Koj puas xav paub txog tus kab mob ntshav tsawg no thiab? Cia peb tham txog Waldenström Macroglobulinemia hauv cov lus yooj yim!

Koj puas tau hnov ​​txog Waldenström Macroglobulinemia? Nws yog ib lub npe ntev, nyuaj rau hais, puas yog? Nws yog ib hom mob qog noj ntshav uas loj hlob qeeb hauv cov ntshav. Tej zaum koj yuav tsis tau hnov ​​txog nws, vim nws yog ib qho mob tsis tshua muaj. Tab sis qhov ntawd tsis ua li cas, hnub no peb yuav tham txog nws yooj yim, hauv txoj kev uas koj tuaj yeem nkag siab.

Waldenstrom macroglobulinemia (WM) yog dab tsi?

Hais yooj yim xwb, Waldenstrom macroglobulinemia, los yog WM luv luv, yog mob qog ntshav hauv cov ntshav . Nws yog ib hom mob qog ntshav hu ua non-Hodgkin lymphoma, tseem hu ua lymphoplasmacytic lymphoma. Qhov tseeb, nws tsis tshua muaj. Xav txog seb, txawm tias nyob hauv lub tebchaws zoo li Asmeskas, tsuas muaj peb txog plaub tus neeg ntawm ib lab tus neeg muaj tus mob no.

Yog li, qhov '(WM)' no tsim li cas? Peb muaj pob txha hauv peb lub cev, thiab qhov ntawd yog qhov chaw uas peb cov qe ntshav raug tsim. Tus kab mob no pib thaum qee cov qe hu ua '(B cell)' (cov no yog ib hom cell hauv peb lub cev tiv thaiv kab mob, uas yog, cov cell uas tiv thaiv peb ntawm cov kab mob) hauv cov pob txha no dhau los ua cov qe mob qog noj ntshav.

Cov hlwb mob qog no, es tsis txhob nyob ib leeg, pib tsim ntau lub hlwb zoo li lawv tus kheej. Ib yam li cov nroj tsuag hauv hav zoov. Tom qab ntawd yuav ua li cas? Cov hlwb ntshav noj qab haus huv uas peb lub cev xav tau tsis muaj chaw, thiab lawv pib txo qis.

• Thaum cov qe ntshav liab qis, ces yuav muaj ntshav tsis txaus. Qhov no ua rau koj nkees thiab ntsej muag daj ntseg.
• Thaum cov qe ntshav dawb qis, muaj ib qho mob hu ua "neutropenia" tshwm sim, ua rau koj yooj yim mob.
• Thaum cov platelets (cov hlwb uas pab cov ntshav txhaws) qis (thrombocytopenia), kev los ntshav yuav tsis yooj yim nres.

Tsis yog li ntawd xwb, cov qog nqaij hlav no tsim cov protein txawv txav hu ua '(immunoglobulin M)' lossis '(IgM)'. Thaum cov protein '(IgM)' no siab dhau hauv cov ntshav, peb cov ntshav yuav tuab, zoo li zib ntab . Qhov no hu ua '(hyperviscosity syndrome).' Thaum cov ntshav tuab li no, nws yuav nyuaj rau cov ntshav ntws los ntawm cov hlab ntsha me me thoob plaws lub cev. Tom qab ntawd, ntau cov tsos mob hnyav tuaj yeem tshwm sim.

Qhov tseem ceeb yog tias tseem tsis tau muaj tshuaj kho tau WM. Tab sis tsis txhob txhawj. Muaj kev kho mob uas tuaj yeem pab tswj cov tsos mob, qee zaum txawm tias tshem tawm lawv, thiab pab koj kom noj qab nyob zoo. WM feem ntau yog ib qho kab mob loj hlob qeeb, yog li koj tuaj yeem nyob zoo nrog nws tau ntau xyoo.

Cov tsos mob ntawm tus kab mob '(WM)' no yog dab tsi?

Xav txog seb, kwv yees li ib ntawm plaub tus neeg uas muaj tus kab mob no tsis muaj tsos mob dab tsi li . Lawv tsuas paub txog tus kab mob no thaum lawv mus ntsib kws kho mob vim lwm yam laj thawj xwb. Tiam sis, thaum cov tsos mob tshwm sim, feem ntau lawv maj mam tshwm sim . Cia peb saib seb cov tsos mob no yog dab tsi:

• Tsis muaj zog thiab qaug zog tas li:Zoo li lub roj teeb tuag lawm.
• Kub taub hau: Lub cev kub tsis muaj laj thawj.
• Anorexia: Tsis xav noj mov.
• Hws Hmo Ntuj: Hws ntau thaum pw tsaug zog.
• Kev poob phaus: Koj dhau los ua nyias nyias tsis muaj laj thawj tshwj xeeb.
• Kev tsis meej pem: Nyuaj rau kev tsom ntsoov, me ntsis tsis meej pem.
• Kev o ntawm lub siab, tus po, lossis cov qog ntshav: Tsuas yog tus kws kho mob thiaj li qhia tau koj qhov tseeb.
• Cov tsos mob ntawm peripheral neuropathy, xws li loog ntawm cov ntiv tes thiab cov ntiv taw : Nws zoo li muaj qhov tingling, lossis poob ntawm qhov kev xav.
• Cov tsos mob ntawm cov ntshav txhaws: ntshav ntswg, cov pos hniav los ntshav thaum txhuam koj cov hniav, kiv taub hau, mob taub hau, thiab pom kev tsis meej.

Tsuas yog vim koj muaj ib lossis ob qho ntawm cov tsos mob no tsis tau txhais hais tias koj muaj WM. Tab sis yog tias cov tsos mob no tseem muaj, nws yog qhov zoo tshaj plaws los nrhiav kev pab tswv yim los ntawm kws kho mob.

Cov laj thawj rau kev tsim ntawm `(WM)` yog dab tsi?

Qhov ua rau muaj tus kab mob Waldenstrom's macroglobulinemia yog kev hloov pauv ntawm cov noob caj noob ces . Ntau tshaj 90% ntawm cov neeg uas muaj tus kab mob no, lossis cuaj ntawm kaum tus neeg, muaj kev hloov pauv hauv cov noob caj noob ces hu ua MYD88. Kwv yees li 40% ntawm cov neeg kuj muaj kev hloov pauv hauv cov noob caj noob ces hu ua CXCR4. Ob qho kev hloov pauv ntawm cov noob caj noob ces no pab cov hlwb tsis zoo hauv WM faib sai.

Qhov tseem ceeb yog tias cov kev hloov pauv caj ces no tsis yog los ntawm noob caj ces . Qhov ntawd yog, lawv tsis yog ib yam dab tsi uas koj tau txais los ntawm koj niam koj txiv, thiab lawv tsis yog ib yam dab tsi uas koj muab rau koj cov menyuam. Lawv tshwm sim thoob plaws hauv lub neej. Txawm li cas los xij, cov kws tshawb fawb tseem tsis tau paub meej tias dab tsi ua rau muaj cov kev hloov pauv caj ces no thaum xub thawj.

Leej twg muaj feem yuav mob no ntau dua? (Cov yam ua rau mob)

Muaj qee yam uas ua rau muaj feem ntau ntawm kev tsim '(WM)'. Cia peb saib seb lawv yog dab tsi:

• Hnub nyoog: Tus kab mob no feem ntau pom muaj ntawm cov neeg hnub nyoog 65 xyoo lossis laus dua.
• Haiv Neeg: Tus kab mob no feem ntau tshwm sim ntawm cov neeg dawb.
• Txiv neej/poj niam: Cov txiv neej muaj feem yuav muaj tus kab mob no ntau dua.
• Lwm yam mob: Tej zaum koj yuav muaj feem yuav mob ntau dua yog tias koj muaj cov kab mob xws li `(Hepatitis C)`, `(AIDS)`, `(Sjögren's Syndrome)`, lossis ib yam mob hu ua `(MGUS - Monoclonal Gammopathy of Undetermined Significance)` (qhov no yog ib qho ua ntej rau `(WM)`). Txawm li cas los xij, nws yog ib qho tseem ceeb uas yuav tsum nco ntsoov tias tsis yog txhua tus neeg uas muaj `(MGUS)` yuav mob `(WM)`.
• Keeb kwm tsev neeg: Yog tias koj cov txheeb ze tau muaj WM lossis lwm hom lymphoma, koj kuj tseem yuav muaj kev pheej hmoo.

Cov teeb meem uas yuav tshwm sim los ntawm tus kab mob no yog dab tsi?

Hauv qee kis mob hnyav, WM tuaj yeem ua rau muaj lwm yam teeb meem.

• Amyloidosis: Qhov no yog thaum cov protein tsis zoo raug tso rau hauv cov kabmob xws li lub plawv, lub ntsws, thiab lub raum.
• Cryoglobulinemia: Hauv qhov mob no, qee cov protein ntshav uas teb rau qhov txias yuav sib sau ua ke hauv cov ceg thiab sib sau ua ke. Qhov no tuaj yeem ua rau mob thiab xiav/dawb hloov xim (cyanosis).

Cov kws kho mob kuaj mob li cas? (Kev kuaj mob)

Koj tus kws kho mob siv tau ntau yam kev kuaj mob kom paub seb koj puas muaj WM. Lawv feem ntau nrhiav cov hlwb qog noj ntshav thiab cov protein IgM uas peb tau tham txog ua ntej.

• Kev kuaj ntshav thiab zis: Cov ntshav thiab zis raug coj mus kuaj seb puas muaj cov cim qhia tias muaj tus kab mob WM. Lawv nrhiav cov yam xws li cov qe ntshav tsawg thiab cov protein IgM tsis zoo.
• Kev kuaj duab: Kev kuaj CT lossis CT-PET scan, uas yog kev sib xyaw ua ke ntawm CT thiab PET scan, yog siv los nrhiav cov cim ntawm WM hauv lub cev. Cov kev kuaj no nrhiav cov khoom xws li cov kabmob o thiab cov qog ntshav.
• Kuaj qhov muag: Xyuas seb puas muaj ntshav ntws hauv qab lub qhov muag. Qhov no yog ib qho cim qhia tias muaj ntshav txhaws.
• Kev kuaj mob pob txha: Qhov no suav nrog kev coj me me ntawm cov pob txha thiab saib nws hauv qab lub tshuab microscope kom pom tias puas muaj cov hlwb qog noj ntshav.

Yuav kho tus mob `(WM)` li cas?

Zoo li peb tau hais ua ntej lawm, tseem tsis tau muaj tshuaj kho tus kab mob no. Yog li ntawd, kev kho mob zoo tshaj plaws yog kom txo cov tsos mob nrog cov kev phiv tsawg kawg nkaus . Koj tus kws kho mob yuav nrog koj tham thiab tsim ib txoj kev npaj kho mob uas haum rau koj. Nov yog qee txoj kev xaiv kho mob rau '(WM)':

• Tos ntsoov: Yog tias koj tsis muaj tsos mob, koj tus kws kho mob yuav tsis pib kho. Ib txhia neeg uas muaj WM yuav tsis xav tau kev kho mob rau ntau xyoo.
• Kev siv plasmapheresis / plasma exchange: Qhov no suav nrog kev siv lub tshuab los lim cov protein IgM uas tsis zoo los ntawm cov plasma, uas yog cov kua ntawm koj cov ntshav. Cov plasma uas tau ntxuav lawm ces muab rov qab rau hauv koj cov ntshav. Kev kho mob no yog siv los txo cov tsos mob ntawm cov ntshav txhaws.
• Kev Kho Mob Tiv Thaiv Kab Mob: Kev kho mob no siv koj lub cev tiv thaiv kab mob los rhuav tshem lossis qeeb qeeb kev loj hlob ntawm cov hlwb WM. Cov tshuaj Rituximab (Rituxan®) feem ntau yog muab ib leeg lossis nrog rau kev kho mob chemotherapy.
• Kev Kho Mob Chemotherapy: Cov tshuaj tua kab mob qog noj ntshav tuaj yeem muab ib leeg lossis ua ke nrog kev kho mob tiv thaiv kab mob.
• Cov tshuaj Corticosteroids: Ib hom tshuaj steroid, xws li dexamethasone, yuav muab tau nrog rau kev kho mob tiv thaiv kab mob thiab kev kho mob chemotherapy. Lawv pab tiv thaiv kab mob qog noj ntshav thiab txo cov kev phiv los ntawm kev kho mob.
• Kev kho mob rau lub hom phiaj:Txoj kev kho mob no ua haujlwm los ntawm kev thaiv cov protein uas cov hlwb qog noj ntshav siv los loj hlob. Ibrutinib (Imbruvica®) thiab zanubrutinib (Brukinsa®) yog ob txoj kev kho mob uas tau pom zoo los ntawm US Food and Drug Administration (FDA) los kho WM.
• Kev hloov cov hlwb pob txha: Hauv qhov no, cov hlwb pob txha noj qab haus huv raug hloov los hloov cov hlwb pob txha uas raug cuam tshuam los ntawm cov hlwb txawv txav. Qhov no tsis tshua ua, thiab tsuas yog ua rau cov neeg mob xaiv xwb.

Thaum twg kuv yuav tsum nrhiav kev pab kho mob?

Yog tias koj tau kuaj pom tias muaj WM, nrog koj tus kws kho mob tham tam sim ntawd yog tias koj muaj cov tsos mob tshiab lossis yog tias koj txhawj xeeb txog cov tsos mob uas twb muaj lawm. Thaum koj tau kuaj pom tias muaj WM, nws yog ib qho tseem ceeb uas yuav tsum nug cov lus nug kom paub seb yuav xav li cas. Nov yog qee cov lus nug uas koj tuaj yeem nug koj tus kws kho mob:

• '(WM)' loj npaum li cas? Qhov no yuav cuam tshuam li cas rau kuv lub neej?
• Kuv yuav tsum cia siab li cas rau lub sijhawm luv luv thiab ntev?
• Kuv puas yuav tsum pib kho mob tam sim ntawd?
• Koj pom zoo kom siv hom kev kho mob twg?
• Yuav muaj tej yam tshwm sim dab tsi los ntawm kev kho mob no?

Yog tias kuv muaj tus mob no, kuv yuav cia siab li cas?

Tsis yog txhua tus neeg uas muaj tus kab mob qeeb qeeb xws li Waldenstrom's macroglobulinemia zoo ib yam. Kev tshawb fawb qhia tau tias 66%, lossis ntau dua ob ntawm peb tus neeg, tseem muaj sia nyob 10 xyoo tom qab kuaj pom. Txawm li cas los xij, lub sijhawm ciaj sia tuaj yeem sib txawv raws li hnub nyoog . Feem ntau cov neeg hnub nyoog tshaj 65 (pawg hnub nyoog feem ntau kuaj pom tias muaj tus kab mob) tuag los ntawm cov laj thawj tsis muaj feem cuam tshuam rau WM.

Muaj ntau yam uas cuam tshuam rau qhov kev kwv yees ntawm koj tus kab mob. Piv txwv li:

• koj lub hnub nyoog
• Cov txiaj ntsig ntawm kev kuaj ntshav
• Hom kev hloov pauv caj ces (qee zaum qhov tsis muaj kev hloov pauv `(MYD88)` tuaj yeem qhia txog qhov tshwm sim tsis zoo)

Yog koj muaj lus nug txog koj tus mob, nrog koj tus kws kho mob tham . Nws paub koj zoo tshaj plaws thiab cov yam uas yuav cuam tshuam rau koj txoj kev noj qab haus huv.

Puas muaj dab tsi uas kuv ua tau kom kuv zoo siab dua?

Nyob nrog tus kab mob lymphoma zoo li Waldenstrom's macroglobulinemia txhais tau tias yuav tsum ua qee qhov kev hloov pauv loj rau koj lub neej. Nws yog ib qho tseem ceeb uas yuav tsum siv tag nrho cov peev txheej uas koj muaj. Tham nrog koj tus kws kho mob txog cov khoom noj uas yuav tsum noj thiab cov kev ntsuas kev saib xyuas tus kheej uas yuav tsum ua .

Yuav kom tsis txhob muaj kev kho siab, sib txuas lus nrog lwm tus neeg uas muaj tus kab mob tsawg tsawg no. Txawm tias koj xav li ntawd thaum xub thawj thaum koj paub tias koj muaj tus kab mob no, koj tsis yog tib leeg hauv txoj kev no . Nug koj tus kws kho mob thiab koom nrog cov pab pawg txhawb nqa.

Thaum kawg, nco ntsoov qhov no.

Cov kws tshawb nrhiav tseem tsis tau pom ib txoj kev kho rau Waldenstrom macroglobulinemia (WM). Txawm li cas los xij, lawv tau pom ntau txoj kev kho mob uas ua rau kev nyob nrog tus kab mob yooj yim dua . Muaj ntau tus neeg nyob nrog tus kab mob tau ntau xyoo yam tsis muaj tsos mob. Cov kev kho mob tshiab tso cai rau cov neeg uas muaj WM kom nyob ntev dua li yav dhau los, yam tsis muaj kev txo qis lawv lub neej zoo.

Yog koj tau txais qhov kev kuaj mob no, tsis txhob ntshai thiab nug koj tus kws kho mob txog qhov kev cia siab luv luv thiab ntev. Lawv yuav pab koj txiav txim siab txog txoj kev kho mob zoo tshaj plaws rau koj. Nco ntsoov tias, nrog cov lus qhia thiab kev txhawb nqa kho mob zoo, koj tuaj yeem ua neej tau zoo nrog tus mob no.

Waldenstrom macroglobulinemia, WM, mob qog ntshav hauv cov ntshav, IgM protein, hyperviscosity syndrome, pob txha lwj, lymphoma