Kodi mwana wanu ali ndi chotupa cha muubongo chonga ichi? (Diffuse Intrinsic Pontine Glioma - DIPG) Kodi tikambirane za izi?

Ndizachibadwa kumva nkhawa kwambiri tikamaganizira za thanzi la mwana wanu. Nthawi zina, timada nkhawa kwambiri tikamva za matenda omwe amakhudza ana. Lero, tikambirana za chotupa cha muubongo chomwe ndi chachikulu pang'ono, koma ndikofunikira kuchidziwa. Chimatchedwa diffuse intrinsic pontine glioma, kapena ``DIPG'' mwachidule.

Kodi DIPG ndi chiyani? Dzinali limatanthauza chiyani?

Ngakhale dzinali lingawoneke lalitali pang'ono, kudziwa tanthauzo lake kungakuthandizeni kudziwa bwino matendawa. Tiyeni tiwone tanthauzo la ziwalo zake.

• Kufalikira: Izi sizili ngati chotupa pamalo amodzi. Maselo a khansa amafalikira ndikusakanikirana ndi maselo athanzi. Zili ngati mukayika dontho la utoto mu kapu yamadzi, limafalikira mu galasi lonse. Ndicho chifukwa chake zimakhala zovuta kuchotsa ndi opaleshoni. Chifukwa n'zosatheka kuchotsa maselo ofalikira awa popanda kuwononga ziwalo zathanzi.
• Chiyambi: Izi zili mkati mwa ubongo wa mwana. Ndiko kuti, zimalumikizidwa nazo ndipo zimalowa mkati mwa ubongo.
• Pontine: Pontine amatanthauza gawo la ubongo lotchedwa pons. Pons iyi ndi malo ofunikira kwambiri. Imalamulira zinthu zofunika kwambiri m'thupi lathu, monga kuthamanga kwa magazi, kugunda kwa mtima, ndi kupuma. Sikuti zokhazo, komanso imalamulira zinthu monga kuona, kumva, kulankhula, ndi kulinganiza bwino. Chifukwa chake ichi ndi chimodzi mwa zifukwa zomwe zotupa za `(DIPG)` izi zilili zoopsa kwambiri.
• Glioma: Glioma ndi chotupa chomwe chimayamba maselo a glial akakhala khansa. Maselo a glial awa ndi mtundu wa selo lomwe limateteza maselo amitsempha, kapena ma neuron, mu dongosolo lathu lapakati la mitsempha (CNS).

Mwachidule, DIPG ndi chotupa choipa chomwe chimachokera ku maselo a glial omwe ali mu pons, gawo la ubongo wa mwana. Chimaonedwa ngati glioma yomwe ikukula mofulumira komanso yapamwamba .

Kodi kusiyana pakati pa DIPG ndi DMG (Diffuse Midline Glioma) ndi kotani?

Mwina munamvapo za `(Diffuse Midline Glioma - DMG)`. Kale, mawu akuti `(DIPG)` ndi `(DMG)` ankagwiritsidwa ntchito mosinthana. `(DIPG)` ndi a gulu la `(DMG)`. Mtundu wa `(DMG)` umayamba pakati pa ubongo. Ndiko kuti, m'malo ngati `(Pons)`, `(Thalamus)` ndi `(Spinal Cord)`. Komabe, `(DIPG)` imayamba makamaka m'dera la `(Pons)`.

Zonsezi ndi matenda a glioma apamwamba kwambiri. Komabe, pali kusiyana pakati pa awiriwa. Dokotala wanu akamachiritsa mwana wanu, adzaganizira kusiyana kumeneku kuti asankhe chithandizo chomwe chili chabwino kwa inu.

Ndani amalandira DIPG? Kodi ndi yofala bwanji?

Zotupa zimenezi zimatha kufalikira mwa ana a msinkhu uliwonse, mosasamala kanthu za jenda. Komabe, nthawi zambiri zimapezeka mwa ana azaka zapakati pa 5 ndi 9.

Akuluakulu amathanso kukhala ndi DIPG, koma nthawi zambiri zimakhala zocheperako.

Izi ndi vuto losowa kwambiri. Ngakhale m'dziko ngati America, ana 150 mpaka 300 okha ndi omwe amapezeka ndi chotupa chamtunduwu chaka chilichonse. Matenda ambiri a glioma omwe amakula mwa ana ndi "otsika kwambiri", zomwe zikutanthauza kuti amatha kuchiritsidwa ndikuchiritsidwa. Komabe, pafupifupi 10% yokha ya zotupa za muubongo za ana ndi mtundu woopsa uwu wotchedwa ``DIPG''.

Kodi zizindikiro za DIPG ndi ziti?

Chifukwa chotupa ichi, chotchedwa ``DIPG'', chimakula mofulumira kwambiri, zizindikiro zimayamba kuonekera mofulumira. Yang'anirani zizindikiro izi mwa mwana wanu:

• Mavuto a maso: kusawona bwino, kuona zinthu ziwiri, mayendedwe osalamulirika a maso, zikope zopindika.
• Mutu: Mutu, makamaka m'mawa. Nthawi zina, ululuwu umatha pambuyo posanza.
• Mavuto oyenda: Kuvutika kuyenda, kulephera kukhazikika bwino (ataxia), komanso kuchepa kwa mgwirizano wa minofu. Monga kulephera kuyika mapazi anu pansi.
• Kufooka kapena kufooka mbali imodzi ya nkhope .
• Kuvuta kutafuna ndi kumeza chakudya.
• Kumva kufooka m'miyendo . Kumamveka ngati kutayika kwa mphamvu mwadzidzidzi m'dzanja kapena kuvutika kusuntha mwendo.
• Kusanza ndi kusanza.
• Kumva ngati kuti mawu anu ndi osamveka bwino , osatha kulumikiza bwino mawu anu (mawu osamveka bwino).

Ngati chimodzi kapena zingapo mwa zizindikirozi zikuwonekera mwadzidzidzi ndikuwonjezeka mofulumira, ndikofunikira kwambiri kukaonana ndi dokotala nthawi yomweyo.

Kodi n’chiyani chimayambitsa DIPG?

Mwachidule, zomwe zimachitika mu DIPG ndikuti maselo omwe akuyenera kukhala maselo a glial amakhala maselo a khansa. Kenako maselo a khansa amakula mwachangu komanso mosalamulirika.

Mosiyana ndi khansa zambiri, vuto ili lotchedwa ``DIPG'' silikuwoneka kuti likugwirizana ndi zinthu zomwe zimayambitsa chilengedwe monga utsi wa ndudu kapena kuwala kwa dzuwa. Izi zikutanthauza kuti, sizinadziwikebe ngati limayamba chifukwa cha zomwe makolo amachita kapena china chake m'chilengedwe.

Komabe, ngati mwana wanu ali ndi vuto losowa kwambiri monga matenda a Li-Fraumeni, chiopsezo chake chingakhale chachikulu pang'ono. Komanso, kusintha kwina kwa majini, kotchedwa kusintha kwa majini, m'maselo kungayambitse DIPG. Tsopano zapezeka kuti kusintha kwa puloteni yotchedwa H3K27M kungayambitse maselo a glial kukhala khansa.

Kodi matenda a DIPG amapezedwa bwanji?

Kawirikawiri, biopsy, yomwe ndi chitsanzo cha minofu yomwe imatengedwa kuti iyesedwe ngati ili ndi khansa, imafunika. Komabe, izi sizimachitika nthawi zonse pankhani ya DIPG. Izi zili choncho chifukwa malo omwe ali ndi chotupacho ndi osavuta kuzindikira. Chifukwa chake, madokotala nthawi zambiri amazindikira DIPG poyang'ana zizindikiro za mwanayo pamodzi ndi maphunziro apadera ojambula.

• Kujambula kwa MRI (Maginito Resonance Imaging):MRI imatha kupanga zithunzi zomveka bwino za chotupa cha mwana. Ingathenso kudziwa ngati chotupacho chafalikira kupitirira pons. Chotupa cha DIPG chimawoneka mosiyana pang'ono pa MRI. Katswiri wodziwa bwino za radiation amatha kuchisiyanitsa ndi zotupa zina za ubongo.
• Kuyeza kwa Stereotactic Biopsy: Nthawi zina, ngati kuli kotetezeka kutero, dokotala angagwiritse ntchito chida chaching'ono, chopyapyala chofanana ndi chubu kuti atenge chidutswa chaching'ono cha chotupacho kuti akachiyese (biopsy). Komabe, nthawi zambiri, kutenga chidutswa cha minofu kuchokera ku pons mu ubongo kumakhala koopsa kwambiri chifukwa kumatha kuwononga ubongo. Ngati mukuchitidwa biopsy ya DIPG, izi ziyenera kuchitidwa kuchipatala chomwe chimachita njirayi nthawi zonse komanso chili ndi luso m'derali.

Kodi DIPG imachiritsidwa bwanji?

Izi n'zomvetsa chisoni pang'ono kumva, koma mankhwala omwe alipo pano sangachiritse kwathunthu `(DIPG)`. Komabe, mankhwala awa amatha kutalikitsa moyo wa mwana kwa kanthawi, kuchepetsa zizindikiro ndikupatsa mwana mpumulo. Ubongo ndi malo opangidwa ndi minofu ya mitsempha yomwe imayang'anira ntchito zofunika kwambiri m'thupi lathu. Chifukwa chake ngati muyesa kuchotsa chotupacho mwa opaleshoni, mitsempha yofunikayi ikhoza kuwonongeka.

Chifukwa chake, madokotala amalimbikitsa njira zina zosagwiritsa ntchito opaleshoni:

• Chithandizo cha radiation: Ichi ndiye chithandizo chachikulu cha (DIPG). Pachifukwa ichi, makina amagwiritsa ntchito kuwala kwa dzuwa kuwononga maselo a khansa. Amayesanso kuchepetsa kuwonongeka kwa minofu yathanzi yozungulira. Chithandizo cha radiation chimachepetsa chotupa, chimapha maselo a khansa, komanso chimachepetsa zizindikiro. Mwana wanu mwina adzalandira chithandizo cha radiation tsiku lililonse kwa milungu isanu ndi umodzi.
• Corticosteroids: Dokotala wanu angakupatseni mtundu wa mankhwala otchedwa corticosteroids mwana wanu asanalandire chithandizo cha radiation kapena atalandira chithandizo cha radiation. Mankhwalawa angathandize kuchepetsa kutupa muubongo ndikuthandizira kuchepetsa zizindikiro. Angathandizenso kuchepetsa kutupa atalandira chithandizo cha radiation. Komabe, corticosteroids ikhoza kukhala ndi zotsatirapo zoyipa. Izi zikuphatikizapo kudya kwambiri, kunenepa kwambiri, komanso kusintha kwa maganizo. Lankhulani ndi dokotala wanu kuti mumvetse ubwino ndi zoopsa za mankhwalawa.
• Chemotherapy: Mankhwala monga chemotherapy a khansa yofala si othandiza kwambiri pa DIPG. Komabe, nthawi zina dokotala wanu angakulangizeni kuti mutenge nawo mbali mu mayesero azachipatala omwe amaphatikiza chemotherapy ndi radiation therapy.
• Chisamaliro cha kupweteka kwa mutu:Akatswiri osamalira odwala omwe ali ndi vuto la kupweteka kwa mutu angagwire ntchito ndi inu ndi dokotala wanu kuti apange dongosolo losamalira lomwe lingathandize kwambiri moyo wa mwana wanu. Akhoza kupereka chithandizo chamankhwala, chamaganizo, komanso chauzimu chomwe inu, mwana wanu, ndi banja lanu mukufunikira mukakumana ndi matenda monga DIPG.

Dokotala wanu angakulimbikitseninso kuti mwana wanu alembetsedwe mu mayeso azachipatala . Mayeso azachipatala ndi kafukufuku amene amayesa momwe mankhwala atsopano alili otetezeka komanso ogwira mtima. Ofufuza apeza makhalidwe enaake a maselo a khansa (DIPG). Mankhwala atsopano omwe amakhudza makhalidwe amenewo - mwachitsanzo , mankhwala opangidwa ndi maselo ndi chithandizo cha chitetezo chamthupi - angapezeke kudzera mu mayeso azachipatala.

Mwachitsanzo, ofufuza akudziwa kuti maselo ambiri a khansa ali ndi kusintha kwa majini kotchedwa (H3K27M) mu jini ya ``DIPG''. Mankhwala atsopano, oyesera omwe amalimbana ndi maselo a khansa ndi kusintha kumeneku (ndi ena) akupangidwa kale ndikuyesedwa m'mayesero azachipatala.

Kodi DIPG ingachiritsidwe?

Ayi, Diffuse Intrinsic Pontine Glioma (DIPG) sichitha kuchiritsidwa. Chithandizo chothandiza kwambiri chomwe chilipo pano ndi chithandizo cha radiation. Chithandizo cha radiation cha DIPG chingatalikitse moyo wa mwana ndikuwonjezera kwakanthawi zizindikiro ndi moyo wabwino. Mankhwala atsopano komanso othandiza kwambiri amafunika kuti apititse patsogolo chitukuko cha khansa yoopsayi.

Kodi mwana amene ali ndi DIPG angakhale ndi moyo kwa nthawi yayitali bwanji?

Ndikudziwa kuti izi n'zovuta kumva. Popanda chithandizo, ana ambiri amakhala ndi moyo kwa miyezi isanu ndi umodzi atapezeka ndi matendawa. Chithandizo cha radiation nthawi zambiri chimatha kupitilira nthawi imeneyi mpaka miyezi isanu ndi inayi mpaka khumi ndi umodzi. Ana osakwana 10% amakhala ndi moyo wopitilira zaka ziwiri. Ndizachilendo kumva chisoni mukamva ziwerengerozi, koma ndikofunikira kukumbukira kuti mwana aliyense ndi wosiyana.

Ndi mafunso ati omwe ndiyenera kufunsa dokotala?

Gwirani ntchito limodzi ndi dokotala wanu kuti mumvetse dongosolo la chisamaliro cha mwana wanu komanso zinthu zomwe zingakhudze tsogolo lake. Musaope kufunsa mafunso aliwonse omwe muli nawo. Nazi mafunso ena omwe mungafunse:

• Kodi mumalimbikitsa chithandizo chanji? Kodi tingayembekezere chiyani kuchokera kwa iwo?
• Kodi mwana wanga adzafunika chithandizo kangati?
• Kodi mwana wanga amafunika kubwera kangati kudzaonana ndi dokotala kuti aone momwe khansa ikuyendera?
• Kodi tingatani kuti tithane ndi zotsatirapo zoyipa za mankhwala a khansa?
• Kodi mungathe kutilumikiza ku mautumiki othandizira odwala ovutika maganizo komanso magulu othandizira?
• Kodi pali kafukufuku watsopano kapena mayesero azachipatala omwe mwana wanga angatenge nawo mbali?

Pomaliza, zinthu zoti muzikumbukira (Uthenga Wopita Nawo Kunyumba)

Kupeza kuti mwana wanu ali ndi Diffuse Intrinsic Pontine Glioma (DIPG) kungakhale chimodzi mwa zinthu zovuta kwambiri zomwe mungamve ngati kholo. Ululu, mantha, ndi nkhawa zomwe mukumva zingakhale zovuta kwambiri. Koma kumbukirani kuti simuli nokha panthawiyi.

Pamene mukupanga zisankho za chithandizo m'miyezi ikubwerayi, gwiritsani ntchito thandizo lonse ndi zinthu zomwe zilipo kwa inu. Kambiranani momasuka ndi madokotala a mwana wanu za zomwe mungayembekezere ndi matendawa. Ngati mungathe, funsani akatswiri omwe amapereka chithandizo chamankhwala ochepetsa ululu. Pemphani thandizo kwa anzanu ndi abale anu. Koposa zonse, khalani olumikizana ndi mwana wanu. Lankhulani naye, sewerani naye, ndipo mupatseni chikondi. Muuzeni kuti muli naye panjira iliyonse.

Mu nthawi zovuta izi, ndikofunikira kuganizira za inu nokha ndikusamalira thanzi lanu la maganizo. Ngati mukhala olimba, mwana wanu nayenso adzakhala wolimba. Simuli nokha, tonse tili nanu.

` Kufalikira kwa pontine glioma, DIPG, khansa ya muubongo, khansa ya ana, pons, chithandizo cha radiation, chisamaliro chochepetsa ululu