Ua lohe paha ʻoe i ka "Waldenström Macroglobulinemia"? ʻAʻole paha. He inoa lōʻihi a paʻakikī ke haʻi ʻia, ʻeā? Akā, mai hopohopo. He ʻano maʻi ʻaʻai koko kakaikahi loa ia, akā he mea maʻamau loa. I kēia lā, e kamaʻilio mākou e pili ana i kēia maʻi ma ka ʻōlelo maʻalahi hiki iā ʻoe ke hoʻomaopopo, e like me ke kamaʻilio ʻana me kahi hoaaloha. E nānā kākou i ke ʻano maoli, he aha nā hōʻailona, a pehea e mālama ʻia ai.
He aha ka Waldenström Macroglobulinemia (WM)?
I ka ʻōlelo maʻalahi, he maʻi kanesa kēia e hoʻopilikia i kou koko. I ka pololei, no kahi hui o nā maʻi kanesa i kapa ʻia ʻo Lymphoma, a he ʻano lymphoma non-Hodgkin. Ua kapa ʻia hoʻi ʻo ia he lymphoplasmacytic lymphoma. He mea kākaʻikahi loa ia. ʻOiai ma kahi ʻāina e like me ʻAmelika, hoʻopilikia wale ia i ʻekolu a ʻehā mau kānaka mai loko mai o hoʻokahi miliona. No laila hiki iā ʻoe ke noʻonoʻo i kona kakaʻikahi.
I kēia manawa, e nānā kākou pehea i hana ʻia ai kēia i loko o ke kino.
ʻO kekahi o nā ʻano cell koʻikoʻi loa i loko o kā mākou ʻōnaehana pale ʻana ua kapa ʻia ʻo "nā cell B." Hana ʻia kēia mau mea i loko o ko mākou iwi iwi. Ua ʻike ʻoe he wahi ka iwi iwi i loko o ko mākou mau iwi e like me kahi hale hana e hana ana i nā cell koko.
No laila, i loko o WM, lilo kēia mau pūnaewele B olakino i mau pūnaewele maʻi kanesa a hoʻomaka e māhele a hoʻonui me ke kāohi ʻole. Ke hoʻopiha kēia mau pūnaewele kanesa i ka iwi iwi, hoʻopiha lākou i kā mākou mau pūnaewele koko olakino.
No laila, hiki ke hoʻemi ʻia ʻekolu mau ʻano nui o nā hunaola koko:
- Ka emi ʻana o nā hunaola koko ʻulaʻula: Ua kapa ʻia kēia he "anemia". ʻO kēia ka mea e luhi loa ai ʻoe a make ke ola .
- Ka emi ʻana o nā keena koko keʻokeʻo: Ua kapa ʻia kēia he "neutropenia." Ua like nā keena koko keʻokeʻo me nā koa i loko o ko mākou kino. Mālama kēia mau keena iā mākou mai nā maʻi. No laila, ke emi kēia mau keena , hiki ke loaʻa pinepine nā maʻi .
- Nā platelet i emi iho: Ua kapa ʻia kēia he `(thrombocytopenia).` ʻO kēia nā mea e kōkua ai i ke kāpili ʻana o ke koko. ʻO lākou nā mea e hoʻōki ai i ke kahe ʻana o ke koko mai kahi ʻeha liʻiliʻi. No laila, i ka wā e haʻahaʻa ai nā platelet, ʻaʻole hiki i kahi ʻeha liʻiliʻi ke hoʻōki i ke kahe ʻana o ke koko, a hiki iā ʻoe ke loaʻa nā palapū ma kou kino .
Eia kekahi, hoʻopuka kēia mau hunaola kanesa i nā nui he nui o kahi protein ʻano ʻē i kapa ʻia ʻo `(immunoglobulin M)` a i ʻole `(IgM)`. Ke hōʻiliʻili kēia protein `(IgM)` i loko o ke koko, mānoanoa ko kākou koko. E noʻonoʻo i ke koko, ka mea e like me ka wai, mānoanoa e like me ka syrup. Ua kapa ʻia kēia ʻo `(hyperviscosity syndrome)` i ka ʻepekema lapaʻau.
Ke mānoanoa ke koko e like me kēia, he paʻakikī ke neʻe ʻana ma o nā kīʻaha koko liʻiliʻi loa i loko o ko kākou kino. Hiki i kēia ke hana i nā hōʻailona koʻikoʻi e like me ka poniuniu a me ke kahe ʻana o ka ihu.
ʻAʻohe lāʻau lapaʻau no WM i kēia manawa. Eia nō naʻe, no ka mea he mea maʻamau ia, me ka mālama maikaʻi ʻana, hiki ke kāohi ʻia nā hōʻailona, a i kekahi manawa hoʻopau loa ʻia, a hiki i nā kānaka ke ola maikaʻi no nā makahiki.
He aha nā hōʻailona hiki ke loaʻa o ka maʻi WM?
ʻO ka mea kupaianaha, ʻo ia hoʻokahi o ka hapahā o ka poʻe me kēia maʻi ʻaʻole hōʻike i kekahi mau hōʻailona. ʻIke ʻia lākou ma kahi hanana i ka wā o nā hoʻokolohua ke hele lākou e ʻike i ke kauka no kekahi maʻi ʻē aʻe. Inā ʻike ʻia nā hōʻailona, hiki mālie lākou, lohi loa.
E nānā kākou i nā hōʻailona maʻamau e like me kēia.
| Hōʻailona | I ka ʻōlelo maʻalahi... |
|---|---|
| Ka nāwaliwali a me ka luhi nui | Manaʻo luhi ʻole me ka nui o ka hiamoe āu e loaʻa ai, ma muli o ka nele o nā hunaola koko ʻulaʻula (anemia). |
| Kuni me ke kumu ʻole | Ke kuni me ka ʻole o ka maʻi. |
| Ka nalowale o ka makemake a me ka pohō kaumaha | Ka pohō kaumaha me ka ʻole o ka hoʻoikaika ʻana, me ka ʻike ʻole. |
| Ka hou nui ʻana i ka pō | Ke hou nui nei a hiki ʻole ke hiamoe, ua pulu nā moena. |
| Nā pilikia o ka hoʻomanaʻo a me ka ʻike (Confusion) | Hiki ke loaʻa nā hahau ma muli o ke kahe ʻana o ke koko i ka lolo ma muli o ke kāpili ʻana o ke koko. |
| ʻO ka pehu ʻana o ke ake, ka spleen, a i ʻole nā lipine lymph | Hōʻiliʻili nā hunaola kanesa i loko o kēia mau ʻōkana, e hoʻonui ana iā lākou. |
| Ka mae ʻana o nā lālā (Peripheral Neuropathy) | He ʻano ʻūlū ma nā manamana lima a me nā manamana wāwae, me he mea lā e holo ana nā nalo a puni. |
| Nā hōʻailona o ke kahe koko | Kahe ke koko o ka ihu, ke kahe ʻana o nā ʻāʻī i ka wā e palaki ai i nā niho, ka poniuniu, ka ʻeha poʻo pinepine, ka ʻike pōwehiwehi. |
No ke aha e loaʻa ai kēia ʻano maʻi?
ʻO ke kumu nui o kēia, ʻo ia nā hoʻololi genetic. ʻO ia hoʻi, nā loli i loko o kā mākou mau genes. ʻEiwa o 10 mau kānaka me WM he mutation i loko o kahi gene i kapa ʻia ʻo ``MYD88``. A ma kahi o ʻehā o 10 mau kānaka he loli i loko o kahi gene i kapa ʻia ʻo ``CXCR4``. Kōkua nā loli i loko o kēia mau genes ʻelua i nā hunaola kanesa ʻē e māhele a ulu wikiwiki.
Akā ʻo ka mea nui a hōʻoluʻolu hoʻi ma ʻaneʻi, ʻaʻole i hoʻoilina ʻia kēia mau loli genetic.
ʻO ia hoʻi, ʻaʻole kēia he mea āu i loaʻa ai mai kou makuahine a makua paha. A ʻaʻole ia he mea āu e hoʻoili ai i kāu mau keiki. He mau loli hou kēia e hana ʻia ana i loko o ke kino i ke ola.
Akā, ʻaʻole i hiki i nā kānaka noiʻi ke loaʻa kahi kumu kūpono no ke kumu o kēia mau hoʻololi hoʻoilina.
He aha nā kumu pilikia no ka hoʻomohala ʻana i kēia maʻi?
Aia kekahi mau kumu e hoʻonui iki i ka likelika o ka loaʻa ʻana o kēia maʻi. Eia nō naʻe, ʻo ke alo ʻana o kēia kumu ʻaʻole ia he manaʻo e ulu ka maʻi.
| Kumu pilikia | Wehewehena |
|---|---|
| Makahiki | ʻIke pinepine ʻia ka maʻi i nā poʻe ma luna o 65 mau makahiki. |
| Lāhui | ʻIke pinepine ʻia i waena o ka poʻe keʻokeʻo. |
| Kāne/Wahine | ʻOi aku ka nui o ka loaʻa ʻana o ia mea i nā kāne ma mua o nā wahine. |
| Nā kūlana olakino ʻē aʻe | ʻOi aku ka nui o ka pilikia o ka poʻe me nā maʻi e like me ka Hepatitis C, AIDS, a me Sjögren's Syndrome. Hiki i kahi maʻi i kapa ʻia ʻo ``(MGUS)`` ke lilo i mea mua i WM. Eia naʻe, ʻaʻole nā mea āpau me MGUS e loaʻa iā WM. |
| Moʻolelo ʻohana o ka maʻi | Hiki ke hoʻonui iki ʻia ka pilikia inā ua loaʻa i kahi hoahānau koko ʻo WM a i ʻole kekahi ʻano lymphoma ʻē aʻe. |
Pehea e ʻike ai ke kauka i kēia maʻi?
Inā loaʻa iā ʻoe nā hōʻailona, e hana kāu kauka i kekahi mau hoʻokolohua e hōʻoia inā loaʻa iā ʻoe ka maʻi. ʻO nā hoʻokolohua nui e nānā i nā hunaola kanesa a me ka protein "(IgM)" ʻē i loko o kou koko.
- Nā hoʻāʻo koko a me ka mimi: Nānā kēia i ka helu haʻahaʻa o nā cell koko (nā cell ʻulaʻula, nā cell keʻokeʻo, nā platelets) a me nā pae kiʻekiʻe loa o ka protein "(IgM)".
- Nā hoʻāʻo kiʻi: Hiki ke hoʻohana ʻia nā hoʻāʻo e like me ka "CT scan" a i ʻole "PET scan" e nānā i nā lymph node pehu a me nā ʻōpū i hoʻonui ʻia e like me ke akepaʻa a me ka spleen.
- Hoʻokolokolo maka: I kekahi manawa, hiki ke loaʻa nā kahe koko liʻiliʻi i loko o ka maka, ma ke kua o ka maka, ma muli o ke kāpili ʻana o ke koko. Hiki i ke kauka maka ke nānā i kēia.
- Biopsy Iwi ʻAoʻao: ʻO kēia ka hoʻāʻo koʻikoʻi loa e hōʻoia i ka maʻi. Ma kēia, lawe ʻia kahi hāpana liʻiliʻi loa o ka iwi ʻaoʻao mai kahi e like me ka iwi ʻūhā a nānā ʻia ma lalo o kahi microscope. A laila hiki ke hoʻohana ʻia kēia e hoʻoholo ai inā he mau hunaola kanesa i loko.
He aha nā lāʻau lapaʻau no WM?
E like me kā mākou i ʻōlelo ai ma mua, ʻoiai ʻaʻole hiki ke ho'ōla piha ʻia kēia maʻi, aia nā lāʻau lapaʻau kūpono loa e kāohi i nā hōʻailona. E loiloi kāu kauka i kou kūlana a hoʻomohala i kahi hoʻolālā lapaʻau e kūpono iā ʻoe a he liʻiliʻi loa nā hopena ʻaoʻao.
| ʻAno lapaʻau | He aha ka mea e hana ʻia ai? |
|---|---|
| Ke Kali Makaʻala | Inā ʻaʻohe ou hōʻailona, e nānā wale aku kāu kauka iā ʻoe me ka hoʻomaka ʻole ʻana i kekahi lāʻau lapaʻau. Hana maikaʻi kekahi poʻe no nā makahiki me ka ʻole o ka lāʻau lapaʻau. |
| Plasmapheresis (hoʻololi plasma) | Hana ʻia kēia inā loaʻa iā ʻoe nā hōʻailona o ke kāpili ʻana o ke koko. Hoʻokaʻawale kahi mīkini i ka ʻāpana wai i kapa ʻia ʻo plasma mai kou koko, wehe i ka protein IgM ʻino, a hoʻihoʻi i ka plasma i hoʻomaʻemaʻe ʻia i kou kino. |
| Hoʻōla lāʻau pale | Pili kēia i ka hoʻohana ʻana i kāu ʻōnaehana pale ponoʻī e luku i nā hunaola kanesa. Hoʻohana pinepine ʻia ka lāʻau "Rituximab" no kēia. |
| Kemoterapia | Ke hāʻawi nei i nā lāʻau lapaʻau e pepehi i nā hunaola kanesa. I kekahi manawa ua hui pū ʻia kēia me ka immunotherapy. |
| Hoʻōla i kuhikuhi ʻia | He ʻano lāʻau lapaʻau hou kēia. Hoʻopili kēia mau lāʻau i nā protein kikoʻī e kōkua i nā hunaola kanesa e māhele a ulu, e hoʻōki ana i kā lākou hana. ʻO `(Ibrutinib)` a me `(Zanubrutinib)` nā lāʻau lapaʻau like ʻole. |
| Hoʻoili Kelepona Kumu | He lāʻau lapaʻau kākaʻikahi loa kēia, hana wale ʻia ma nā poʻe maʻi i koho ʻia. Ma kēia, ua pani ʻia ka iwi i hōʻino ʻia e ka maʻi ʻaʻai me ka iwi olakino. |
Pehea lā ke ʻano o ke ola me kēia maʻi?
No ka mea he maʻi holomua loa ia, ʻaʻole like ka ʻike o kēlā me kēia kanaka. Ua hōʻike ʻia e ka noiʻi he 66 o 100 mau kānaka (ʻoi aku ia ma mua o 2 o 3) e ola mau ana he 10 mau makahiki ma hope o ka hōʻoia ʻana. Eia nō naʻe, ʻokoʻa kēia me ka makahiki. I ka hapa nui o nā hihia, ʻaʻole make ka poʻe i hōʻoia ʻia ma hope o 65 mau makahiki mai WM, akā mai nā kūlana ʻē aʻe e ulu ana i ko lākou ʻelemakule ʻana.
ʻO ke ʻano o kāu hana ʻana ma muli o kekahi mau kumu:
- kou mau makahiki
- Nā hopena o kāu mau hōʻike hoʻāʻo koko
- ʻO ke ʻano o ka hoʻololi genetic āu i loaʻa ai
Inā he mau nīnau kāu e pili ana i kēia, e kamaʻilio me kāu kauka. Ua ʻike ʻo ia iā ʻoe a me nā mea āpau e pili ana i kou olakino.
He aha kāu e hana ai e noho olakino ai?
ʻO ka noho ʻana me kahi maʻi lōʻihi e like me WM hiki ke hana i kekahi mau loli nui i kou ola, akā he nui nā mea hiki iā ʻoe ke hana e kōkua.
- E nīnau i kāu kauka: He aha nā meaʻai a me nā mea inu kūpono iā ʻoe, he aha nā hoʻoikaika kino maikaʻi iā ʻoe, a me nā mea e pono ai ʻoe e hana e noho olakino noʻonoʻo.
- E launa pū me nā poʻe ʻē aʻe: Ke loaʻa iā ʻoe kahi maʻi laha ʻole e like me kēia, hiki ke manaʻo mehameha, e like me "ʻO wau wale nō ka mea ma ka honua me kēia maʻi." Akā, ʻaʻole ʻoe hoʻokahi. Aia nā hui kākoʻo no ka poʻe me kēia maʻi. E noi i kāu kauka e hoʻopili iā ʻoe i hoʻokahi. ʻO ke kamaʻilio ʻana me ka poʻe i ʻike i nā mea like me ʻoe hiki ke lilo i kumu ikaika nui.
Leka Lawe-Home
- ʻO ka Waldenström Macroglobulinemia (WM) kahi maʻi kanesa koko maʻamau a hiki ke mālama ʻia.
- ʻAʻohe hōʻailona o ka nui o ka poʻe i ʻike ʻia me ka maʻi i ka wā mua, no laila hiki iā lākou ke ola maikaʻi no nā makahiki me ka ʻole o ka lāʻau lapaʻau.
- ʻAʻole kēia he maʻi hoʻoilina, no laila mai hopohopo e pili ana i ka hoʻoili ʻana i kāu mau keiki.
- ʻAʻole ka pahuhopu nui o ka mālama ʻana i ka maʻi, akā, e kaohi i nā hōʻailona a mālama i kou ola maikaʻi.
- E kamaʻilio ākea me kāu kauka lapaʻau e pili ana i nā nīnau, nā makaʻu, a i ʻole nā kānalua āu e loaʻa ai. E kōkua ʻo ia iā ʻoe.
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