Tus kab mob Castleman hais txog ib pab pawg uas tsis tshua muaj teeb meem uas ua rau muaj kev loj hlob ntawm cov cell hauv cov qog ntshav thoob plaws hauv koj lub cev. Muaj ntau hom kab mob Castleman, thiab kev kho kom tsim nyog nyob ntawm seb koj muaj ntau yam dab tsi. Yog tias koj xav tias koj muaj tus kab mob Castleman, mus ntsib koj tus kws kho mob kom tau txais kev kuaj mob tshwj xeeb. Ua haujlwm ze nrog koj pab kws kho mob txhawm rau txiav txim siab kho mob zoo tshaj rau koj. Yog tias koj xav tau kev txhawb nqa ntxiv, ncav tes rau cov koom haum tshawb fawb uas kawm kab mob Castleman, txuas nrog lwm tus neeg mob, thiab nrhiav kev nplij siab los ntawm koj tsev neeg thiab cov phooj ywg.
Cov kauj ruam
Txoj Kev 1 ntawm 3: Txheeb Xyuas Txoj Cai Kho Mob
Kauj Ruam 1. Mus ntsib koj tus kws kho mob yog tias koj muaj cov tsos mob ntawm Castleman
Ntau tus neeg mob uas muaj tus kab mob Castleman tsis muaj tsos mob tshwm sim. Koj yuav tsis paub tias koj muaj nws tshwj tsis yog koj tus kws kho mob ceeb toom cov qog ntshav loj thaum lub sijhawm kuaj mob ib txwm lossis kuaj duab. Txawm li cas los xij, teem sijhawm nrog koj tus kws kho mob tam sim yog tias koj pom cov tsos mob xws li:
- Cov qog ntshav loj hauv koj lub caj dab, caj dab caj dab, hauv qab, lossis lub puab tsaig
- Ua npaws
- Poob qhov hnyav uas tsis muaj qhov ua rau pom tseeb (piv txwv li, koj tsis tau hloov koj li kev noj zaub mov lossis kev tawm dag zog ib ce)
- Qaug zog
- Xeev siab
- Hmo ntuj tawm hws
- Cov tsos mob ntawm daim siab lossis tus po, xws li o, mob, lossis puv hauv koj lub plab
Kauj Ruam 2. Nrhiav kws kho mob uas tshwj xeeb rau kab mob Castleman
Tus kab mob Castleman feem ntau yog kho los ntawm kws kho ntshav (kws paub txog ntshav thiab kab mob hauv lub cev), kws phais neeg, lossis kws kho mob qog noj ntshav (kws kho mob kho mob qog noj ntshav thiab lwm yam mob). Txij li CD tsis tshua muaj, koj tus kws kho mob yuav tsis tau ntsib kev kho nws. Yog tias koj tus kws kho mob xav tias koj muaj tus kab mob Castleman, lawv yuav zoo li xa koj mus rau tus kws tshaj lij txhawm rau kuaj thiab kho mob ntxiv.
- Yog tias koj tus kws kho mob tsis tuaj yeem qhia tus kws tshaj lij hauv koj thaj tsam, ncav tes mus rau Castleman Disease Collaborative Network (CDCN) ntawm CDCN.org txhawm rau pab nrhiav koj tus kws tshaj lij kab mob Castleman ze tshaj.
- Ib tus kws tshaj lij tuaj yeem ua qhov kev ntsuam xyuas txhawm rau txheeb xyuas seb hom kab mob Castleman twg uas koj muaj, thiab qhia kev kho kom tsim nyog raws li koj qhov kev kuaj mob.
Kauj Ruam 3. Soj ntsuam kev kuaj mob txhawm rau txiav txim seb hom CD twg koj muaj
Muaj ntau qhov kev ntsuam xyuas uas koj tus kws kho mob tuaj yeem ua los txiav txim siab hom CD uas koj muaj. Qhov no yuav pab koj tus kws kho mob txiav txim seb hom kev kho mob twg yog qhov zoo rau koj. Kev ntsuam xyuas raug rau CD suav nrog:
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Ntshav thiab tso zis:
Koj tus kws kho mob yuav kuaj koj cov ntshav lossis tso zis txhawm rau kuaj ntshav tsis txaus thiab qee cov protein txawv txav uas cuam tshuam nrog CD. Cov kev ntsuas no tseem tuaj yeem pab txiav tawm lwm yam ua rau koj cov tsos mob, xws li kev kis mob.
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Kev xeem duab:
Koj pab neeg kho mob yuav siv cov cuab yeej siv suav nrog CT scan, PET scans, MRI scan, lossis ultrasound txhawm rau nrhiav kev loj hlob ntawm koj cov qog ntshav thiab txheeb xyuas qhov twg ntawm cov qog cuam tshuam nyob.
-
Lymph node biopsy:
Los ntawm kev phais me me, koj tus kws kho mob yuav rho tawm cov qauv ntawm cov nqaij mos uas cuam tshuam thiab kawm nws. Qhov no tuaj yeem pab lawv txheeb xyuas lub subtype ntawm koj daim CD lossis txiav tawm lwm yam mob uas cuam tshuam rau cov qog ntshav, xws li qog ntshav qog ntshav.
Hom Kab Mob Castleman
Unicentric Castleman Kab Mob:
Qhov no yog hom feem ntau. Hauv UCD, ib leeg cov qog ntshav tau nthuav dav, feem ntau yog hauv siab lossis hauv plab.
Kab Mob Multicentric Castleman:
Daim ntawv CD no cuam tshuam rau ntau cov qog ntshav thoob plaws lub cev. Nws feem ntau cuam tshuam nrog kev kis tus kab mob xws li HHV-8 lossis HIV, tab sis tuaj yeem tshwm sim yam tsis paub txog (tus kab mob idiopathic multicentric Castleman).
Kauj Ruam 4. Nug tus kws kho mob cov lus nug
Koj tus kws kho mob thiab lwm pab neeg tu koj yuav xav xam phaj koj txog koj cov tsos mob thiab koj keeb kwm kev noj qab haus huv. Qhov no kuj yog lub sijhawm zoo rau koj nug koj tus kheej cov lus nug lossis nce kev txhawj xeeb uas koj muaj txog koj kev kho mob. Qee cov lus nug zoo los nug koj tus kws kho mob suav nrog:
- Koj puas tau kho tus kab mob no ua ntej? Yog tsis yog, koj puas tuaj yeem xa kuv mus rau kws kho mob uas muaj?
- Yam kev xeem twg uas koj yuav tsum tau ua? Kuv yuav npaj tau qhov kev xeem li cas?
- Puas yog kuv kuaj mob tau tshuaj xyuas los ntawm tus kws paub txog kab mob uas muaj kev paub nrog CD?
- Yam kab mob dab tsi ntawm Castleman kuv muaj?
- Lwm yam kev kuaj mob twg koj tau txiav txim siab thiab txiav tawm?
- Hom kev kho mob twg koj qhia rau kuv tus mob? Cov kev pheej hmoo yog dab tsi?
- Kuv yuav tsum pib kho thaum twg? Yuav kho ntev npaum li cas?
- Kuv puas tsim nyog rau ib qho kev sim tshuaj tam sim no?
- Kuv puas yuav tsum tau mus ntsib kev saib xyuas tom qab kho tas?
Txoj Kev 2 ntawm 3: Tau Txais Kev Kho Mob
Kauj Ruam 1. Tau txais kev kho mob phais rau UCD (tus kab mob unicentric Castleman)
Yog tias koj muaj UCD, nug koj tus kws kho mob kom xa mus rau tus kws phais neeg uas tuaj yeem phais tshem tawm cov qog ntshav loj. Kev tshem tawm phais yog kev kho mob ntawm kev xaiv rau UCD thiab muaj txiaj ntsig zoo. Cov tsos mob feem ntau daws tom qab phais thiab rov tshwm sim tsawg. Qhov hnyav ntawm kev phais yog nyob ntawm qhov chaw cuam tshuam cov qog ntshav nyob.
- Qee tus neeg mob tuaj yeem mus tsev tom qab kev phais thaum lwm tus, tshwj xeeb tshaj yog cov uas cuam tshuam rau ntawm lub hauv siab hauv siab, tej zaum yuav tsum nyob hauv tsev kho mob tau ob peb hnub.
- Ua raws li koj tus kws phais neeg qhia ua ntej thiab tom qab txheej txheem.
- Qee cov lus nug koj yuav xav nug koj tus kws phais ua ntej kev phais suav nrog: "Kuv yuav nyob hauv tsev kho mob ntev npaum li cas?" "Kuv yuav ua dab tsi tom qab phais kom rov zoo?" "Kuv puas yuav muaj kev phom sij rau lub sijhawm phais no?" "Kuv puas yuav tsum tsis noj tshuaj ua ntej kuv nkag mus?"
Kauj Ruam 2. Siv tshuaj los kho MCD (kab mob ntau yam Castleman)
Yog tias koj muaj HHV-8-cuam tshuam nrog MCD lossis MCD idiopathic, tham nrog koj tus kws kho mob txog kev kho koj daim CD nrog tshuaj. Lawv tuaj yeem pom zoo ua ke ntawm corticosteroids, tshuaj tiv thaiv kab mob, thiab tshuaj tiv thaiv kab mob los kho koj tus mob. Nyob ntawm seb koj tus mob hnyav npaum li cas (uas koj tus kws kho mob yuav txiav txim siab raws li koj cov tsos mob, kuaj mob, thiab kuaj sim), koj yuav tsum tau mus pw hauv tsev kho mob txhawm rau tshuaj xyuas, tshuaj xyuas ntxiv, thiab kho mob. Kev kho mob ib txwm muaj xws li:
- Siltuximab (Sib). Qhov no yog tus neeg tsim cov tshuaj tiv thaiv kab mob uas tsim los tua cov protein tsis sib xws uas cuam tshuam nrog idiopathic MCD. Cov kev mob tshwm sim suav nrog cem quav, mob taub hau, hnyav dua, thiab caj pas, qhov ncauj, lossis mob plab. Yog tias koj muaj pob khaus lossis kis mob thaum nyob rau ntawm siltuximab, tiv tauj koj tus kws kho mob tam sim.
- Rituximab (Rituxan). Cov tshuaj tiv thaiv kab mob no yog kev kho mob xaiv rau HHV-8-cuam tshuam nrog MCD. Cov kev mob tshwm sim muaj xws li ua daus no, ua npaws, lossis lwm yam tsos mob zoo li txias. Yog tias koj tsis meej pem, kiv taub hau, lossis tsis muaj zog ntawm ib sab ntawm koj lub cev, hu rau koj tus kws kho mob tam sim ntawd.
- Corticosteroids. Cov no feem ntau siv ua ke nrog lwm cov tshuaj los kho MCD. Koj tus kws kho mob yuav txhaj tshuaj rau lawv lossis lawv yuav muab tshuaj rau koj, zoo li Prednisone, kom noj. Cov kev mob tshwm sim tuaj yeem suav nrog nce ntshav qab zib, hloov pauv kev xav, kis kab mob, tsis muaj pob txha, qaug zog, nqaij leeg tsis muaj zog, nce phaus, ua kom lub cev muaj kua, thiab ntshav siab.
- Tshuaj tua kab mob. Cov no tuaj yeem siv los tswj kev kis tus kab mob sib kis uas tuaj yeem pab txhawb rau MCD, xws li HHV-8 lossis HIV.
Koj puas paub?
MCD feem ntau cuam tshuam nrog Human Herpesvirus 8 (HHV-8), uas tuaj yeem ua rau mob qog noj ntshav tsawg tsawg hu ua Kaposi sarcoma. Kaposi sarcoma thiab MCD tuaj yeem tshwm sim ua ke.
Kauj Ruam 3. Saib mus rau kev siv tshuaj kho mob nyuaj rau kho MCD
Rau cov mob hnyav ntawm MCD uas tsis teb rau lwm yam kev kho mob, koj yuav tsum tau mus ntsib kws kho mob. Cov kev kho mob rau MCD zoo ib yam rau cov kev kho mob qog noj ntshav. Koj tus kws kho mob yuav pom zoo ua ke ntawm cov tshuaj kws kho mob, muab rau koj xws li ua tshuaj los yog txhaj tshuaj. Koj tuaj yeem hla dhau lub lis piam ntawm kev kho tshuaj tom qab ob peb lub lis piam so.
- Kev siv tshuaj tua kab mob tuaj yeem ua rau muaj kev phiv ntau yam, suav nrog plaub hau poob, mob qhov ncauj, tsis qab los, xeev siab, ntuav, raws plab, kis kab mob, qaug zog, thiab qaug zog. Nws kuj tseem tuaj yeem ua rau koj muaj peev xwm ua rau tawv nqaij los ntshav. Qhia rau koj pab neeg kho mob paub txog koj cov tsos mob, thiab lawv yuav sau txoj hauv kev los tswj lawv.
- Kev siv tshuaj kho mob yuav zoo tshaj yog tias nws ua ke nrog lwm cov kev kho mob, xws li corticosteroids lossis kho hluav taws xob.
Txoj Kev 3 ntawm 3: Nrhiav Kev Txhawb Nqa thiab Lwm Yam Kev Kho Mob
Kauj Ruam 1. Nrhiav pab pawg txhawb nqa thiab koom haum tshawb fawb
Pab pawg txhawb nqa hauv tebchaws thiab cov koomhaum pab muab kev txhawb siab nrog rau cov ntaub ntawv hais txog kev tshawb fawb thiab kev kho mob tshiab. Thaum CD tsis tshua muaj, muaj cov tes hauj lwm sib txuas uas tuaj yeem pab ua rau koj kov nrog lwm tus uas raug tus kab mob tib yam. Tshawb nrhiav online lossis nug koj tus kws kho mob kom pom zoo cov koom haum tshawb fawb thiab pab pawg uas yuav pab tau koj.
- Tus Kab Mob Castleman Kev Koom Tes Koom Tes koom tes nrog zej zog cov kws tshawb fawb, tsev neeg, thiab cov neeg nrog CD. Lawv tseem muab cov kev hloov tshiab ntawm kev tshawb fawb tsis ntev los no rau tus kab mob.
- RareConnect tswj hwm thoob ntiaj teb, pab txhawb nqa online rau cov uas muaj CD, uas koj tuaj yeem mus ntsib ntawm no:
Kauj Ruam 2. Koom nrog kev sim tshuaj
Vim tias CD tsawg tsawg, cov neeg mob koom nrog hauv kev tshawb fawb tseem ceeb heev rau kev kawm txog tus kab mob thiab tsim kho tshiab. Kev koom tes tshawb fawb tuaj yeem yooj yim xws li teb ob peb nqe lus nug thiab kos npe rau daim ntawv pom zoo kom koj cov ntaub ntawv kho mob tuaj yeem siv rau kev tshawb fawb. Koj tseem tuaj yeem pub ntshav, hnoos qeev, thiab kuaj cov qog ntshav. Thaum kawg, koj tuaj yeem pab dawb koom nrog hauv kev sim tshuaj tshuaj. Castleman Tus Kab Mob Sib Koom Network (CDCN) npaj kev tshawb fawb hauv kab mob Castleman thiab tuaj yeem koom tes nrog koj kev koom tes hauv kev tshawb fawb.
- Tsoomfwv Meskas Lub Tsev Haujlwm Saib Xyuas Kev Noj Qab Haus Huv khaws cov ntaub ntawv ntawm kev sim tshuaj rau CD uas tam sim no nquag siv, nrhiav neeg ua haujlwm, lossis ua tiav. Yog xav paub ntxiv, mus ntsib https://www.clinicaltrials.gov thiab tshawb nrhiav "Castleman disease."
- CDCN khaws cov ntaub ntawv ntawm cov neeg nrog CD los pab tshawb fawb. Los ntawm kev ntxiv koj cov ntaub ntawv thiab kab mob qhia rau ACCELERATE Cov Neeg Sau Npe, koj tuaj yeem pab txhawb rau kev tshawb fawb rau kev kho mob. Ntxiv koj tus kheej rau npe ntawm no:
Kauj Ruam 3. Pub koj cov ntaub so ntswg rau kev tshawb fawb
Lwm txoj hauv kev los pab txhawb rau kev tshawb fawb tshiab yog pub koj cov nqaij cuam tshuam tom qab kuaj mob lossis phais. CDCN tam sim no tswj cov ntaub so ntswg rau kev tshawb fawb. Txhawm rau saib yog tias koj tsim nyog, koj tuaj yeem ua daim ntawv ntawm lawv lub vev xaib ntawm no:
Tswv yim:
Nug koj tus kws kho mob yog tias koj tuaj yeem pub cov ntaub so ntswg uas raug tshem tawm thaum kuaj mob lossis phais kho mob rau lub hom phiaj tshawb fawb. Lawv yuav nug koj kom kos npe rau daim ntawv pom zoo lossis qhia meej meej tias koj xav kom cov qauv coj los siv li cas.
Kauj Ruam 4. Ntseeg hauv koj tsev neeg thiab cov phooj ywg
Koj tus kheej kev txhawb nqa network yuav muaj txiaj ntsig zoo los pab koj kom muaj zog thiab noj qab nyob zoo nyob rau lub sijhawm no. Yog tias koj tab tom tu siab, ntshai, lossis txhawj xeeb, nrhiav ib tus neeg uas koj ntseeg los tham nrog txog cov teeb meem no.
- Yog tias koj tsis muaj ib tus neeg nyob ze koj rau kev txhawb nqa, koj tseem tuaj yeem ncav tes rau lwm tus. Cov chaw teev ntuj tuaj yeem koom tes nrog ib tus neeg los pab koj ua haujlwm txhua hnub yog tias xav tau. Cov tsev kawm ntawv thiab tsev kawm qib siab tuaj yeem tuaj yeem muab kev pabcuam. Koj cov neeg ua haujlwm hauv tsev yuav zoo siab tuaj yeem ua haujlwm qeeb ib ncig ntawm lub chaw haujlwm.
- Nyob ntawm qhov mob hnyav ntawm koj tus kab mob, koj yuav xav tau ib tus neeg los qhia koj caij tsheb mus rau kev teem sijhawm, kev kho mob, thiab tej zaum yuav mus rau tsev kho mob. Nco ntsoov tias koj muaj 1 lossis 2 tus neeg uas tuaj yeem cog lus yuav coj koj mus.
- Yog tias koj muaj kev nyuaj siab, tsis muaj kev cia siab, lossis txhawj xeeb, koj yuav xav hu rau tus kws kho mob muaj ntawv tso cai.
Lub tswv yim
- Kev siv tshuaj kho mob thiab kho hluav taws xob tuaj yeem ua rau xeev siab, ntuav, thiab lwm yam kev phiv. Koj tus kws kho mob tuaj yeem sau ntawv tshuaj los pab koj tswj cov kev mob tshwm sim no.
- Ib txwm qhia rau koj tus kws kho mob txog cov kev mob tshwm sim uas koj tab tom ntsib thaum kho.
- Vim yog qhov nyuaj ntawm CD thiab tsis muaj kev tshawb fawb txog nws, kev kho mob yuav yog nyob ntawm tus neeg mob. Ib txwm ua haujlwm nrog koj tus kws kho mob thiab mloog lawv cov lus qhia rau kev kho mob zoo tshaj rau koj.
- Yog tias koj noj cov vitamins lossis tshuaj ntsuab ntxiv los tswj koj cov tsos mob, nws yog qhov tseem ceeb uas koj qhia rau koj tus kws kho mob. Cov no tuaj yeem cuam tshuam nrog kev phais lossis lwm yam tshuaj.
- CD tuaj yeem tshwm sim rau tib neeg txhua lub hnub nyoog thiab poj niam txiv neej. Txawm li cas los xij, hnub nyoog nruab nrab rau kev kuaj mob UCD yog 35, thiab MCD feem ntau tshwm sim rau tib neeg hauv lawv 50s thiab 60s. MCD feem ntau tshwm sim hauv cov txiv neej ntau dua li poj niam.
Lus ceeb toom
- Cov neeg mob CD muaj qhov pheej hmoo pheej hmoo loj hlob ntawm cov tawv nqaij tsis xws luag hu ua Paraneoplastic Pemphigus. Qhia rau koj tus kws kho mob yog tias koj tau ntsib qhov ua pob khaus lossis mob hauv koj lub qhov ncauj lossis ib ncig ntawm koj daim di ncauj.
- Kev kho mob MCD tuaj yeem ua rau muaj teeb meem hnyav, xws li muaj kev phom sij rau lub neej lossis lub cev tsis ua haujlwm.
- Muaj tus kab mob Castleman tuaj yeem ua rau koj muaj kev pheej hmoo loj hlob ntawm cov qog ntshav qog ntshav.
