2022 noqon kara: Matthew waa bukaan 27 jir ah Lymphoblastic Lymphoblastic Leukemia kaas oo laga helay 2015. Nasiib darro, daaweynta caadiga ah ee daaweynta kemotherabi iyo tallaalka dhuuxa lafta ayaa ku guuldareystay. Waxa uu u qalmay tijaabo caafimaad oo ku taal London's Kings College Hospital, halkaas oo uu ku maray Daaweynta CAR-T. Matthew waxa uu wadaagayaa sheekadiisa gaarka ah ee ku saabsan sida daawayntan muhiimka ah u badbaadisay noloshiisa. "Waxaan ka walaacsanahay in unugyada qaraxu ay ka kooban yihiin ku dhawaad kala bar dhuuxaaga." Ka dib marka la maro UKALL14 induction, laba wareeg oo calan-Ida ah, iyo deeq bixiye aan xidhiidh la lahayn dhuuxa lafta ku-deeqaha si loogu daweeyo leukemia kaaga ba'an, taasi sax maaha warka aad rabto inaad maqasho.
Si kastaba ha ahaatee, kuwanu waxay ahaayeen erayadii aan maqlay. Halkii aan xanaaqi lahaa, waxaan isla markiiba bilaabay inaan ka fikiro sidii aan u xallin lahaa caqabadan. Iyadoo dadka hareerahayga ah ay yaabban yihiin oo ay xanaaqsan yihiin, waxaan taas u qaatay caqabad.
Hormoodka mooyaane Daaweynta CAR-T Waxaan wax badan ka maqlay saxaafadda, waan iska indho-tiray dhammaan xulashooyinkaygii ka dib markii la ii soo bandhigay. Tani ma ahayn kaliya daawaynta aan rabay, laakiin sidoo kale waxay ahayd daawaynta aan u baahnaa! Arrinka keliya ayaa ahaa in ay weli ku jirto marxaladda koowaad iyo laba tijaabo oo bukaan-socod ah, kuwaas oo intooda badan ay joogeen Mareykanka oo ay ku kaceen ku dhawaad £500,000, kuwaas oo dhammaantood ay ahayd in uu bixiyo bukaanku!
I was recommended to two doctors who were conducting clinical trials, but neither of them were appropriate for me. Meanwhile, I was taking vincristine and prednisone to keep the disease at bay. My consultant worked hard to put together a protocol and ensure the proper care was in place for me to receive blinatummab, but it was not to be.
I found a link to the Leukemia & Lymphoma Society in the United States after doing a lot of research and contacting many relevant people. I went to the website and discovered that there was an immediate chat facility. I typed in a message describing my condition and my desire for CAR-T therapy. I received a response within a few minutes, much to my amazement. A trial was running in London, according to the message, and there was a link to the experiment on the clinical trials website! It was unbelievable!
Daraasaddu waxay xarunteedu tahay London, waxaanan u muuqday inaan xaq u leeyahay iyada oo ku saleysan sharraxaadda. Waan gartay magaca dhakhtarka hogaanka ah oo iimayl u diray.
Waxaan qoray iimaylka galab Sabti ah, markaa maan fileyn jawaab ilaa usbuuca soo socda, laakiin aad ayaan ula yaabay inaan helo mid isla maalintaas ah! Waxay sheegtay inaan u muuqday inaan ku habboonahay, laakiin dammaanad aan la bixin karin, iyo in daawadu ay ahayd tijaabo aad u tijaabo ah sababtoo ah waxay shaqaaleysiisay unugyo T-deeq ah oo aan ahayn daweyno kale.
Waxa la iga qaaday dhuuxa lafta-biopsy iyo baadhitaano dhiig oo kala duwan si loo xaqiijiyo in aan la kulmay shuruudaha daraasadda ka dib wadahadal dhex maray dhakhtarka tijaabada ah iyo khabiiradayda. Dhammaan imtixaanada ayaa muujiyay inaan u qalmo tijaabada, taas oo i siisay nafis weyn.
Laakiin waxaa jiray mid kale oo lagu turunturoodo. Ka hortagga fangaska ayaa la i siiyay markii aan ku jiray vincristine iyo prednisone. Mid ka mid ah akhrinta enzymamka beerkaygu wuxuu ka sare maray xadka la oggol yahay tijaabada. Nasiib darro, waxaan waayay bartaydii, laakiin heerarka enzyme beerkaygu way fiicnaadeen labada toddobaad ee soo socda, waxaanan nasiib u yeeshay in boos kale la ii soo bandhigo.
Markii aan imid Isbitaalka Kings College ee London, waxa aan qaatay shan maalmood oo kiimoterabi ah si aan jidhkayga ugu diyaariyo unugyada CAR-T. Intaa ka dib, waxaan qaatay maalin fasax ah ka hor inta aan la helin unugyada maalinta ku xigta. Waxay ii ahayd daqiiqad cajiib ah ka dib dhammaan dhismihii. Markii aan daawaday unugyadaas lagu duray khadka PICC, waxaan dareemay rajo badan oo ah inay kaliya noqon karaan furaha dib u soo celinta noloshayda.
Ma jirin wax raad ah oo dhaqdhaqaaq ah oo ka yimid unugyada qiyaastii hal toddobaad. Kadib, qiyaastii hal usbuuc ka dib faleebada, waxaan lahaa qandho. Kaliya paracetamol ayaa awooday inuu yareeyo qandhada, taas oo socotay dhowr maalmood. Markii uu heerkulku bilaabay in uu kor u kaco markii paracetamolku uu gabaabsi noqday, waxaan xusuustaa in ay dhib igu ahayd laakiin aan loo adkaysan karin.
Ka dib markii uu xanuun ka dareemay caloosha hoose maalmo ka dib, waxaa la ii gudbiyay ultrasound. Waxaan ku dhacay xanuunka loo yaqaan 'appendicitis', qof walba wuu yaabay! Waxaan ahaa dhiig-yaraan, neutropenic, waxaana lahaa tiro platelet ah oo hooseeya waqtigan, markaa qalliinku wuxuu ahaa mid khatar ah, laakiin lifaaqa dillaacay sidoo kale ma fiicneyn.
Dhakhaatiirta qalliinka iyo takhaatiirta dhiig-baxa ayaa wada sheekaysi kooban yeeshay. Hematology waxa ay rabeen in ay i siiyaan antibiyootik si ay u eegaan bal in ay ka caawinayso lifaaqayga in ay degto sababtoo ah waxa ay u malaynayeen in ay tahay waxyeelo ka soo gaadhay unugyada CAR-T, laakiin dhakhaatiirta qaliinka ayaa rabey in ay qalaan.
Waxa la ii wareejiyay daryeelka degdega ah. Waxa aan xasuustaa in aan halkaa u tagay diirimaad aad u kulul oo aan isku dayay in aan ku qaboojiyo tuwaalo warqad qoyan. Waan seexday markii aan imid daryeelka degdega ah, anigoo si buuxda u sugayay inaan soo tooso dhawr saacadood gudahood iyadoo heerkulku kor u kacayo. Heerkulkaygu, si kastaba ha ahaatee, wuxuu ahaa mid caadi ah. Dhakhaatiirtu waxay la yaabeen markay ogaadeen inaan heerkulku iga sii dhammaanayn iyo in raaxo-darrada dhinacayga ka baxday markay ii yimaadeen subaxdii dambe; Waxaan sameyn lahaa soo kabasho mucjiso ah!
Dhawr maalmood ka dib ayaa la iga soo daayay daryeel halis ah. Waxa aan finan ka soo baxay dhabarka gacantayda muddo ku dhow toddobaad ka dib. Dhawr maalmood oo kale ka dib, finanku waxa ay bilaabeen in ay ku fidaan jidhkayga oo dhan. Kareemyada isteeroodhka ayaa loo qoray, laakiin uma eka inay wax badan ku caawinayaan. Aad ayaan ugu raaxaysnayn finan ka soo baxay dartii, wayna igu adkayd in aanan xoqin.
Waxaan ogaaday in aagga hoose ee dhabarkaygu uu bararay oo waxaan dareemay dareere ka buuxa usbuuc dhammaadka toddobaadka. Waxaan wacay takhtarka ku takhasusay dhiig-baxa, kaasoo igu taliyay inaan aado A&E. Waxa la i dhigay cusbitaalka ka dib markii uu dhakhtar baadhay, maalmo yar uun ka hor wakhtigii la igu tallaali lahaa dhuuxa lafta labaad. Waxa la i siiyay steroids afka laga qaato, taas oo ka caawisay yaraynta finanka.
Ugu dambayntii waxaan awooday inaan ku laabto guriga ka dib markii dhuuxa lafo kale oo dhib badan la igu beeray. Tan iyo markaas, waxaan sii waday inaan soo celiyo caafimaadkayga maskaxeed iyo jireed iyo firfircoonidayda. Waxaan nasiib u yeeshay inaan iska ilaaliyo infekshannada muhiimka ah ilaa 11 bilood kadib tallaalka labaad, markii aan helay caabuq laabta fangas ah oo ii baahday inaan ku laabto isbitaalka 10 maalmood. Taas ka sokow, waxaan sii waday dib u dhiska noloshayda, ku soo laabtay shaqada, bilaabay jimicsiga, iyo helitaanka caadiga ah ee cusub, kaas oo ka duwan kii hore laakiin si la mid ah fantastic!
Ugu dambayntii, waxaan rabaa inaan u mahadceliyo qof kasta oo lagu sheegay sheekadan. Qof kasta oo i caawiyay, oo ay ku jiraan qoyskayga iyo asxaabta,. Dhammaan takhaatiirta, kalkaaliyayaasha caafimaadka, iyo shaqaalaha caafimaadka ee i daryeelay. Dhammaan saynisyahannada iyo cilmi-baarayaasha ka qaybqaatay horumarinta daawooyinka iyo daaweynta aan helay. Dhammaan deeq-bixiyeyaasha dhiigga, labadayda ku-deeqayaasha unugyada stem cell, iyo kuwa ku deeqa oo u shaqeeya ururrada abuura diiwaanka unugga stem.
