Koj cov qe ntshav puas tsis tsim tau zoo? Cia peb kawm txog Myelodysplastic Syndrome (MDS)!

Koj puas xav tias koj nkees thiab qaug zog tas li? Tej zaum koj puas ua pa nyuaj txawm tias koj ua haujlwm me ntsis lawm los xij? Los yog koj puas pom muaj qhov mob thiab los ntshav thoob plaws koj lub cev? Txawm hais tias koj xav tias cov no yog tej yam ib txwm muaj, tej zaum yuav muaj ib qho laj thawj uas koj yuav tsum txhawj xeeb me ntsis txog qhov no. Hnub no peb yuav tham txog ib qho mob zoo li no, uas yog myelodysplastic syndrome.

Kab mob myelodysplastic syndrome (MDS) yog dab tsi?

Tam sim no cia peb saib seb qhov Myelodysplastic Syndrome (MDS) no yog dab tsi. Ib txhia neeg kuj hu nws ua Myelodysplasia. Tsis ntev los no, nws kuj hu ua Myelodysplastic Neoplasm. Hais yooj yim, nws yog ib hom mob qog noj ntshav . Tab sis qhov tshwm sim hauv qhov no yog tias cov hlwb tseem ceeb uas ua ntshav hauv peb lub cev - peb hu lawv (hematopoietic stem cells) - tsis loj hlob zoo, uas yog, lawv tsis loj hlob zoo. Cov hlwb no nyob hauv peb cov pob txha. Yog li qhov teeb meem pib thaum cov hlwb tseem ceeb no tsis loj hlob zoo thiab dhau los ua cov qe ntshav liab, cov qe ntshav dawb, thiab cov ntshav platelets noj qab haus huv.

Thaum koj lub cev tsis muaj cov qe ntshav txaus, koj tuaj yeem muaj cov mob hnyav xws li ntshav tsis txaus. Koj kuj tuaj yeem kis tau kab mob ntau zaus thiab los ntshav ntau zaus. Rau qee tus neeg, MDS tuaj yeem hnyav zuj zus thiab hloov mus ua mob qog noj ntshav hu ua mob qog ntshav myeloid (AML) .

Tus mob no, hu ua MDS, yog ib qho mob tsis tshua muaj . Hauv Tebchaws Meskas, nws cuam tshuam rau kwv yees li plaub tus neeg ntawm txhua 100,000 tus neeg txhua xyoo. Yog tias koj raug kuaj pom tias muaj MDS, koj cov kws kho mob yuav sim ua kom qeeb qeeb ntawm tus kab mob, tswj koj cov tsos mob, thiab kho txhua yam teeb meem uas yuav tshwm sim.

Muaj hom MDS twg?

Cov kws kho mob faib cov mob MDS no ua ntau hom. Lawv saib cov txiaj ntsig ntawm ntau qhov kev kuaj. Cia peb saib seb cov kev kuaj ntawd nrhiav dab tsi:

• Cov qe ntshav liab thiab cov qe ntshav dawb uas noj qab nyob zoo thiab cov platelet suav: Thaum koj cov qe ntshav liab qis, peb hu ua anemia. Tej zaum koj yuav xav tias nkees heev thiab ua tsis taus pa.
• Cov qe ntshav tsis loj hlob, lossis cov qe ntshav tawg: Cov qe ntshav tawg no zoo li cov qe ntshav tsis loj hlob. Lawv siv qhov chaw ntau dhau hauv cov pob txha, ua rau nws nyuaj rau cov qe ntshav noj qab haus huv los tsim. Yog tias koj tsis muaj cov qe ntshav dawb noj qab haus huv txaus, koj yuav kis tau kab mob ntau zaus. Thiab yog tias koj tsis muaj cov platelets noj qab haus huv txaus, nws yuav nyuaj rau kom tsis txhob los ntshav.
• Cov Sideroblasts:Cov no yog cov qe ntshav liab uas tsis tau loj hlob. Qhov tshwj xeeb txog lawv yog tias es tsis txhob siv hlau los ua hemoglobin, lawv khaws hlau. Koj paub, hemoglobin yog ib qho protein uas pab peb cov qe ntshav liab nqa oxygen thoob plaws lub cev. Hlau yog qhov tseem ceeb rau qhov no. Yog li, yog tias cov kws kho mob pom cov sideroblasts no, nws txhais tau tias koj cov hemoglobin tsis ua haujlwm zoo.
• Kev Tsis Zoo ntawm Cov Chromosomal: Cov Chromosomes yog cov feem ntawm peb cov cell uas muaj cov noob caj noob ces. Cov noob caj noob ces yog ua los ntawm DNA. Yog tias muaj kev tsis zoo ntawm cov chromosomes no, nws txhais tau tias muaj qee yam tau cuam tshuam rau koj cov DNA thiab ua rau muaj kev hloov pauv ntawm cov chromosomes hauv koj cov qe ntshav.

Cov tsos mob ntawm tus mob myelodysplastic syndrome yog dab tsi?

Nco ntsoov tias, qee zaum koj yuav muaj MDS yam tsis muaj tsos mob dab tsi. Hauv cov xwm txheej zoo li no, qhov mob no raug pom thaum lub sijhawm kuaj ntshav tas li. Cov tsos mob tseem ceeb uas ntau tus neeg ntsib yog cov qe ntshav liab tsawg, lossis ntshav tsis txaus. Txawm li cas los xij, cov tsos mob ntawm ntshav tsis txaus thiab lwm cov tsos mob ntawm MDS tuaj yeem zoo ib yam li cov tsos mob ntawm lwm yam mob uas tsis hnyav heev.

Yog li ntawd, yog tias koj pom ib qho ntawm cov kev hloov pauv hauv qab no, tshwj xeeb tshaj yog tias lawv tsis ploj mus tom qab ob peb lub lis piam, nco ntsoov mus ntsib kws kho mob.

• Yog koj xav tias koj ua tsis tau pa (peb hu qhov no ua pa tsis taus).
• Yog koj xav tias koj tsis muaj zog lossis nkees heev , thiab qhov qaug zog tsis ploj mus txawm tias tom qab koj tau so ntau txaus lawm los xij.
• Yog koj pom tias koj daim tawv nqaij dawb dua li niaj zaus. Tej zaum yog tias koj daim tawv nqaij tsaus, tus kws kho mob yuav kuaj xyuas seb puas muaj qhov poob xim hauv koj lub qhov muag qis, hauv koj lub qhov ncauj, thiab hauv koj lub qhov ntswg.
• Yog tias koj mob nqaij lossis los ntshav yooj yim dua li niaj zaus.
• Yog tias koj pom cov pob liab me me ntawm koj daim tawv nqaij, cov no yuav yog petechiae, cov hlab ntsha me me hauv qab daim tawv nqaij.
• Yog tias koj feem ntau kis tau kab mob nrog kub taub hau .

Dab tsi ua rau MDS?

Zoo li muaj ob txoj hauv kev tseem ceeb los tsim MDS. Ib qho yog los ntawm kev koom nrog qee yam kev ua ub no uas ua rau muaj kev pheej hmoo ntawm kev tsim tus kab mob no. Qhov thib ob yog los ntawm kev txais qee yam mob caj ces.

Cov haujlwm uas tuaj yeem cuam tshuam nrog MDS

• Tau txais kev kho mob chemotherapy lossis kev kho mob hluav taws xob rau mob qog noj ntshav yav dhau los. Cov kws kho mob hu qhov no tias therapy-related MDS (tMDS). Feem ntau, cov tsos mob ntawm tMDS tshwm sim li tsib txog xya xyoo tom qab kev kho mob.
• Kev raug rau qee yam carcinogens, suav nrog cov pa luam yeeb, tshuaj tua kab, thiab cov kuab tshuaj xws li benzene.
• Kev raug cov hlau hnyav xws li mercury lossis lead.

Cov mob caj ces uas yuav cuam tshuam nrog MDS

Ntawm 4% thiab 15% ntawm cov neeg uas muaj tus mob no tau txais cov mob caj ces uas ua rau lawv muaj feem yuav mob ntxiv. Cov mob no suav nrog:

• Kab mob Fanconi anemia: Qhov no yog ib qho mob caj ces tsis tshua muaj uas koj cov pob txha tsis tsim cov qe ntshav txaus.
• Dyskeratosis congenita: Qhov no yog lwm yam mob caj ces tsis tshua muaj. Ntawm no, koj cov pob txha tsis tsim cov qe ntshav txaus.
• Diamond-Blackfan anemia: Qhov no yog ib qho mob ntshav tsis tshua muaj uas koj cov pob txha tsis tsim cov qe ntshav liab txaus.

Yuav kuaj mob myelodysplastic syndrome li cas?

Cov kws kho mob ua raws li ob peb kauj ruam los kuaj mob MDS no:

• Kev suav cov ntshav tag nrho (CBC) thiab kev kuaj sib txawv: Yuav muab cov ntshav coj los ntawm koj thiab koj cov qe ntshav liab thiab dawb raug soj ntsuam. Nws kuj suav tus lej ntawm txhua hom qe ntshav dawb.
• Kev kuaj ntshav ntawm cov hlab ntsha sab nraud: Qhov no kuaj seb puas muaj kev hloov pauv ntawm qhov loj me, hom, duab, thiab qhov loj ntawm cov qe ntshav hauv koj cov qauv ntshav, thiab seb koj cov qe ntshav liab puas muaj hlau ntau dhau.
• Kev tshuaj xyuas cytogenetic: Tus kws kho mob kuaj mob saib cov qauv ntshav hauv qab lub tshuab microscope kom pom tias puas muaj kev hloov pauv hauv cov chromosomes ntawm koj cov qe ntshav.
• Kev kuaj mob pob txha: Yuav ua qhov kev kuaj no, tus kws kho mob muab ib rab koob khoob rau hauv koj lub duav, coj cov qauv pob txha, ntshav, thiab pob txha, thiab kuaj xyuas nws hauv qab lub tshuab microscope.

Cov theem ntawm tus mob myelodysplastic syndrome yog dab tsi?

Cov kws kho mob faib cov mob ua ntau theem raws li qhov kev pheej hmoo ntawm tus mob uas yuav loj hlob mus ua mob ntshav dawb hu ua acute myeloid leukemia (AML). Lawv siv lub tshuab ntsuas kev pheej hmoo hu ua International Prognostic Scoring System (IPSS) . Nov yog qee yam uas cov kws kho mob xav txog:

• Txawm koj muaj tej yam cim qhia tias koj tsis muaj ntshav txaus, los ntshav, lossis muaj kab mob.
• Koj muaj feem yuav mob ntshav dawb (leukemia).
• Qee qhov kev hloov pauv hauv koj cov chromosomes.
• Txawm koj tau mob MDS tom qab tau txais kev kho mob chemotherapy lossis kev kho mob hluav taws xob rau mob qog noj ntshav.
• Koj lub hnub nyoog thiab kev noj qab haus huv feem ntau.

Yuav kho tus mob myelodysplastic syndrome li cas?

Cov kws kho mob xav txog ntau yam thaum npaj kev kho mob rau MDS:

• Hom MDS uas koj muaj.
• Txawm koj muaj mob xws li ntshav tsis txaus, ntshav los, lossis kab mob vim MDS.
• Txawm koj tau mob MDS tom qab tau txais kev kho mob chemotherapy lossis kev kho mob hluav taws xob rau mob qog noj ntshav.
• koj lub hnub nyoog.
• Koj txoj kev noj qab haus huv feem ntau.

Kev kho mob rau myelodysplastic syndrome tej zaum yuav suav nrog kev saib xyuas txhawb nqa thiab kev kho mob uas rhuav tshem cov qe ntshav tsis zoo .

Kev Saib Xyuas Txhawb Nqa

Qhov no yuav suav nrog:

• Kev hloov ntshav lossis kev pub ntshav: Yog tias koj muaj mob ntshav tsis txaus, koj tuaj yeem hloov ntshav liab. Yog tias koj muaj teeb meem nrog kev los ntshav, koj tuaj yeem hloov ntshav platelet.
• Cov tshuaj erythropoiesis-stimulating agents (ESA): Kev kho mob no ua rau koj cov qe ntshav liab loj hlob ntau ntxiv.
• Tshuaj tua kab mob: MDS tuaj yeem cuam tshuam rau koj cov qe ntshav dawb, ua rau koj muaj feem yuav kis tau kab mob ntau dua. Yog li ntawd, tej zaum yuav muab tshuaj tua kab mob rau koj.

Kev kho mob kom tshem tawm cov qe ntshav tsis zoo

Qhov no yuav suav nrog:

• Kev kho mob qog noj ntshav: Cov tshuaj kho mob qog noj ntshav tib yam siv rau mob qog ntshav myeloid (AML) siv tau rau qhov no.
• Kev kho mob tiv thaiv kab mob: Kev kho mob no yog siv rau qee hom MDS. Kev kho mob no tswj lub cev tiv thaiv kab mob uas ua haujlwm ntau dhau thiab tuaj yeem pab txo qhov xav tau kev hloov ntshav.
• Kev Hloov Cov Qog Ntshav: Qhov no suav nrog kev hloov koj cov qe ntshav uas tsim cov qe ntshav nrog cov qe ntshav, los ntawm koj lossis tus neeg pub dawb. Cov qe ntshav no raug coj los ntawm koj cov ntshav lossis pob txha. Cov qe ntshav no raug khaws cia rau hauv lub tub yees thaum koj tab tom txais kev kho mob chemotherapy, tom qab ntawd yaj thiab muab rov qab rau hauv koj lub cev los ntawm kev txhaj tshuaj rau hauv cov hlab ntsha. Cov qe ntshav no tom qab ntawd raug tso cai kom loj hlob hauv koj lub cev thiab ua cov qe ntshav tshiab.

Txhua txoj kev kho mob no muaj ntau yam kev phiv thiab teeb meem sib txawv. Thaum koj xav txog cov kev xaiv kho mob, nws yog ib qho tseem ceeb heev uas yuav tsum nug koj tus kws kho mob txog cov kev phiv thiab teeb meem ntawm txhua txoj kev.

Cov neeg uas muaj mob myelodysplasia yuav tau txais txiaj ntsig los ntawm kev kho mob palliative . Kev kho mob no tuaj yeem pab tswj cov tsos mob ntawm MDS thiab cov kev mob tshwm sim ntawm kev kho mob. Thiab qhov tseem ceeb, nws tuaj yeem pab tswj kev ntxhov siab ntawm kev nyob nrog tus kab mob ntev li no.

Puas kho tau tus mob myelodysplastic syndrome?

Tib txoj kev kho MDS kom zoo yog kev hloov cov noob hlwb kom zoo . Hmoov tsis zoo, tsis yog txhua tus neeg tuaj yeem tau txais kev kho mob no. Nug koj tus kws kho mob seb hom kev hloov pauv no puas yog rau koj thiab yog tias nws yog ib qho kev xaiv koj yuav tsum xav txog.

Lub neej cia siab ntawm ib tus neeg uas muaj tus kab mob myelodysplastic syndrome yog ntev npaum li cas?

Myelodysplastic syndrome yog ib qho teeb meem kev noj qab haus huv loj heev uas tuaj yeem ua rau muaj mob hnyav.Tsis tas li ntawd xwb, qhov no yog ib qho teeb meem kev noj qab haus huv uas nyuaj heev, thiab txhua tus neeg raug kev cuam tshuam sib txawv. Koj tus kws kho mob yog qhov chaw zoo tshaj plaws los qhia txog koj tus kheej qhov teeb meem thiab qhov kev kwv yees.

Puas tiv thaiv tau tus kab mob myelodysplastic syndrome?

Tsis yog, tab sis kev nkag siab txog cov yam ua rau muaj MDS tuaj yeem pab cov kws kho mob kuaj mob thiab kho MDS thaum ntxov. Myelodysplastic syndrome yog txuam nrog kev kho mob chemotherapy thiab kev kho mob hluav taws xob, nrog rau kev raug rau qee yam tshuaj lom neeg thiab cov hlau hnyav. Tham nrog koj tus kws kho mob txog koj keeb kwm kev kho mob thiab txhua qhov kev raug tshuaj lom neeg thiab cov hlau hnyav ntev. Lawv tuaj yeem pab koj ntsuas koj tus kheej qhov kev pheej hmoo.

Kuv yuav saib xyuas kuv tus kheej li cas?

MDS cuam tshuam rau txhua tus neeg sib txawv. Ib txhia neeg muaj MDS tab sis tsis muaj tsos mob. Yog tias qhov no yog qhov teeb meem rau koj, koj tus kws kho mob yuav pom zoo kom kuaj ntshav txhua peb lub hlis los saib xyuas kev hloov pauv hauv koj cov qe ntshav. Yog tias koj muaj MDS thiab tau txais kev saib xyuas txhawb nqa, xws li kev hloov ntshav, koj yuav xav tau kev kho mob ntxiv kom txo qhov zaus ntawm kev hloov ntshav. Nov yog qee cov kauj ruam uas koj tuaj yeem ua los txhawb koj txoj kev kho mob:

• Yog koj siv cov khoom luam yeeb (xws li kev haus luam yeeb thiab kev haus vaping), sim tso tseg. Nug koj tus kws kho mob txog cov kev pab cuam tso tseg luam yeeb.
• Tswj koj tus kheej kom muaj qhov hnyav zoo.
• Nrhiav cov kev ua ub ua no uas koj nyiam thiab ua ntau zaus li ntau tau.
• Nco ntsoov tias MDS yog ib yam kab mob ntev, thiab cov kws kho mob tuaj yeem kho nws tab sis tsis kho nws. Tsis yog txhua tus yuav nkag siab txog yam koj tab tom dhau los. Tham nrog lwm tus uas tau dhau los ntawm tib yam li koj tuaj yeem pab tau. Koj pab neeg kho mob tuaj yeem pab koj nrhiav cov kev pab cuam thiab cov peev txheej zoo li no.

Txawm hais tias MDS yog ib yam kab mob ntev ntev los xij, nws tsis tau txhais hais tias koj yuav tsum nyob tsis muaj kev cia siab. Muaj kev kho mob uas tuaj yeem pab tswj tus mob.

Kuv yuav tsum mus rau chav kho mob ceev thaum twg?

Myelodysplastic syndrome tuaj yeem ua rau muaj ntshav tsis txaus, teeb meem los ntshav, thiab kab mob. Koj yuav tsum mus rau chav kho mob ceev yog tias koj muaj:

• Yog tias koj kub taub hau txog 38.3 degrees Celsius (100.4 degrees Fahrenheit) lossis siab dua, qhov kub taub hau yog ib qho cim qhia tias koj muaj kab mob.
• Yog koj los ntshav tsis tu ncua.

Kuv yuav tsum nug kuv tus kws kho mob li cas?

Vim tias myelodysplastic syndrome yog ib yam kab mob tsis tshua muaj, tej zaum koj yuav muaj ntau cov lus nug txog nws. Nov yog qee cov lus nug uas koj tuaj yeem nug koj tus kws kho mob:

• MDS puas yog mob qog noj ntshav?
• MDS cuam tshuam li cas rau kuv?
• Kuv tus MDS puas yuav ua rau muaj teeb meem kev noj qab haus huv loj heev? Yog tias muaj, hom twg?
• Kuv tsis muaj tsos mob. Kuv yuav ua li cas thiaj ncua tau qhov kev loj hlob ntawm cov mob ntsig txog MDS?

Cov Lus Xaus Kawg coj mus tsev

Yog tias koj muaj tus kab mob myelodysplastic syndrome (MDS), nws yog ib hom mob qog noj ntshav uas yog ib yam kab mob ntev. Tsis muaj kab mob twg yooj yim, tab sis kev nyob nrog tus kab mob ntev txhais tau tias yuav tsum daws qhov teeb meem ntawm lub siab uas nws muaj. Tab sis kev nyob nrog MDS tsis tau txhais hais tias koj yuav tsum tso tseg kev cia siab. Muaj cov kev kho mob uas tuaj yeem pab tswj MDS. Tej zaum koj yuav tsim nyog rau kev sim tshuaj uas tab tom nrhiav kev kho mob tshiab rau tus kab mob myelodysplastic syndrome. Kuj tseem muaj tej yam uas koj tuaj yeem ua rau koj tus kheej. Nug koj tus kws kho mob txog kev hloov pauv hauv lub neej, xws li kev noj zaub mov zoo thiab kev tawm dag zog. Cov no tuaj yeem pab koj kom noj qab haus huv li sai tau. Tsis txhob ntshai, thiab tsis txhob raug kev txom nyem ib leeg. Tham nrog koj tus kws kho mob txog txhua yam, thiab tau txais kev pab uas koj xav tau.

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