He tokomaha o tātou e mataku ana ki te kupu "matepukupuku." He mea tino noa tēnei. Engari i ēnei rā, nā te nui o te whanaketanga o te pūtaiao hauora, kua taea te noho noa me ētahi momo matepukupuku. I tēnei rā, ka kōrero tātou mō tētahi momo matepukupuku toto. Ko te CML, ko tōna tikanga ko te Chronic Myeloid Leukemia. Kua rongo pea koe i tēnei ingoa i muri i te whakamātautau toto noa. Nō reira, me kōrero taipitopito tātou mō tēnei mea, kaua e mataku.
Āe, he aha tēnei CML?
He kupu ngāwari noa iho, he mate pukupuku te CML o ō tātou toto. Ka tīmata i roto i te hinu wheua i roto i ō tātou wheua. He rite te hinu wheua ki tētahi wheketere e hanga ana i ngā momo pūtau e hiahiatia ana e tō tātou tinana e kiia nei ko ngā toto whero, ngā toto mā, me ngā pereti toto. I roto i te CML, ka hē te mahi a ngā pūtau take myeloid i roto i ēnei pūtau hinu wheua, ā, ka tīmata rātou ki te wehewehe me te whakanui me te kore e taea te whakahaere.
Ka kiia hoki tēnei ko te 'chronic myelogenous leukemia' ko te 'chronic granulocytic leukemia' rānei.
Engari ko te mea nui, ko te mea pai rawa atu hoki, ko ngā maimoatanga matatau o ēnei rā, ka taea e te nuinga o te hunga whai CML te ora i te roanga o te oranga noa . Ko te tikanga, ehara i te mate whakamate, engari kua noho hei mate mau tonu ka taea te whakahaere mā te rongoā.
Kia pēhea te tere o te ahu whakamua o tēnei CML?
Ko te tikanga o te kupu "chronic" he "roa." Koinei te āhua o tēnei mate. He mate tino noa te CML. I ētahi wā ka roa pea te noho, kāore he tohu. He maha ngā tāngata ka kitea he mate tūpono kei a rātou, ina kitea he rerekētanga o te maha o ngā pūtau toto i roto i te whakamātautau toto i mahia mō tētahi atu take.
Engari ki te kore e rongoatia, ka noho hei mate morearea tēnei i roto i ngā tau e toru ki te whā. Nō reira, he mea tino nui kia tautuhia te mate me te tīmata wawe i te maimoatanga.
He aha ngā tohu ka pā ki te tangata whai CML?
He maha ngā wā, kāore pea he tohu nui e kitea i ngā wāhanga tōmua. Heoi, tera ētahi tohu noa ka puta i roto i te wā. He maha ngā wā ka whakaarohia ēnei he mea noa, ā, ka warewarehia.
| Tohu | He whakamārama māmā |
|---|---|
| Te ngenge me te ngoikore tonu | Ka ngenge tonu, ahakoa te moe pai, ā, kāore koe e mahi i tetahi mea. |
| Te uaua ki te manawa (Dyspnea) | Te hinga i a koe e hikoi ana i te tawhiti poto, e piki arawhata ana rānei. |
| Te kirika, kāore he take | Te werawera, kāore he mate kē atu. |
| Te werawera o te pō | Te werawera i te pō tae noa ki te mākū o ngā whāriki, ahakoa te makariri o te rūma. |
| Te ngaronga taumaha mō te kore take | Te hekenga ohorere o te taumaha me te kore e kai i tētahi kai tōtika, e whakakori tinana rānei. |
| Te pupuhi, te mamae rānei i te taha maui o runga o te puku | Nā te pupuhi o te whēkau, kei tēnei wāhanga o te puku tēnei. |
| Kei te kī tonu ahakoa i muri i te kai iti | Ka taea e te ate puku te pēhi i te puku, ka kī tonu koe ahakoa he iti te kai. |
He aha te take e puta ai te CML? He mea tuku iho?
He pātai tēnei kei te nuinga o te tangata. Ko te mea nui kia mārama ki konei, ehara te CML i te mate tuku iho . Ko te tikanga, kāore ngā tamariki e pāngia e tēnei mate nā te mea kua pāngia ō rātou mātua. Ā, ehara hoki i te mea tuku iho.
Ka puta te CML ina puta he panoni (whakarerekētanga) i roto i ngā ira o ō tātou pūtau, arā, ngā pūtau take i roto i te hinu wheua, i roto i tō tātou oranga. Ka kiia tēnei he 'whakarerekētanga kua riro'.
Āe, me titiro tātou me pēhea te mahi. He rite tonu ki tēnei:
1. Ka puta he panoni ki ngā ira o ō tātou pūtau take, ā, ka puta he ira hou kua tāpirihia, ko te `BCR-ABL` te ingoa.
2. This new gene gives new instructions to stem cells to make an unusual form of an enzyme called `tyrosine kinase`.
3. Whakaarohia ēnei whākōkī he rite ki ngā pana "kā" me te "weto" i runga i te rama. Koinei ngā mea e whakahaere ana i te wehenga pūtau.
4. Engari kāore he pātene "whakaweto" o taua whākōkī 'tyrosine kinase' i hangaia i tētahi āhua rerekē. Kei te "kā" tonu.
5. Nā te mea kāore he pana "whakaweto", ka whiwhi tonu ngā pūtau take i roto i te hinu wheua i ngā tohu kia wehewehe, kia wehewehe, kia whakanuia hoki, me te kore e taea te whakahaere.
6. Nō reira, ka tīmata te hanga o te tini o ngā pūtau toto mā kāore anō kia pakari (e kiia ana ko ngā 'pūpū').
7. I roto i te wā, ka whakakīia te hinu wheua e ēnei pūtau rerekē. Kātahi ka ngaro te kaha o te hinu wheua ki te hanga i ngā toto whero hauora, ngā toto mā, me ngā pereti toto. Nō reira, ka tīmata te puta mai o ngā tohu kua whakahuatia i runga ake nei.
Ngā mōrearea me ngā raruraru pea o tēnei
Ngā āhuatanga mōrearea
Ko te tūponotanga anake e mōhiotia ana mō te whakawhanaketanga o te CML ko te pānga ki ngā taumata teitei rawa o te irahiko . Heoi, he tino onge tēnei. Ko ngā taumata o te irahiko e tūtakihia ana e tātou i te ao noa (hei tauira, mai i te tango hihi-X) ehara i te mea e hua ai.
Ngā raruraru pea
E rua ngā raruraru matua ka pā mai i te CML:
- Te mate kore toto: He hekenga o te hanga o ngā toto whero hauora, ka whakaiti i te nui o te hāora e hiahiatia ana e te tinana, ka puta te ngenge me te kiri mā.
- Te whēkau toto: He nui ngā pūtau toto rerekē e kohia ana i roto i te whēkau toto, ka pupuhi. Ka pāngia pea te puku e te mamae me te kī tonu ahakoa he iti noa te kai.
Hei tāpiritanga, kua whakaatuhia e ētahi rangahau he paku piki ake te mōrearea o te hunga whai CML ki te whakawhanake i ētahi atu momo mate pukupuku (mate pukupuku tuarua).
Me pēhea te tautuhi a ngā tākuta i te CML?
Tērā pea ka whakapae tō tākuta i tēnei mā te whakamātautau toto noa iho. Heoi, hei whakaū i te mate, me whai whakamātautau motuhake hei rapu i ngā huringa o ngā ira.
| Whakamātautau | He aha tāu e kite nei i roto i tēnei? |
|---|---|
| Tatau Toto Katoa (CBC) | Ka tirohia e rātou mēnā he nui rawa te maha o ngā pūtau toto mā, he iti rawa rānei te maha o ngā pūtau toto whero. |
| Te Momi/Te Kohikohi i te Huka Wheua | Ka tangohia he tauira iti o te hinu wheua, ka whakamātautauhia hei tirotiro mēnā kei reira te whakarerekētanga ira e kiia nei ko te `BCR-ABL`. |
| Matawai CT (Matawai Tomography Rorohiko) | Tirohia mēnā kua horapa te mate pukupuku ki ētahi atu wāhanga o te tinana (hei tauira, te whēkau, te ate). |
| Matawai Ultrasound | Ka whakamahia tēnei whakamātautau hei tirotiro mēnā he nui ake te ate i te mea noa. |
He aha ngā wāhanga o te CML?
Kāore i rite ki ētahi atu mate pukupuku, kāore te CML i te whakarōpūtia hei "wāhanga 1, 2, 3, 4." Engari, ka whakarōpūtia hei "wāhanga." Ka whakatauhia tēnei e te maha o ngā pūtau toto ma kāore anō kia pakari ('pūpū') i roto i te toto me te hinu wheua.
- Wāhanga Mau tonu: Koinei te wāhanga tōmua. He iti iho i te 10% o ngā pūtau 'blasts' kei roto i te toto me te hinu wheua. 80-90% o te hunga kua tāpaetia he CML kei roto i tēnei wāhanga. Tērā pea he tohu kei ēnei tāngata, kāore rānei.
- Wāhanga Whakateretere: I tēnei wāhanga, ka piki te maha o ngā pūtau 'pahū' ki waenga i te 10% me te 19%. Ka tīmata te kitea haere o ngā tohu.
- Wāhanga Pahū, te Āhuatanga Pāhū rānei: Koinei te wāhanga tino kino, tino morearea hoki. Ka piki ake te maha o ngā pūtau 'pahū' mā te 20% neke atu rānei. Ka kaha haere ngā tohu pēnei i te ngenge nui, te kirika, me te whakaheke taumaha.
- CML Ātete: Koinei te ingoa i hoatu ki te CML kāore e aro ki te maimoatanga, ka hoki mai anō rānei i muri i te maimoatanga.
He aha ngā maimoatanga mō te CML?
Koinei te wāhi e puta mai ai ngā rongo pai mō te CML. I ēnei rā, he tino whai hua ngā maimoatanga mō tēnei mate.
Ko te maimoatanga matua he momo rongoā e kiia nei ko ngā Tyrosine Kinase Inhibitors (TKI) . He rongoā ēnei e tangohia ana hei pire.
Kei te mahara koe ki te whākōkī rerekē i kōrerohia e tātou i mua ake nei e mahi ana pērā i te pana "whakakā"? Koinei te mea e arohia ana e ēnei rongoā. Ko tā ngā TKI he aukati i te mahi a taua whākōkī kāore he pana "whakakā". Ka āraia e rātou. Kātahi ka kore e whiwhi tohu ngā pūtau CML e wehewehe ana, ā, i muri i tētahi wā ka mate aua pūtau.
He nui te rerekētanga kua pā ki te oranga o ngā tūroro CML nā ēnei rongoā TKI. I mua i te taenga mai o ēnei rongoā, tata ki te 20% noa iho o te hunga i kitea he CML i ora mō ngā tau e 5. Engari i ēnei rā, me ngā TKI, kua piki ake taua ōrau ki te neke atu i te 90%.
He maha ngā wā ka tangohia ēnei rongoā mō te wā katoa. Ko ētahi o ngā momo TKI e whakamahia whānuitia ana ko:
- Imatinib
- Dasatinib
- Nilotinib
- Bosutinib
- Ponatinib
He pānga taha rānei ō ngā TKI?
Ae, pērā i ngā rongoā katoa, tera pea ka pā mai ngā pānga taha. Engari i te nuinga o te wā ka taea te whakahaere. Ko ngā mea tino kitea ko:
- Mamae puku
- Ngenge
- Korere
- Te hurihuri o te uaua
- Pupuhi
- I ētahi wā, ka puta pea ngā āhuatanga pēnei i te kino o te ate me te iti o te maha o ngā pūtau toto.
Ma tō tākuta koe e kōrero mō ēnei pānga taha, ā, maana koe e āwhina ki te whakahaere i aua pānga.
Ka taea te rongoā katoa i te CML?
I tēnei wā, ko te huarahi anake hei "whakaora" i te CML ko te whakawhitinga pūtau take allogeneic . Ko te tikanga o tēnei ko te whakawhitinga pūtau take mai i tētahi tangata hauora ki roto i te tūroro. Heoi, he maimoatanga tino uaua, he morearea hoki tēnei. Nō reira, ko te tikanga ka mahia anake mō ngā tūroro kāore e aro ki ngā TKI.
He aha te āhua o te noho tahi me te CML, ā, he aha te āhua o te oranga?
Ina mutu te CML i muri i te maimoatanga, kāore he tohu, ā, kāore he tohu o te mate e kitea i roto i ngā whakamātautau. Ko te tikanga ka taea e koe te noho noa. Engari me haere tonu koe ki te tango rongoā hei whakahaere i te mate. Me toro atu hoki koe ki tō tākuta i ia wā, i ia wā, mō ngā whakamātautau toto hei tirotiro i te pai o te mahi a tō maimoatanga.
Whakakorenga Mate Kore Maimoatanga (TFR)
Koinei te whanaketanga hou rawa atu, ā, ko te mea tino whai hua i roto i te maimoatanga CML. Ko te tikanga o tēnei, ka taea e ētahi tūroro kua roa e tango ana i ngā TKI, ā, kua tino pai te whakahaere i tō rātou mate te whakamutu i te tango i te rongoā i raro i te tirotiro a tā rātou tākuta. Ahakoa kua mutu te rongoā, kāore anō te mate kia hoki mai. Engari kāore e taea tēnei e te katoa. Me tutuki e koe ētahi tohu mō tēnei.
Ko te mea nui, kaua rawa e mutu te tango i tō rongoā mō tetahi take me te kore kōrero ki tō tākuta. He tino morearea tēnā.
Ngā pātai nui hei pātai atu ki tō tākuta
Ina kitea e koe kei a koe te CML, he mea noa te maha o ngā pātai i roto i tō hinengaro. Kaua e mataku, pātai atu ki tō tākuta mō ēnei mea.
- He aha te wāhanga o te CML kei a au?
- He aha ngā kōwhiringa maimoatanga kei a au?
- He aha ngā āhuatanga o tōku tinana i te wā e rongoatia ana? He aha ngā pānga taha?
- Ka taea e au te mahi tonu i a au e whiwhi ana i te maimoatanga?
- Kia pēhea te auau o ngā whakamātautau toto hei tirotiro mēnā kei te angitu te maimoatanga?
- He aha ngā tūponotanga ka memeha haere taku mate?
- He pai te whakawhitinga pūtau take mō tōku āhua?
- Ko wai ka taea e au te kōrero ki a koe mō te whakahaere i ngā utu maimoatanga?
Karere Tangohia ki te Kāinga
- He mate pukupuku toto puhoi te tipu o te CML. Ehara i te mea tuku iho.
- He tino whai hua ngā maimoatanga arotahi o ēnei rā, e kiia nei ko ngā TKI, ā, e āhei ai te tini o te hunga whai CML ki te ora roa, ki te ora noa.
- Kia mōhiotia rā anō kei a koe te mate, kaua e mataku, engari me whai i ngā tohutohu a tō tākuta.
- He mea nui kia tangohia te rongoā i te wā tika, kia haere hoki ki te tākuta hauora mō ngā tirotiro hauora i te wā tika.
- Kaua rawa e mutu, e whakarerekē rānei i te maimoatanga me te kore whakaaetanga a tō tākuta.
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