Koj tus menyuam puas muaj qog hauv lub hlwb zoo li no? (Diffuse Intrinsic Pontine Glioma - DIPG) Peb puas yuav tham txog qhov no?

Nws yog ib qho ib txwm muaj kev ntxhov siab ntau thaum xav txog koj tus menyuam txoj kev noj qab haus huv. Qee zaum, peb txhawj xeeb heev thaum peb hnov ​​​​​​txog cov kab mob uas cuam tshuam rau cov menyuam yaus. Hnub no, peb yuav tham txog lub qog hauv hlwb uas loj dua me ntsis, tab sis nws yog ib qho tseem ceeb uas yuav tsum paub txog. Nws hu ua diffuse intrinsic pontine glioma, lossis luv luv "DIPG" ("DIPG").

DIPG yog dab tsi? Lub npe no txhais li cas?

Txawm hais tias lub npe no yuav zoo li ntev me ntsis los, kev paub txog nws lub ntsiab lus tuaj yeem muab qee lub tswv yim rau koj txog tus kab mob no. Cia peb saib lub ntsiab lus ntawm nws cov feem.

• Diffuse: Qhov no tsis zoo li ib lub pob nyob rau hauv ib qho chaw. Cov hlwb qog nqaij hlav tau nthuav tawm thiab sib xyaw nrog cov hlwb noj qab haus huv. Nws zoo li thaum koj muab ib tee dej xim rau hauv ib khob dej, nws nthuav dav thoob plaws hauv khob. Yog vim li cas nws thiaj nyuaj heev rau tshem tawm nrog kev phais. Vim tias nws tsis yooj yim sua kom tshem tawm cov hlwb kis no yam tsis ua rau cov khoom noj qab haus huv puas tsuaj.
• Sab hauv: Qhov no nyob hauv tus menyuam lub hlwb. Uas yog, nws txuas nrog nws thiab mus tob rau hauv.
• Pontine: Pontine yog hais txog ib feem ntawm lub hlwb hu ua pons. Qhov pons no yog ib qho chaw tseem ceeb heev. Nws tswj cov yam tseem ceeb hauv peb lub cev xws li ntshav siab, lub plawv dhia, thiab kev ua pa. Tsis yog li ntawd xwb, tab sis nws kuj tswj cov yam xws li kev pom, kev hnov, kev hais lus, thiab kev sib npaug. Yog li qhov no yog ib qho ntawm cov laj thawj vim li cas cov qog '(DIPG)' no txaus ntshai heev.
• Glioma: Glioma yog ib qho mob qog uas tshwm sim thaum cov hlwb glial dhau los ua mob qog noj ntshav. Cov hlwb glial no yog ib hom hlwb uas tiv thaiv cov hlwb hlab ntsha, lossis cov neurons, hauv peb lub paj hlwb hauv nruab nrab (CNS).

Hais yooj yim xwb, DIPG yog ib qho mob qog nqaij hlav phem uas tshwm sim los ntawm cov hlwb glial hauv cov pons, uas yog ib feem ntawm lub hlwb ntawm ib tug menyuam. Nws suav hais tias yog ib qho glioma loj hlob sai, qib siab .

Qhov txawv ntawm DIPG thiab DMG (Diffuse Midline Glioma) yog dab tsi?

Tej zaum koj kuj tau hnov ​​txog `(Diffuse Midline Glioma - DMG)`. Yav dhau los, cov lus `(DIPG)` thiab `(DMG)` tau siv sib pauv. `(DIPG)` kuj yog ib feem ntawm pawg `(DMG)`. Hom `(DMG)` tshwm sim hauv nruab nrab ntawm lub hlwb. Ntawd yog, nyob rau hauv cov chaw zoo li `(Pons)`, `(Thalamus)` thiab `(Spinal Cord)`. Txawm li cas los xij, `(DIPG)` tshwm sim tshwj xeeb hauv thaj chaw `(Pons)`.

Ob leeg puav leej yog cov gliomas qib siab. Txawm li cas los xij, muaj qee qhov sib txawv ntawm ob qho no. Thaum kho koj tus menyuam, koj tus kws kho mob yuav xav txog cov kev sib txawv no los txiav txim siab seb kev kho mob twg zoo tshaj plaws rau koj.

Leej twg thiaj tau DIPG? Nws tshwm sim ntau npaum li cas?

Cov qog no tuaj yeem tshwm sim rau cov menyuam yaus txhua lub hnub nyoog, tsis hais poj niam txiv neej. Txawm li cas los xij, feem ntau lawv raug kuaj pom rau cov menyuam yaus hnub nyoog ntawm 5 thiab 9 xyoos.

Cov neeg laus kuj tuaj yeem mob DIPG, tab sis nws tsis tshua muaj.

Qhov no yeej yog ib qho mob tsis tshua muaj. Txawm tias nyob hauv lub tebchaws zoo li Asmeskas, tsuas muaj 150 txog 300 tus menyuam yaus xwb uas tau kuaj pom tias muaj hom qog no txhua xyoo. Feem ntau cov gliomas uas tshwm sim hauv cov menyuam yaus yog "qib qis", txhais tau tias lawv tuaj yeem kho thiab kho tau. Txawm li cas los xij, tsuas yog li ntawm 10% ntawm cov qog hlwb hauv menyuam yaus yog hom txaus ntshai no hu ua "DIPG".

Cov tsos mob ntawm DIPG yog dab tsi?

Vim tias qhov mob qog no, hu ua "DIPG", loj hlob sai heev, cov tsos mob pib tshwm sim sai. Saib xyuas cov cim no hauv koj tus menyuam:

• Teeb meem ntawm qhov muag: pom kev tsis meej, pom ob sab, txav qhov muag tsis tau, qhov muag poob.
• Mob taub hau: Mob taub hau, tshwj xeeb tshaj yog thaum sawv ntxov. Qee zaum, qhov mob no ploj mus tom qab ntuav.
• Kev nyuaj siab thaum taug kev: Kev nyuaj siab thaum taug kev, tsis muaj zog sib npaug (ataxia), thiab cov leeg nqaij tsis sib haum. Zoo li tsis tuaj yeem tuav koj txhais taw rau hauv av.
• Qaug zog lossis tsis muaj zog ntawm ib sab ntawm lub ntsej muag .
• Nyuaj siab tom thiab nqos zaub mov.
• Zoo li tsis muaj zog ntawm ob txhais ceg . Zoo li ib txhais caj npab poob zog tam sim ntawd lossis nyuaj rau txav ib ceg.
• Xeev siab thiab ntuav.
• Xav tias koj cov lus tsis meej , tsis tuaj yeem hais lus ua ke kom raug (hais lus tsis meej).

Yog tias muaj ib lossis ntau yam ntawm cov tsos mob no tshwm sim sai sai thiab nce ntxiv sai sai, nws yog ib qho tseem ceeb heev uas yuav tsum mus ntsib kws kho mob tam sim ntawd.

Dab tsi ua rau DIPG?

Hais yooj yim xwb, qhov uas tshwm sim hauv DIPG yog tias cov hlwb uas yuav tsum tau loj hlob mus ua cov hlwb glial yuav dhau los ua cov hlwb qog noj ntshav. Cov hlwb qog noj ntshav no ces loj hlob sai thiab tsis tuaj yeem tswj tau.

Tsis zoo li feem ntau cov mob qog noj ntshav, qhov mob no hu ua "DIPG" zoo li tsis muaj feem cuam tshuam nrog cov yam ntxwv ib puag ncig xws li pa luam yeeb lossis hluav taws xob. Yog li ntawd, tseem tsis tau txiav txim siab seb nws puas yog los ntawm qee yam uas niam txiv ua lossis qee yam hauv ib puag ncig.

Txawm li cas los xij, yog tias koj tus menyuam muaj tus mob tsis tshua muaj xws li Li-Fraumeni syndrome, qhov kev pheej hmoo yuav siab dua me ntsis. Tsis tas li ntawd, qee qhov kev hloov pauv caj ces, hu ua kev hloov pauv, hauv cov hlwb tuaj yeem ua rau DIPG. Tam sim no nws tau pom tias kev hloov pauv hauv cov protein hu ua H3K27M tuaj yeem ua rau cov hlwb glial no ua mob qog noj ntshav.

Yuav kuaj mob DIPG li cas?

Feem ntau, yuav tsum tau kuaj ib qho nqaij me me, uas yog cov qauv ntawm cov nqaij uas raug coj mus kuaj mob qog noj ntshav. Txawm li cas los xij, qhov no tsis yog ib txwm ua tau rau DIPG. Qhov no yog vim tias qhov chaw ntawm cov qog nqaij hlav rhiab heev. Yog li ntawd, cov kws kho mob feem ntau kuaj mob DIPG los ntawm kev saib cov tsos mob ntawm tus menyuam nrog rau kev tshawb fawb tshwj xeeb.

• Kev kuaj mob MRI (Magnetic Resonance Imaging):Daim MRI tuaj yeem tsim cov duab meej heev ntawm tus menyuam lub qog. Nws kuj tseem tuaj yeem txiav txim siab seb tus qog puas tau kis mus dhau qhov pons. Tus qog DIPG zoo li txawv me ntsis ntawm MRI. Tus kws kho mob uas muaj kev paub dhau los tuaj yeem paub qhov txawv ntawm nws los ntawm lwm cov qog hauv lub hlwb.
• Kev Siv Tshuaj Ntsuam Xyuas Stereotactic: Qee zaum, yog tias ua tau li ntawd, tus kws kho mob yuav siv cov cuab yeej me me, nyias zoo li lub raj me me los kuaj ib daim qog me me (kev kuaj mob). Txawm li cas los xij, feem ntau, kev siv ib daim nqaij ntawm cov pons hauv lub hlwb muaj kev pheej hmoo heev vim nws tuaj yeem ua rau lub hlwb puas tsuaj. Yog tias koj tab tom kuaj mob DIPG, nws tsuas yog yuav tsum ua hauv tsev kho mob uas ua hom kev kho mob no tas li thiab muaj kev paub txog thaj chaw ntawd.

Yuav kho DIPG li cas?

Qhov no tu siab me ntsis, tab sis cov kev kho mob tam sim no tsis tuaj yeem kho tau tag nrho '(DIPG)'. Txawm li cas los xij, cov kev kho mob no tuaj yeem ua rau tus menyuam lub neej ntev dua ib ntus, txo cov tsos mob thiab muab kev pab rau tus menyuam. Lub hlwb qia yog qhov chaw ua los ntawm cov hlab ntsha uas tswj cov haujlwm tseem ceeb hauv peb lub cev. Yog li ntawd, yog tias koj sim tshem tawm cov qog nqaij hlav los ntawm kev phais, cov qauv hlab ntsha tseem ceeb no yuav raug puas tsuaj.

Yog li ntawd, cov kws kho mob pom zoo kom siv lwm yam kev kho mob uas tsis yog phais:

• Kev kho mob hluav taws xob: Qhov no yog kev kho mob tseem ceeb rau (DIPG). Hauv qhov no, lub tshuab siv lub teeb hluav taws xob los rhuav tshem cov hlwb qog nqaij hlav. Nws kuj sim txo qhov kev puas tsuaj rau cov ntaub so ntswg noj qab haus huv ib puag ncig. Kev kho mob hluav taws xob ua rau cov qog nqaij hlav me me, tua cov hlwb qog nqaij hlav, thiab txo cov tsos mob. Koj tus menyuam yuav tau txais kev kho mob hluav taws xob txhua hnub rau li rau lub lis piam.
• Cov tshuaj Corticosteroids: Koj tus kws kho mob yuav muab ib hom tshuaj hu ua corticosteroids rau koj ua ntej lossis tom qab koj tus menyuam txoj kev kho mob hluav taws xob. Cov tshuaj no tuaj yeem pab txo qhov o ntawm lub hlwb thiab pab tswj cov tsos mob. Lawv kuj tseem tuaj yeem pab txo qhov o tom qab kev kho mob hluav taws xob. Txawm li cas los xij, cov tshuaj corticosteroids tuaj yeem muaj cov kev mob tshwm sim. Cov no suav nrog kev noj mov ntau ntxiv, qhov hnyav nce, thiab kev hloov pauv ntawm lub siab. Tham nrog koj tus kws kho mob kom nkag siab txog cov txiaj ntsig thiab kev pheej hmoo ntawm cov tshuaj no.
• Kev Kho Mob Siv Tshuaj Kho Mob: Kev kho mob zoo li kev siv tshuaj kho mob rau cov mob qog noj ntshav feem ntau tsis zoo rau DIPG. Txawm li cas los xij, qee zaum koj tus kws kho mob yuav pom zoo kom koj tus menyuam koom nrog kev sim tshuaj uas muab kev kho mob siv tshuaj kho mob thiab kev kho mob hluav taws xob ua ke.
• Kev kho mob rau cov neeg mob uas mob hnyav:Cov kws tshaj lij saib xyuas kev mob nkeeg (palliative care professionals) tuaj yeem ua haujlwm nrog koj thiab koj tus kws kho mob los tsim ib txoj kev npaj saib xyuas uas ua rau koj tus menyuam lub neej zoo tshaj plaws. Lawv tuaj yeem muab kev txhawb nqa kho mob, kev puas siab puas ntsws, thiab kev ntseeg uas koj, koj tus menyuam, thiab koj tsev neeg xav tau thaum koj muaj tus kab mob zoo li DIPG.

Koj tus kws kho mob kuj tseem yuav hais kom koj tus menyuam mus koom kev sim tshuaj . Kev sim tshuaj yog kev tshawb fawb uas sim seb kev kho mob tshiab muaj kev nyab xeeb thiab ua tau zoo npaum li cas. Cov kws tshawb fawb tau txheeb xyuas qee yam ntxwv ntawm cov hlwb qog noj ntshav (DIPG). Kev kho mob tshiab uas tsom mus rau cov yam ntxwv ntawd - piv txwv li , kev kho mob tsom mus rau molecular thiab kev kho mob tiv thaiv kab mob - yuav muaj los ntawm kev sim tshuaj.

Piv txwv li, cov kws tshawb fawb paub tias ntau lub hlwb mob qog noj ntshav muaj kev hloov pauv hu ua (H3K27M) hauv cov noob "DIPG". Cov kev kho mob tshiab, kev sim uas tsom mus rau cov hlwb mob qog noj ntshav nrog qhov kev hloov pauv no (thiab lwm yam) twb tau tsim thiab sim hauv kev sim tshuaj.

Puas kho tau DIPG?

Tsis yog, Diffuse Intrinsic Pontine Glioma (DIPG) tsis tuaj yeem kho tau. Kev kho mob zoo tshaj plaws tam sim no yog kev siv hluav taws xob los kho. Kev siv hluav taws xob los kho DIPG tuaj yeem ua rau tus menyuam lub neej ntev dua thiab ua rau cov tsos mob thiab lub neej zoo dua ib ntus. Xav tau kev kho mob tshiab dua, zoo dua los txhim kho qhov kev kwv yees ntawm tus mob qog noj ntshav loj no.

Ib tug me nyuam uas muaj DIPG yuav muaj sia nyob tau ntev npaum li cas?

Kuv paub tias qhov no nyuaj rau hnov. Yog tsis muaj kev kho mob, feem ntau cov menyuam yaus nyob tau li rau lub hlis tom qab kuaj pom. Kev kho mob hluav taws xob feem ntau tuaj yeem ntev lub sijhawm no mus txog cuaj txog kaum ib lub hlis. Tsawg dua 10% ntawm cov menyuam yaus nyob dhau ob xyoos. Nws yog ib qho ib txwm muaj kev tu siab thaum koj hnov ​​​​​​cov ntaub ntawv no, tab sis nws yog ib qho tseem ceeb uas yuav tsum nco ntsoov tias txhua tus menyuam txawv.

Kuv yuav tsum nug tus kws kho mob li cas?

Ua haujlwm nrog koj tus kws kho mob kom nkag siab txog koj tus menyuam txoj kev npaj kho mob thiab cov yam uas yuav cuam tshuam rau lawv lub neej yav tom ntej. Tsis txhob ntshai nug cov lus nug uas koj muaj. Nov yog qee cov lus nug uas koj tuaj yeem nug:

• Koj pom zoo kom muaj kev kho mob dab tsi? Peb yuav xav tau dab tsi ntawm lawv?
• Kuv tus menyuam yuav tsum tau kev kho mob ntau npaum li cas?
• Kuv tus menyuam yuav tsum tau tuaj ntsib kws kho mob ntau npaum li cas los saib xyuas seb tus mob qog noj ntshav puas nce qib?
• Peb yuav tswj cov kev mob tshwm sim ntawm kev kho mob qog noj ntshav li cas?
• Koj puas tuaj yeem txuas peb mus rau cov kev pabcuam saib xyuas palliative thiab cov pab pawg txhawb nqa?
• Puas muaj kev tshawb fawb tshiab lossis kev sim tshuaj kho mob uas kuv tus menyuam tuaj yeem koom nrog?

Thaum kawg, tej yam yuav tsum nco ntsoov (Cov Lus Coj Mus Tsev)

Kev nrhiav pom tias koj tus menyuam muaj Diffuse Intrinsic Pontine Glioma (DIPG) yog ib qho ntawm cov yam nyuaj tshaj plaws uas koj tuaj yeem hnov ​​​​​​ua niam txiv. Qhov mob, kev ntshai, thiab kev ntxhov siab uas koj hnov ​​​​​​tuaj yeem ua rau koj ntxhov siab heev. Tab sis nco ntsoov tias koj tsis nyob ib leeg hauv lub sijhawm no.

Thaum koj txiav txim siab txog kev kho mob rau lub hlis tom ntej, siv txhua yam kev pab thiab cov peev txheej uas muaj rau koj. Tham nrog koj tus menyuam cov kws kho mob txog yam uas yuav tshwm sim nrog tus kab mob no. Yog tias koj ua tau, hu rau cov kws tshaj lij uas muab kev saib xyuas palliative. Thov kev pab los ntawm cov phooj ywg thiab tsev neeg. Qhov tseem ceeb tshaj plaws, nyob twj ywm nrog koj tus menyuam. Tham nrog nws, ua si nrog nws, thiab muab kev hlub rau nws. Qhia rau nws paub tias koj nrog nws txhua kauj ruam ntawm txoj kev.

Nyob rau lub sijhawm nyuaj no, nws yog ib qho tseem ceeb uas yuav tsum xav txog koj tus kheej thiab saib xyuas koj lub hlwb kom noj qab haus huv. Yog tias koj nyob ruaj khov, koj tus menyuam yuav muaj zog thiab. Koj tsis nyob ib leeg, peb txhua tus nrog koj.

` Diffuse intrinsic pontine glioma, DIPG, mob qog noj ntshav hauv hlwb, mob qog noj ntshav thaum yau, pons, kev kho mob hluav taws xob, kev kho mob palliative