He pilikia koko koʻikoʻi kou? E kamaʻilio kākou e pili ana i ka CMML (Chronic Myelomonocytic Leukemia)!

Ua lohe paha ʻoe i kahi maʻi i kapa ʻia ʻo `CMML` a i ʻole Chronic Myelomonocytic Leukemia ? ʻAʻole paha. No ka mea, he ʻano maʻi koko kakaikahi ia. Akā, he mea nui loa ia iā kākou e makaʻala i kēia. No ka mea, pili ia i ke ʻano o ka hana ʻana o ko kākou kino i ke koko. E kamaʻilio kākou e pili ana i kēia me ka maʻalahi, ma ke ʻano hiki iā ʻoe ke hoʻomaopopo.

He aha ka CMML? E hoʻomaopopo maʻalahi kākou!

I ka ʻōlelo maʻalahi, ʻo kou iwi iwi - ka ʻāpana huʻa i loko o kou mau iwi - ka mea e hana ai i ke koko. ʻO ke kanaka me CMML he nui loa ka hana ʻana o kahi ʻano koko keʻokeʻo i kapa ʻia ʻo monocytes . Hoʻopilikia kēia mau monocytes ʻē i nā koko koko ʻulaʻula olakino, nā platelets , a me nā koko koko keʻokeʻo olakino ʻē aʻe a mākou e pono ai. E noʻonoʻo e like me nā nāhelehele i loko o kahi māla e hoʻopilikia ana i nā lāʻau olakino.

Hoʻokaʻawale nā ​​kauka i kēia kūlana ma ke ʻano he Myeloproliferative neoplasm/Myelodysplastic syndrome (MPN/ MDS ). ʻOiai paha he hui paʻakikī kēia o nā huaʻōlelo, ʻo ia hoʻi:

• ʻO ka neoplasm Myeloproliferative (MPN): ʻO kēia ka wā e hana ai kou iwi iwi i nā ʻano koko hoʻokahi he nui . Ke hana ʻia ka nui o hoʻokahi ʻano, ua hoʻopilikia ʻia ke kaulike o ke koko a ʻaʻole hana pono ke koko.
• ʻO ka maʻi Myelodysplastic (MDS): He ʻano kēia kahi e lilo ai nā hunaola koko i hana ʻia e kou iwi iwi i mea ʻē a hewa ke ʻano . ʻO ke kikoʻī, ma kahi o nā hunaola koko olakino a oʻo, hana lākou i nā hunaola ʻōpiopio i kapa ʻia he mau hunaola blast.

Hiki i ka CMML ke ulu lohi loa i kekahi manawa. Akā i kekahi manawa hiki ke wikiwiki iki a ʻoi aku ka koʻikoʻi. E wehewehe kāu kauka iā ʻoe e pili ana i nā lāʻau lapaʻau e hiki ke kāohi i kona ulu ʻana.

He aha nā hōʻailona o CMML? Loaʻa iā ʻoe kēia mau mea pū kekahi?

ʻAʻole maopopo mau nā hōʻailona o CMML. I kekahi manawa, ʻo ka hoʻāʻo koko ke kumu mua. ʻOiai ke ʻike ʻia nā hōʻailona, ​​hele mālie lākou. E nānā inā kamaʻāina kēia mau hōʻailona iā ʻoe:

• Manaʻo luhi a nāwaliwali i nā manawa a pau: ʻO kēia ma muli o ka emi ʻana o nā hunaola koko ʻulaʻula, ʻo ia hoʻi ka anemia .
• Nā maʻi pinepine a me nā maʻi hoʻopilikia:ʻO kēia ke kumu o ka emi ʻana o nā hunaola koko keʻokeʻo, i kapa ʻia ʻo neutropenia.
• ʻO ke kahe pinepine ʻana o ka ihu, e huli ana i ka uliuli me kahi palapū liʻiliʻi: ʻO kēia ma muli o ka emi ʻana o nā platelets, i kapa ʻia ʻo thrombocytopenia.
• Splenomegaly : ʻO ka hoʻonui ʻia ʻana o ka spleen, aia ma ka ʻaoʻao hema hema o kou ʻōpū.
• Hepatomegaly : Ka hoʻonui ʻia ʻana o ke akepaʻa.
• Ka pohō kaumaha i wehewehe ʻole ʻia.
• Ka hou o ka pō.
• ʻEha iwi.
• Kuni.

E hoʻomanaʻo, ʻaʻole nā ​​kānaka a pau me kēia mau hōʻailona he CMML. Akā inā hoʻomau kēia mau hōʻailona, ​​ʻoi aku ka maikaʻi o ke ʻike ʻana i ke kauka.

Aia kekahi kumu kikoʻī no CMML?

ʻAʻole maopopo loa i nā kānaka noiʻi ke kumu o ka CMML. Eia nō naʻe, ua ʻike lākou i kekahi mau hoʻololi gene e pili ana i ka maʻi. Inā ua ʻike ʻia ʻoe me CMML, aia paha he ʻoi aku ma mua o hoʻokahi hoʻololi gene. ʻO kekahi o nā hoʻololi gene maʻamau:

• ʻO ka `TET2`
• ʻO `SRSF2`
• ʻAʻohe pilikia.
• ʻO `RAS` (ʻo kēia ka mea maʻamau)

E haʻi aku kāu kauka iā ʻoe i nā mea hou aʻe e pili ana i kēia gene.

ʻO wai ka mea i ʻoi aku ka nui o ka pilikia o ka hoʻomohala ʻana i ka CMML?

Aia kekahi mau kumu pilikia e hiki ke hoʻopilikia i ka ulu ʻana o CMML:

• Makahiki: Piʻi ka pilikia o ka loaʻa ʻana o kēia maʻi i kou wā ʻelemakule. ʻO ka awelika o ka makahiki o ka maʻi ma waena o 73 a me 75 mau makahiki. ʻO ke ʻano kēia, ʻoi aku ka ʻōpio o ka hapalua o ka poʻe i ʻike ʻia me ka maʻi ma mua o kēlā, a ʻoi aku ka ʻelemakule o ka hapalua ʻē aʻe.
• Kāne: ʻOi aku ka maʻamau o ka CMML i nā kāne ma mua o nā wahine.
• Lāʻau lapaʻau ma mua no ke kanesa: Ma kahi o hoʻokahi o ka ʻumi o ka poʻe i loaʻa i ka CMML ua loaʻa mua i ka chemotherapy a i ʻole ka radiation no ke kanesa. Akā hāʻawi wale nā ​​​​kauka i kēia mau lāʻau lapaʻau inā ʻoi aku ka maikaʻi o nā pono o ka lāʻau lapaʻau ma mua o ka pilikia o ka loaʻa ʻana o ke kanesa i ka wā e hiki mai ana.

He aha nā pilikia ʻē aʻe e hiki ke hana ma kēia ʻano?

Ma kahi o ʻelua o ka ʻumi o ka poʻe me CMML e loaʻa hou i kahi maʻi koko koʻikoʻi i kapa ʻia ʻo acute myeloid leukemia (AML). E kamaʻilio me kāu kauka e pili ana i kou pilikia o ka loaʻa ʻana o AML ma muli o kāu hōʻailona a me nā kumu pilikia.

Pehea e ʻike ai nā kauka i ka CMML?

E nīnau kāu kauka e pili ana i kāu mau hōʻailona a lawe i kāu mōʻaukala olakino. A laila e hana lākou i kekahi mau hoʻokolohua e nānā i kāu mau hunaola koko. Hiki i kēia mau hoʻokolohua ke komo pū me:

• Helu koko piha (CBC): Inā kiʻekiʻe loa ka helu o nā monocytes (monocytosis), he hōʻailona paha ia o CMML.
• ʻO ka pahū koko peripheral: Inā ʻike ʻia nā monocytes i kūlike ʻole a i ʻole immature (blast cells) ke nānā ʻia ma lalo o kahi microscope, hiki i kēia ke hōʻailona o CMML.
• ʻO ka biopsy iwi iwi: I kekahi manawa pono paha ke kauka e lawe i kahi ʻāpana liʻiliʻi o ka iwi iwi a hoʻāʻo iā ia i loko o ka lab e ʻike ai inā he mau monocytes maʻamau.
• Hoʻāʻo ʻana i ka genetics: Ke nānā pū nei nā kauka i nā hoʻololi gene e pili ana i nā maʻi ʻaʻai koko ʻē aʻe. ʻAe kēia iā lākou e kāpae i nā maʻi ʻē aʻe i loaʻa nā hōʻailona like a me nā hopena hoʻāʻo koko.

He aha nā pae o CMML?

Hoʻoholo nā kauka i ka mamao o ka laha ʻana o ka CMML, a i ʻole ke koʻikoʻi (ke kahua o ka maʻi kanesa), ma muli o ka helu o nā cell blast i loko o kou koko a me ka iwi iwi. ʻO kēia mau pae ʻelua:

• CMML-1: ʻOi aku ka liʻiliʻi ma mua o 4 mai loko mai o 100 mau pūnaewele i loko o kou koko he mau pūnaewele pahū. ʻOi aku ka liʻiliʻi ma mua o 9 mai loko mai o 100 mau pūnaewele i loko o kou iwi iwi he mau pūnaewele pahū.
• CMML-2: Ma waena o 5 a me 19 mai loko mai o 100 mau pūnaewele i loko o kou koko he mau pūnaewele pahū. Ma waena o 10 a me 19 mai loko mai o 100 mau pūnaewele i loko o kou iwi iwi he mau pūnaewele pahū.

Aia i kēia manawa e hoʻoholo ai kāu kauka i ka lāʻau lapaʻau kūpono loa a maikaʻi hoʻi nāu.

He aha nā lāʻau lapaʻau no CMML?

ʻO ka mea mua, pono paha ʻoe i ka lāʻau lapaʻau e hōʻoia i loaʻa iā ʻoe nā hunaola koko olakino. Hiki i kēia ke komo pū me ka lāʻau lapaʻau e hoʻonui i ka helu o kāu mau hunaola koko a i ʻole nā ​​hoʻoili koko maʻamau. Hiki paha i kēia ke lilo i ʻāpana o ka mālama palliative e kāohi i nā hōʻailona.

ʻO nā lāʻau lapaʻau ʻē aʻe e pili pono ana i ka CMML:

• ʻO ke kāpili ʻana o nā cell kumu allogeneic: ʻO kēia wale nō ka lāʻau e hiki ke ho'ōla loa i ka CMML. Eia naʻe, ʻaʻole kūpono ia no nā mea āpau. Hiki iā ia ke hana i nā pilikia e hoʻoweliweli i ke ola e like me ka maʻi graft-versus-host.
• Kemoterapi: Hoʻōki nā lāʻau lapaʻau Kemoterapi i ka ulu ʻana o nā monocytes i kāohi ʻole ʻia. Hiki i kēia ke kōkua i ka hōʻoluʻolu ʻana i nā hōʻailona. Hoʻohana kēia i nā lāʻau lapaʻau e like me Hydroxyurea a me nā mea hana Hypomethylating (HMA).
• Nā hoʻokolohua lapaʻau:Inā ʻaʻole kōkua nā lāʻau ʻē aʻe, e ʻōlelo paha kāu kauka e komo ʻoe i kahi hoʻokolohua lapaʻau. Ke noiʻi nei nā hoʻokolohua lapaʻau i ka pono o nā lāʻau hou (e laʻa, ka lāʻau lapaʻau i kuhikuhi ʻia, immunotherapy) no CMML.

Āhea wau e ʻike ai i ke kauka?

Pono ʻoe e ʻike pinepine i kāu kauka (ʻo ka maʻamau i hoʻokahi manawa i ka mahina a i hoʻokahi manawa i kēlā me kēia ʻeono mahina). He mea nui loa ia e mālama ʻoe i kēia mau manawa. I loko o kēia mau manawa, e nīnau kāu kauka e pili ana i kāu mau hōʻailona, ​​​​e hana i nā hoʻāʻo koko, e nānā i ka maikaʻi o kāu lāʻau lapaʻau, a e hana i nā hoʻoponopono e pono ai.

I kēia manawa, inā loaʻa iā ʻoe kekahi mau hopena ʻaoʻao koʻikoʻi a i ʻole i manaʻo ʻole ʻia mai kāu lāʻau lapaʻau , e kamaʻilio koke me kāu kauka . E haʻi aku kāu kauka iā ʻoe i nā hōʻailona e makaʻala ai, ma muli o ka lāʻau lapaʻau āu e loaʻa nei.

He aha kāu e manaʻo ai i ka wā e noho ai me kēia maʻi?

ʻO ke anawaena o ke ola no kekahi mea i ʻike ʻia me CMML ma kahi o hoʻokahi a ʻekolu mau makahiki. Eia hou, ʻo ka "waena" kahi waiwai waena. ʻO ke ʻano kēia, ʻo ka hapalua o ka heluna kanaka he pōkole ke ola a ʻo ka hapalua he lōʻihi ke ola. Eia nō naʻe, he nui nā mea e hoʻoholo ai i kāu wānana. ʻO kēia mau mea:

• Nā hopena hoʻāʻo koko: Hiki i kāu helu o nā cell koko ke hāʻawi i nā hōʻailona e pili ana i kāu prognosis. He mau waiwai koʻikoʻi kāu monocyte, blast cell, a me nā helu platelet. ʻO kou pae hemoglobin kekahi waiwai koʻikoʻi e nānā pinepine ai kāu kauka.
• Nā hoʻololi hoʻoilina: ʻO kekahi mau hoʻololi hoʻoilina, no ka laʻana he hoʻololi ʻana i loko o ka gene `ASXL1`, ua pili pū me kahi wānana ʻoi aku ka maikaʻi ʻole.
• Ka pinepine o ke kahe koko: Inā ʻaʻole pono ʻoe i ke kahe koko pinepine e hoʻihoʻi i kou mau hunaola koko, maikaʻi pinepine kāu hopena.

Aia nō hoʻi kou wānana i ka holomua ʻana o kou maʻi i ka `AML` (acute myeloid leukemia). ʻOi aku ka maʻalahi o kēia inā loaʻa iā ʻoe ka `CMML-2`.

He aha kaʻu e hana ai e noho maikaʻi a ikaika hoʻi?

Inā loaʻa iā ʻoe ka CMML, ʻo kekahi o nā mea maikaʻi loa hiki iā ʻoe ke hana, ʻo ia ke kuleana no kou olakino ma nā ʻano āpau . I kēia manawa, he mea nui e ʻai i nā meaʻai momona a loaʻa ka hiamoe lawa. He mea nui nō hoʻi ke kaulike ma waena o ka hana ikaika a me ka loaʻa ʻana o ka hoʻomaha lawa. ʻO ka launa pū ʻana me nā poʻe ʻē aʻe e noho nei me ka maʻi kanesa he ala maikaʻi loa ia e hakakā ai i nā manaʻo o ka mehameha. E kamaʻilio me kahi mea lapaʻau i loaʻa ka ʻike i ka hana ʻana me nā poʻe maʻi kanesa.

Hiki i ke kanesa ke hoʻolilo i ke kanaka i mea kōkua ʻole, akā e hoʻomanaʻo, ke kāohi nei ʻoe i kou ola.A aia nā lāʻau lapaʻau e kōkua iā ʻoe.

ʻAʻole maʻalahi ka noho ʻana me CMML. Aia kou hopena i nā kumu he nui e kū hoʻokahi iā ʻoe. E noi i kāu kauka e wehewehe i ke ʻano o kēia mau mea a pehea lākou e hoʻopilikia ai i kāu prognosis. E hoʻomaopopo i kāu mau koho lapaʻau i hiki iā ʻoe ke hilinaʻi e hoʻokō ka mālama āu e koho ai i kāu mau pahuhopu.

ʻO ka leka koʻikoʻi loa e lawe i ka home

He maʻi koʻikoʻi ka CMML. Akā inā ʻike ʻoe iā ia, e hana pū me kāu kauka, e loaʻa ka lāʻau kūpono, a e hana i nā hoʻololi maikaʻi i ke ʻano o ka nohona, hiki iā ʻoe ke hoʻāʻo e ola maikaʻi me kēia maʻi. Mai haʻalele i ka manaʻolana. Aia kou ʻohana, nā hoaaloha, a me nā kauka ma laila e kōkua iā ʻoe. ʻAʻole ʻoe hoʻokahi. Inā he mau nīnau a hopohopo paha kāu, mai makaʻu e nīnau i kāu kauka. ʻO kou kuleana ia.

` CMML, Leukemia Myelomonocytic Mau Loa, Kanesa Koko, Iwi ʻŌpū, Monocytes, Nā Hōʻailona, ​​Lapaʻau