Kua rongo koe i te mate toto totoka (CLL)? Me kōrero taipitopito tātou mō tēnei!

He tino ngenge noa iho rānei koe i ētahi wā? He maha rānei ōu pānga ki te kirika? He iti noa iho ōu puku e rite ana ki te mea kei tō kaki, kei ōu kēkē, kei tōu uma rānei? He tohu pea ēnei mō te Chronic Lymphocytic Leukemia, te CLL rānei. Kaua e manukanuka, nā te mea kāore e tohu ana kei a koe tēnei mate mēnā kei a koe ēnei tohu katoa. Engari he mea nui kia mōhio koe ki ēnei mea. Nō reira, me kōrero tātou mō te CLL i tēnei rā, āe?

He aha te mate toto totoka mau tonu (CLL)? He māmā noa iho...

Ko te mate pukupuku toto te mate pukupuku toto mau tonu (CLL). Koinei te momo mate pukupuku toto e tino kitea ana i roto i ngā pakeke. Ka puta ngā pūtau toto i roto i te hinu wheua. Ka puta tēnei āhuatanga ina rerekē ngā lymphocytes, he momo pūtau toto ma hauora i roto i te hinu wheua, arā, ka huri rātou ka noho hei mate pukupuku. Ka nui haere ēnei pūtau mate pukupuku, ka panaia ngā pūtau toto me ngā pereti toto hauora, e āwhina ana i te toto kia totoka.

Ko te nuinga o te wā ka pā te CLL ki te hunga neke atu i te 65 tau te pakeke. Heoi, i ētahi wā ka pā pea ki te hunga 30 tau te pakeke. Heoi anō, ka pā pea te CLL ki ētahi tāngata, kāore he tohu . He maha ngā tāngata ka kitea te mate i a rātou e whakamātautau toto ana mō tētahi atu mate, i a rātou rānei e tirotirohia ana e te rata ā-tau.

I tēnei wā, kāore he rongoā mō te CLL. Engari ehara tēnā i te mea hei āwangawanga. I roto i ngā tau tekau kua pahure ake nei, kua whakawhanakehia e ngā tākuta he maimoatanga hou hei whakahaere i te CLL me te whakaiti i tōna pānga. Nā ēnei maimoatanga kua roa ake te ora o te hunga whai CLL.

He aha ngā momo matua o te CLL?

E rua ngā momo matua o ngā pūtau toto mā i roto i ō tātou tinana, e kiia nei ko ngā lymphocytes. Ka taea e te CLL te whanake i roto i te kotahi anake o ēnei momo e rua.

• Ngā pūtau-B (ngā pūtau-B): Koinei ngā pūtau e whakaputa ana i ngā paturopi, he momo pūmua e mōhio ana, e whawhai ana hoki ki ngā iroriki kino, ngā huakita, ngā huaketo, tae atu ki ngā pūtau matepukupuku.
• Ngā pūtau-T (T-cells): Ka whakahaere ēnei i ngā urupare a te pūnaha ārai mate o tō tātou tinana. Ka kimihia hoki e rātou, ā, ka whakangaromia tikatia ngā pūtau rerekē, pērā i ngā pūtau matepukupuku.

Ko te momo CLL tino noa ko te CLL pūtau-B . Tērā tētahi āhuatanga e pā ana ki ngā pūtau-T, e kiia nei ko te T-cell prolymphocytic leukemia (PLL). Heoi, he tere ake te puta o ngā tohumate ki te hunga whai PLL i te hunga whai B- cell CLL.

He pēhea te noa o te ingoa o tēnei āhuatanga ko te CLL?

Ina hoki, ko te mate pukupuku toto toto mau tonu (CLL) tētahi o ngā momo mate pukupuku toto tino noa i roto i ngā pakeke. I te Hononga o Amerika, e pāngia ana e te mate te 5 i roto i te 100,000 tāngata. E ai ki te whakatau tata a te American Cancer Society ka tata ki te 18,700 ngā kēhi hou o te CLL i te tau 2023 anake. Hei whakamārama i tēnei, e matapaetia ana ka puta he neke atu i te 238,000 ngā kēhi hou o te mate pukupuku pūkahukahu (tētahi o ngā mate pukupuku tino noa) i te tau 2023. Nō reira, ahakoa kāore pea te CLL e ahua noa, ko tētahi o ngā momo mate pukupuku toto tino noa.

He aha ngā tohu o te CLL?

E ai ki tā mātou i kōrero ai i mua ake nei, ka pāngia ētahi tāngata e te CLL , kāore he tohu . Tērā pea ka roa ngā marama, ngā tau rānei, ka puta mai ngā tohu. Ko ngā tohu tino kitea ko:

• Ngenge: Ka pāngia pea ō toto whero e te CLL, ka puta ai te anemia. He tohu noa te ngenge o te anemia.
• Kirika: He tohu mate te kirika. Nā te mea ka pāngia ngā toto toto ma hauora e te CLL, ka nui ake te tūponotanga ka pāngia koe e ngā mate.
• Ngā kōpuku lymph pupuhi i te kaki, i ngā kēkē, i te uma, i te puku rānei.
• Te werawera o te pō.
• Te whakahekenga taumaha kāore i te whakamāramatia.
• Mamae, te mākū rānei i raro i ō rara: Ka pāngia tō ate, tō whēkau rānei e te CLL. Ina kohikohi ngā pūtau matepukupuku i roto i ēnei whekau, ka pupuhi.

He aha te take e puta ai te CLL? He aha ngā āhuatanga mōrearea?

Ka puta te mate pukupuku toto toto mau tonu (CLL) ina puta ētahi whakarerekētanga ira, i ngā ira rānei, i roto i ō tātou ira me ngā ira i roto i tō tātou oranga. Heoi, kāore anō kia tino mārama ngā kairangahau hauora he aha te take o ēnei whakarerekētanga. Heoi, kua tautuhia e rātou ētahi āhuatanga mōrearea ka pā ki tēnei:

• Hītori whānau: Kua whakaatuhia e ngā rangahau mēnā kei a koe tētahi o ō whanaunga tata, arā, tō whaea, tō pāpā, ō tuākana/teina, tamariki rānei, ka piki ake pea tō tupono ki te whakawhanake i te CLL mā te rua ki te whā ngā wā.
• Tau: I te toharite, e 71 tau te pakeke o ngā tūroro ina tāpaetia he CLL.
• Ira Tangata: He nui ake te tūponotanga o te whakawhanaketanga o te CLL ki ngā tāne.
• Te pānga ki te Agent Orange: Kua whakaatuhia e ngā rangahau he hononga i waenga i te Agent Orange, he matū i whakamahia i te Pakanga o Vietnam, me te CLL.
• Te lymphocytosis pūtau-B monoclonal:I tēnei āhua, he nui ake i te kotahi te momo pūtau-B i roto i tō toto i te mea noa. Mena kei a koe tēnei āhua, he iti noa te mōrearea ki te whakawhanake i te CLL.

He aha ngā raruraru ka pā mai i te CLL?

Ka pāngia ō toto whero, ō toto mā, me ō pereti toto e te CLL. Whakaarohia, ka haria e ngā toto whero te hāora puta noa i te tinana. Ka tiakina tātou e ngā toto mā i te mate. Ka āwhina ngā pereti toto ki te toto kia totoka. Nō reira, ina ngaro ēnei toto hauora me ngā pereti toto, ka pāngia koe e ngā raruraru pēnei i:

• Lymphoma: I waenganui i te 2% me te 10% o te hunga whai CLL ka pāngia e tētahi momo mate pukupuku e kiia nei ko te lymphoma.
• Te mate pukupuku kiri, te mate pukupuku pūkahukahu, te mate pukupuku koroni rānei: Ka ngoikore te pūnaha ārai mate o te CLL, ka kore e kaha ki te tiaki i a koe mai i ngā whakaeke, tae atu ki ngā pūtau mate pukupuku. Ka taea e tēnei te whakanui ake i tō tupono ki te whakawhanake i ētahi atu momo mate pukupuku.
• Te mate kore toto: Ka puta te mate kore toto ina kore e ranea ngā toto whero hei kawe i te hāora puta noa i te tinana.
• Thrombocytopenia: Ka pāngia pea tō tukunga pereti e te CLL. Ka puta te toto i tēnei.
• Ngā mate urutā auau: Ki te kore e ranea ngā pūtau toto ma hauora, ka nui ake te tūponotanga ka pāngia koe e ngā mate kitakita, harore, huaketo rānei.
• Ngā mate pūnaha ārai mate: Ka pāngia pea ētahi tāngata whai CLL e ngā āhuatanga pēnei i te anemia hemolytic autoimmune.

Me pēhea te tautuhi i te CLL?

Ina haere koe ki te tākuta, ka pātai atu ia ki a koe mō ō tohumate. Kātahi ka whakahaerehia he whakamātautau tinana, ā, ka tonoa pea ētahi whakamātautau, pēnei i:

• Te tatau toto katoa (CBC) me te rerekētanga: Ka ine tēnei whakamātautau i te maha o ngā toto whero, ngā toto mā, me ngā pereti toto i roto i ō toto. Ka tirohia hoki te nui o te hemoglobin (te pūmua e kawe ana i te hāora) i roto i ō toto whero.
• Te whakamātautau toto ā-taha: Ka tirohia e te tohunga taiwhanga hauora ō pūtau toto i raro i te karuārai hei tirotiro mō ngā pūtau matepukupuku.
• Te ine i te rere o te toto: Ka taea e tēnei whakamātautau taiwhanga te whakarato i ētahi atu kōrero mō ō pūtau toto. I roto i te CLL, ka whakamahia hei whakatau mēnā kei roto i ō pūtau toto mā ngā pūtau CLL.
• Ngā whakamātautau ira:Ka whakamahia e ngā tākuta ngā whakamātautau pēnei i te fluorescent in situ hybridization (FISH) me te immunoglobulin heavy chain (IGHV) hei tirotiro i ō chromosomes me ō ira. Mā te mārama ki ngā huringa kua puta i roto i ēnei chromosomes me ngā ira ka āwhina i ngā tākuta ki te whakatau me pēhea te rongoā i te CLL.

Ngā Wāhanga o te CLL

Ka whakatauhia e ngā tākuta te taumata o te mate pukupuku hei whakamahere maimoatanga me te matapae i te putanga. E rua ngā tikanga matua e whakamahia ana hei whakatau i te CLL: ko te pūnaha whakatau Rai me te pūnaha whakatau Binet .

I ētahi wā, ina pānui koe i ēnei wāhanga i roto i ngā tau me ngā reta, tera pea ka mataku koe, ka kore e pai. Tērā pea ka whakaaro koe, "He pēnei te whakaahuatanga o taku mate i roto i tētahi tauira?" E mārama ana ngā tākuta ki tēnā. Mena kāore koe i te mārama ki te mea e kōrerohia ana, he taumaha rānei ki a koe, tēnā pātai atu ki tō tākuta kia whakamārama mai me pēhea te pānga o tēnei pūnaha wāhanga ki tō āhua.

Pūnaha whakarārangi Rai

Ka whakarōpūhia e tēnei tikanga te CLL i runga i te tūponotanga ka kino haere, me te hiahia rānei ki te maimoatanga:

• He iti te mōrearea (i mōhiotia i mua ko te wāhanga Rai 0): Kei a koe te lymphocytosis (he pikinga ake o te maha o ngā lymphocytes), ā, he rerekē ngā pūtau toto ma i roto i te toto me/ranei te hinu wheua.
• Mōrearea waenga (i mua ko te wāhanga Rai I, ko te wāhanga II rānei): Kei a koe te lymphocytosis, te pupuhi o ngā kōpū lymph, me te nui haere o te whēkau me/ranei te ate.
• Te mōrearea nui (i mua ko Rai Stage III): He anemia tōu, he thrombocytopenia rānei (he iti te maha o ngā pereti toto).

Pūnaha whakarārangi Binet

Ko tēnei tikanga e hangai ana ki te maha o ngā pūtau toto me ngā pereti toto, tae atu ki te maha o ngā wāhi kei roto i tō tinana ngā kōpuku lymph e pupuhi ana:

• Wāhanga A: Kāore he anemia (he iti te maha o ngā toto whero) he iti rānei te maha o ngā pereti toto. Heoi, he pupuhi ō kōpū lymph i te iti rawa i ngā wāhi e rua o tō tinana. Hei tauira, tera pea he pupuhi ō kōpū lymph i tō kaki me tō hope.
• Wāhanga B: E toru ngā wāhi o te tinana e pupuhi ana ngā kōpū waikura, e pupuhi ana rānei te ate, te whēkau rānei. Heoi, kāore he anemia, ā, he noa te taumata o te pereti toto.
• Wāhanga C: He anemia tōu, ā, he pupuhi ngā kōpū lymph i ngā wāhi e toru, neke atu rānei, o tō tinana.

Me pēhea te rongoā mō te CLL?

Ka whakatauhia ngā kōwhiringa maimoatanga e ō tohu me ngā hua o te whakamātautau. Hei tauira, ki te mea he CLL tōmua tōu, ka tūtohu pea tō tākuta i te "tātari mataara/mātakitaki kaha".Ka taea e koe te whakamahi i te tikanga e kīia nei ko te "aroturuki." Kei roto i tēnei ko te aro turuki i tō hauora whānui, ngā tohumate, me ngā hua o ngā whakamātautau, me te kore e tīmata i te maimoatanga.

Ka pā pea ngā hua o ngā whakamātautau ira ki ngā whakatau maimoatanga. Hei tauira, ko ētahi huringa ira ka tere ake te kino o tō āhua, kāore rānei pea ngā maimoatanga CLL paerewa e pai te mahi e ai ki te tumanako.

Ko ngā maimoatanga tino noa mō te CLL ko te rongoā arotahi me te rongoā matū . I ētahi wā ka whakamahia te rongoā irahiko hei whakaiti i ngā tohu o te CLL. Ka rerekē ngā pānga taha o ia maimoatanga. Ka whakamārama mārama tō tākuta i ngā painga, ngā pānga taha, me ngā raruraru roa pea o te maimoatanga e whiwhi ana koe.

Te rongoā arotahi

Ka mahi tēnei maimoatanga mā te arotahi ki ngā pūtau matepukupuku. I roto i te mate pukupuku toto toto pūmau, ka mahi tēnei maimoatanga mā te aukati i te tipu o ngā pūtau toto mā matepukupuku. Ka patua e ētahi maimoatanga arotahi ngā pūtau matepukupuku me te kore e whara i ngā pūtau hauora. Ko ētahi o ngā rongoā e whakamahia ana mō tēnei ko:

• Te rongoā aukati tyrosine kinase a Bruton (BTK): Ka āraihia e tēnei maimoatanga tētahi whākōkī e āwhina ana i ngā pūtau-B ki te hanga i ngā pūtau toto mā. Hei tauira: ibrutinib (Imbruvica®) , acalabrutinib (Calquence®) , me zanubrutinib (Brukinsa®) .
• Te rongoā aukati BCL2: Ka ārai te rongoā venetoclax (Venclexta®) i tētahi pūmua e kiia nei ko te BCL2 e kitea ana i roto i ngā pūtau leukemia, tae atu ki ngā pūtau CLL. Ka taea e tēnei maimoatanga te patu i ngā pūtau leukemia, te whakanui ake rānei i tō rātou tairongo ki ētahi atu rongoā ārai matepukupuku.
• Te rongoā paturopi monoclonal: He momo rongoā ārai mate tēnei. Ko ngā paturopi monoclonal he momo paturopi i hangaia i roto i te taiwhanga. Ka aukati i te tipu o ngā pūtau matepukupuku, ka patu rānei i ngā pūtau matepukupuku. Hei tauira: rituximab (Rituxan®) me obinutuzumab (Gazyva®) .

Te rongoā matū

Tērā pea ka whakamahia e tō tākuta te chemotherapy hei rongoā matua mō te mate toto toto pūmau. Ko ētahi o ngā rongoā chemotherapy e whakamahia whānuitia ana mō te CLL ko:

• Fludarabine (Fludarabine - Fludara®)
• Chlorambucil (Chlorambucil - Leukeran®)
• Cyclophosphamide (Cytoxan®)
• Bendamustine (Bendamustine - Treanda®)

Te rongoā ārai mate

Ko te mahi a tēnei tikanga maimoatanga mā te whakaora, te whakapakari rānei i tō pūnaha ārai mate, te āwhina ki te whakangaro i ngā pūtau matepukupuku, ki te whakaroa rānei i tō rātou tipu.

Mō te CLL kāore anō kia aro ki te rongoā chemotherapy, kua hoki mai anō (ka hoki anō) te CLL, kei te kino haere rānei, ka whakamahia pea e ngā tākuta te rongoā immunotherapy lenalidomide (Revlimid®) .

Kei te rangahau hoki ngā kairangahau hauora i te rongoā a te chimeric antigen receptor (CAR-T) mō ngā tūroro CLL kāore e aro ki ngā maimoatanga paerewa.

Kia pēhea te roa ka taea e koe te ora me te CLL?

Ko te mate pukupuku toto toto mau tonu (CLL) he tino puhoi te whanaketanga. Ka taea e koe te noho me te CLL mō ngā tau i mua i te puta o ngā tohu. Kia puta mai ngā tohu, he tino whai hua ngā maimoatanga a ngā tākuta hei whakaora i te CLL. Ko te tikanga ka roa te whakaora i te CLL mō ngā tau maha i mua i te hokinga mai o te mate. Heoi, ka tūtohu pea tō tākuta i ētahi atu maimoatanga hei whakaora anō i te CLL. Kāore e taea te rongoā i te CLL, engari ka taea e te hunga whai mate te ora roa, te ora tonu.

E ai ki te whakatau tata a te National Cancer Institute, e 87.9% o ngā tūroro me te CLL e ora tonu ana i muri i te rima tau o te tātaritanga. Heoi, ina whakaarohia ēnei reiti oranga, he mea nui kia mahara ko ēnei he whakatau tata i ahu mai i ngā wheako o tētahi rōpū nui o ngā tūroro me te CLL. He maha ngā āhuatanga ka pā ki ēnei reiti oranga, tae atu ki tō hauora whānui, te wāhanga o tō mate i te wā i tātaritangahia ai, me te pai o te urupare a tō mate ki te maimoatanga. Mena he pātai āu, pātai atu ki tō tākuta he aha ngā mea hei tumanako atu māu i runga i tō āhuatanga.

He aha ngā mea ka tupu i te wāhanga whakamutunga o te CLL?

Ko te tikanga o te kupu "wāhanga mutunga" kāore e whai hua ngā maimoatanga ki te whakahaere, ki te whakamutu rānei i te mate CLL. I taua wā, tera pea ka pāngia koe e ngā mate urutā e mate ai koe, e te toto rānei kāore e taea te whakahaere, kāore pea e taea e ngā tākuta te whakaora.

Ka taea te ārai i tēnei āhuatanga?

Kāore anō kia kitea he huarahi hei ārai i te CLL i tēnei wā.

He aha te āhua o te noho tahi me te CLL?

Kei tō āhua. Ka taea e koe te pāngia e te CLL me te kore he tohu. Mena he tohu kei a koe, he maimoatanga hei whakaiti i aua tohu me te whakahaere i te mate. Heoi, kāore te mate e memeha rawa.

Anei ētahi whakaaro hei āwhina i a koe e noho tahi ana me te CLL:

• Tiakina koe i ngā mate urutā:He nui ake te mōrearea o te hunga whai CLL ki te pangia e ngā mate. Tērā pea ka mate ētahi mate. Pātai atu ki tō tākuta mō ngā kano kano e tika ana māu.
• Kia tūpato ki tō hauora whānui: Tērā pea ka nui ake tō tūponotanga ki te pāngia e te mate pukupuku kiri, te mate pukupuku pūkahukahu, te mate pukupuku koroni rānei. Pātai atu ki tō tākuta mō ngā whakamātautau tirotiro mate pukupuku.
• Whakahaerehia te ahotea: He maha ngā tāngata whai CLL e pāngia ana e ngā huringa o te whakamāmā me te hoki anō ki te mate. I a koe e haere tonu ana te mate, ka pāngia pea koe e te manukanuka me te mataku. Ki te pērā, pātai atu ki tō tākuta mō ngā kaupapa, ngā ratonga rānei hei āwhina i a koe ki te whakahaere i tō ahotea.
• Kai i tētahi kai hauora: Tērā pea ka ngaro tō hiahia kai i ētahi tohumate o te CLL. Kōrero ki tō tākuta mō te tiki tohutohu mai i tētahi tohunga kai. Mena he pai tō hiahia kai, ngana ki te kai i tētahi kai taurite kei roto ko ngā pūmua kikokore, ngā witi katoa, ngā hua me ngā huawhenua, me ngā ngako hauora. Ka taea e tēnei te whakapai ake i tō hauora whānui.
• Whakakorikori Tinana: Mā te whakakorikori tinana koe e āwhina ki te whakahaere i te ahotea me te pupuri i tō harikoa.
• Kia marino: Ka taea e te CLL te whakararuraru i a koe. Whakangāwarihia ina hiahia koe.
• Kia mōhio ki ngā mea hei tumanako atu: He mana te mātauranga. Pātai atu ki tō tākuta mō ngā tohu e whakaatu ana kei te kino haere tō āhua. Mena koinā, ka tūtohu pea tō tākuta i ētahi atu maimoatanga hei āwhina i te whakahaere pai ake i tō CLL.

He aha ngā pātai me pātai atu e au ki taku tākuta?

Akene he pai ki a koe te pātai i ēnei pātai:

• He aha te momo mate toto toto pūmau kei a au?
• Kāore he tohu o te mate. Āhea ahau me tīmata ai te maimoatanga?
• He aha ngā kōwhiringa maimoatanga kei a au?
• Me tango maimoatanga tonu ahau?
• Ka āwhina te maimoatanga i tōku āhua kia māhorahora?

Hei whakamutunga, ngā mea hei maumahara (Karere hei tango ki te kāinga)

Ko te mate toto toto pūmau (CLL) he momo mate toto e kitea nuitia ana i roto i ngā pakeke. Ka taea e koe te pāngia e tēnei mate mō ngā tau maha, kāore he tohu. Mena kei a koe te CLL, kāore pea koe e hiahia ki te tīmata tonu i te maimoatanga. Ahakoa kāore e taea e ngā tākuta te whakaora katoa, kei reira ngā maimoatanga hei whakaora i ngā tohu o te CLL me te whakaora i te mate. Ko ētahi tāngata whai CLL e ora ana mō ngā tau maha.

Ehara i te mea ngāwari te noho me te mate pūmau pēnei i te CLL. Tērā pea ka maha ngā huringa o te whakamāmā me te hokinga mai o te mate. I ia huringa, tērā pea ka āwangawanga koe mō ngā mea ka puta i muri mai. E mārama ana ō tākuta ki te āhua o te noho me te mate pūmau. Ka koa rātou ki te whakautu i ō pātai katoa, ā, ka āwhina i a koe i ngā huarahi katoa e taea ana e rātou. Nō reira, kaua e wehi ki te kōrero ki tō tākuta mō ō āwangawanga.

` Leukemia, CLL, matepukupuku toto, tohu, maimoatanga, lymphocytes, whakaoranga