻamau (no ka laʻana, mai ka loaʻa ʻana o kahi X-ray) ʻaʻole ia ke kumu.
Nā pilikia hiki ke loaʻa
Hiki i ka CML ke hana i ʻelua mau pilikia nui:
- Anemia: Ka emi ʻana o ka hana ʻana o nā hunaola koko ʻulaʻula olakino, kahi e hōʻemi ai i ka nui o ka oxygen e pono ai ke kino, e hoʻoulu ai i ka luhi a me ka maeʻele.
- Splenomegaly: Hōʻiliʻili ka nui o nā hunaola koko kūpono ʻole i loko o ka spleen, e hoʻoulu ai i ka pehu. Hiki i kēia ke hoʻoulu i ka ʻeha o ka ʻōpū a me ka manaʻo o ka piha ʻana ma hope o ka ʻai ʻana i kahi liʻiliʻi.
Eia kekahi, ua hōʻike kekahi mau haʻawina e hiki i ka poʻe me CML ke loaʻa i kahi piʻi iki o ka pilikia o ka hoʻomohala ʻana i nā ʻano maʻi ʻē aʻe (nā maʻi ʻaʻai lua).
Pehea e ʻike ai nā kauka i ka CML?
Hiki i kāu kauka ke kānalua i kēia me kahi hoʻāʻo koko maʻalahi. Eia nō naʻe, no ka hōʻoia ʻana i ka maʻi, pono nā hoʻokolohua kūikawā e nānā i nā loli i loko o nā genes.
| Hoʻāʻo | He aha kāu e ʻike ai ma kēia? |
|---|---|
| Helu Koko Piha (CBC) | Nānā lākou e ʻike inā kiʻekiʻe loa ka helu o nā hunaola koko keʻokeʻo a i ʻole haʻahaʻa loa ka helu o nā hunaola koko ʻulaʻula. |
| Ka Hoʻopaʻa ʻana/Biopsy o ka Iwi Moa | Lawe ʻia kahi hāpana liʻiliʻi o ka iwi iwi a hoʻāʻo ʻia e ʻike inā loaʻa ka loli ʻana o ka genetic i kapa ʻia ʻo 'BCR-ABL'. |
| CT Scan (Computered Tomography Scan) | E nānā inā ua pālahalaha ke kanesa i nā ʻāpana ʻē aʻe o ke kino (e.g. spleen, ate). |
| ʻO ke kiʻi ʻana o ka ultrasound | Hoʻohana ʻia kēia hoʻāʻo e ʻike inā ʻoi aku ka nui o ka spleen ma mua o ka maʻamau. |
He aha nā pae o CML?
ʻAʻole e like me nā maʻi kanesa ʻē aʻe, ʻaʻole i hoʻokaʻawale ʻia ʻo CML ma ke ʻano he "pae 1, 2, 3, 4." Akā, ua hoʻokaʻawale ʻia ʻo ia ma ke ʻano he "phases." Hoʻoholo ʻia kēia e ka helu o nā hunaola koko keʻokeʻo ʻōpiopio ('blasts') i loko o ke koko a me ka iwi iwi.
- Ka Wā Mau: ʻO kēia ke kahua mua loa. ʻAʻole i emi iho ma mua o 10% o nā pūnaewele `blasts` i loko o ke koko a me ka iwi iwi. Aia ma kēia kahua he 80-90% o ka poʻe i ʻike ʻia me CML. Loaʻa paha i kēia poʻe nā hōʻailona a ʻaʻole paha.
- Ka Pae Hoʻolalelale: I kēia pae, piʻi ka helu o nā pūnaewele `blasts` i waena o 10% a me 19%. Hoʻomaka ka ʻike nui ʻia o nā hōʻailona.
- Ka Wā Pahū a i ʻole ka pilikia pahū: ʻO kēia ka wā koʻikoʻi loa a hoʻoweliweli i ke ola. Hoʻonui ʻia ka helu o nā hunaola `pahū` ma 20% a ʻoi aku paha. ʻO nā hōʻailona e like me ka luhi nui, ke kuni, a me ka pohō kaumaha e lilo i mea koʻikoʻi.
- CML Kūʻē: ʻO kēia ka inoa i hāʻawi ʻia i ka CML i pane ʻole i ka lāʻau lapaʻau a i ʻole e hoʻi hou mai ma hope o ka lāʻau lapaʻau.
He aha nā lāʻau lapaʻau no CML?
ʻO kēia kahi e komo mai ai ka nūhou maikaʻi e pili ana iā CML. I kēia lā, aia nā lāʻau lapaʻau kūpono loa no kēia maʻi.
ʻO ka lāʻau lapaʻau nui he papa o nā lāʻau i kapa ʻia ʻo Tyrosine Kinase Inhibitors (TKIs) . He mau lāʻau lapaʻau kēia i lawe ʻia ma ke ʻano he mau pila.
E hoʻomanaʻo i ka enzyme ʻokoʻa a mākou i kamaʻilio ai ma mua e hana ana e like me ke kuapo "on"? ʻO ia ka mea a kēia mau lāʻau lapaʻau e kuhikuhi ai. ʻO ka mea a nā TKI e hana ai, ʻo ia ke kāohi ʻana i kēlā enzyme ʻaʻohe ona kuapo "off" mai ka hana ʻana. Ke ālai nei lākou iā ia. A laila, ʻaʻole i loaʻa i kēlā mau pūnaewele CML e māhele ana me ka ʻole o ka mana ka hōʻailona e māhele, a ma hope o kekahi manawa e make ana kēlā mau pūnaewele.
Ua hana kēia mau TKI i kahi ʻokoʻa nui i ke ola o nā poʻe maʻi CML. Ma mua o ka hiki ʻana mai o kēia mau lāʻau lapaʻau, aia wale nō ma kahi o 20% o ka poʻe i ʻike ʻia me CML i ola no 5 mau makahiki. Akā i kēia lā, me nā TKI, ua piʻi aʻe kēlā pakeneka i ʻoi aku ma mua o 90%.
Lawe pinepine ʻia kēia mau lāʻau lapaʻau no ke ola. ʻO kekahi o nā ʻano TKI i hoʻohana pinepine ʻia:
- ʻImatinib
- ʻO Dasatinib
- ʻO Nilotinib
- ʻO Bosutinib
- ʻO Ponatinib
Loaʻa i nā TKI nā hopena ʻaoʻao?
ʻAe, e like me nā lāʻau lapaʻau āpau, hiki ke loaʻa nā hopena ʻaoʻao. Akā hiki ke mālama ʻia. ʻO nā mea maʻamau:
- ʻeha ka ʻōpū
- Luhi
- Ka maʻi pākī
- ʻŌwili ʻiʻo
- ʻEdema
- I kekahi manawa, hiki ke hana ʻia nā mea e like me ka hōʻino ʻana o ke ake a me ka helu haʻahaʻa o nā cell koko.
E kamaʻilio kāu kauka me ʻoe e pili ana i kēia mau hopena ʻaoʻao a kōkua iā ʻoe e hoʻokele iā lākou.
Hiki ke ho'ōla loa ʻia ʻo CML?
I kēia manawa, ʻo ke ala wale nō e "ho'ōla" ai i ka CML me kahi hoʻoili cell kumu allogeneic . Pili kēia i ka hoʻoili ʻana i nā cell kumu mai kahi kanaka olakino i loko o ka mea maʻi. Eia nō naʻe, he lāʻau paʻakikī loa kēia a he pilikia hoʻi. No laila, hana pinepine ʻia ia no nā mea maʻi i pane ʻole i nā TKI.
He aha ke ʻano o ka noho ʻana me CML a he aha ka hopena?
Ke hoʻomaha ʻia ʻo CML me ka lāʻau lapaʻau, ʻaʻohe ou hōʻailona hou a ʻaʻohe hōʻailona o ka maʻi e ʻike ʻia ma nā hoʻokolohua. ʻO ia hoʻi, hiki iā ʻoe ke ola i kahi ola maʻamau. Akā, pono ʻoe e hoʻomau i ka lawe ʻana i ka lāʻau lapaʻau e kāohi i ka maʻi. Pono nō hoʻi ʻoe e ʻike pinepine i kāu kauka no nā hoʻokolohua koko e nānā i ka maikaʻi o kāu lāʻau lapaʻau.
Hoʻokuʻu ʻole ʻia me ka lāʻau lapaʻau (TFR)
ʻO kēia ka hoʻomohala hou loa a me ka mea hoʻohiki nui loa i ka mālama ʻana iā CML. ʻO ke ʻano kēia, hiki i kekahi mau maʻi i lawe i nā TKI no kekahi manawa a ua kāohi maikaʻi ʻia ko lākou maʻi ke hoʻōki i ka lawe ʻana i ka lāʻau lapaʻau ma lalo o ka nānā ʻana a kā lākou kauka. ʻOiai ma hope o ka hoʻōki ʻana i ka lāʻau lapaʻau, ʻaʻole i hoʻi mai ka maʻi. Akā, ʻaʻole hiki kēia i nā mea āpau. Pono ʻoe e hoʻokō i kekahi mau hōʻoia no ia mea.
ʻO ka mea nui loa, mai ho'ōki i ka lawe ʻana i kāu lāʻau lapaʻau no kekahi kumu me ke kamaʻilio ʻole ʻana me kāu kauka. Hiki i kēlā ke lilo i mea weliweli loa.
Nā nīnau koʻikoʻi e nīnau aku i kāu kauka
Ke ʻike ʻoe he CML kou, he mea maʻamau ka loaʻa ʻana o nā nīnau he nui i loko o kou manaʻo. Mai makaʻu, e nīnau i kāu kauka e pili ana i kēia mau mea.
- He aha ke kahua o CML iaʻu?
- He aha nā koho lapaʻau e loaʻa iaʻu?
- Pehea koʻu manaʻo i ka wā o ka mālama ʻana? He aha nā hopena ʻaoʻao?
- Hiki iaʻu ke hoʻomau i kaʻu hana ʻoiai e loaʻa ana ka lāʻau lapaʻau?
- ʻEhia pinepine e pono ai iaʻu e hana i nā hoʻāʻo koko e ʻike ai inā ua holomua ka lāʻau lapaʻau?
- He aha nā manawa kūpono e hoʻōla ʻia ai koʻu maʻi?
- He kūpono anei ka hoʻoili ʻana o nā pūnaewele kumu no koʻu maʻi?
- ʻO wai kaʻu e kamaʻilio ai e pili ana i ka hoʻokele ʻana i nā kumukūʻai lapaʻau?
Leka Lawe-Home
- He maʻi ʻaʻai koko lohi ka CML. ʻAʻole ia he maʻi hoʻoilina.
- He kūpono loa nā lāʻau lapaʻau i hoʻolālā ʻia i kēia lā, i kapa ʻia ʻo TKI, e ʻae ana i nā poʻe he nui me CML e ola maʻamau a lōʻihi.
- Ke ʻike ʻia ʻoe ua loaʻa iā ʻoe ka maʻi, mai hopohopo a e hahai pololei i nā ʻōlelo a kāu kauka.
- He mea nui e lawe i ka lāʻau lapaʻau i ka manawa kūpono a hele i nā keʻena lapaʻau no ka hoʻokolohua kino i ka manawa kūpono.
- Mai ho'ōki a hoʻololi paha i ka lāʻau lapaʻau me ka ʻae ʻole ʻia e kāu kauka.
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