Kwangathi i-2022: UMatthew uyisiguli esineminyaka engu-27 ubudala I-Acute Lymphoblastic Leukemia owatholwa ngo-2015. Ngeshwa, ukwelashwa okujwayelekile kwe-chemotherapy kanye nokufakelwa komnkantsha kwehlulekile. Wafanelekela ukuvivinywa emtholampilo e-Kings College Hospital, eLondon, lapho alaliswa khona I-CAR-T yokwelapha. U-Matthew uxoxa ngendaba yakhe yomuntu siqu mayelana nokuthi lokhu kwelashwa okuyisisekelo kwasindisa kanjani impilo yakhe. “Ngikhathazekile ngokuthi ama-blast cell akha cishe ingxenye yomnkantsha wakho.” Ngemuva kokungeniswa kwe-UKALL14, imizuliswano emibili ye-FLAG-Ida, kanye nokufakelwa kwethambo lomnkantsha lokungahlobene ukuze kwelaphe i-acute lymphoblastic leukemia yakho, akuzona kanye izindaba ofuna ukuzizwa.
Noma kunjalo, lawa kwakungamazwi engawezwa. Kunokuba ngicasuke, ngaso leso sikhathi ngaqala ukucabanga ukuthi ngingayixazulula kanjani le nselele. Nakuba abantu ababengizungezile babemangele futhi becasukile, ngakuthatha njengenselele lokhu.
Ngaphandle kokuphayona I-CAR-T yokwelapha Ngangizwile kakhulu emaphephandabeni, angizange ngizinake zonke izinketho zami ngemva kokwethulwa ngazo. Lokhu kwakungeyona nje indlela yokwelapha engangiyifisa, kodwa futhi kwakuyindlela engangiyidinga! Okuwukuphela kwenkinga yayiwukuthi yayisesesigabeni sokuqala nesesibili sokuhlolwa komtholampilo, iningi lakho elalise-United States futhi lalibiza cishe u-£500,000, konke okwakudingeka kukhokhwe isiguli!
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 i-blinatumomab, 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!
Lesi sifundo sasinekomkhulu eLondon, futhi ngabonakala ngifaneleka ngokusekelwe encazelweni. Ngabona igama likadokotela oholayo ngase ngimthumelela i-imeyili.
Ngabhala i-imeyili ngoMgqibelo ntambama, ngakho angizange ngilindele impendulo kwaze kwaba isonto elilandelayo, kodwa ngamangala ngokujabula ukuthola eyodwa ngosuku olufanayo! Yathi ngibonakala ngifanelekile, kodwa azikho iziqinisekiso ezinganikezwa, nokuthi ukwelashwa kwakuwukuhlola kakhulu ngoba bekusebenzisa ama-T-cell abanikeli kunezinye izindlela zokwelapha.
Ngithole i-biopsy yomnkantsha kanye nokuhlolwa kwegazi okuhlukahlukene ukuze kuqinisekiswe ukuthi ngihlangabezane nemibandela yocwaningo ngemva kwengxoxo ethile phakathi kukadokotela ohlolayo kanye nochwepheshe bami. Zonke lezi zivivinyo zembula ukuthi ngangikufanelekela ukuquliswa icala, okwangikhulula kakhulu.
Kodwa kwaba nesinye futhi isikhubekiso. Nganikezwa i-antifungal prophylaxis lapho ngisebenzisa i-vincristine ne-prednisone. Okunye ukufundwa kwe-enzyme yesibindi sami bekukhuphuke ngaphezu kobubanzi obuvunyelwe bokuhlolwa. Ngeshwa, ngalahlekelwa indawo yami, kodwa amazinga e-enzyme esibindi athuthuka emasontweni amabili alandelayo, futhi ngaba nenhlanhla yokunikezwa esinye isikhundla.
Lapho ngifika eKings College Hospital eLondon, ngathola ukwelashwa ngamakhemikhali izinsuku ezinhlanu ukuze umzimba wami ulungele amangqamuzana e-CAR-T. Ngemva kwalokho, ngathatha usuku lokuphumula ngaphambi kokuthola amaseli ngakusasa. Kwakuyisikhathi esimangalisayo kimi ngemva kwakho konke ukwakheka. Ngenkathi ngibuka lawo maseli ejovwa kulayini wami we-PICC, ngezwa ngifikelwa ithemba lokuthi angase abe ukhiye wokubuyisela impilo yami.
Bekungekho mkhondo wokwenziwa kwamaseli isikhathi esingangesonto. Khona-ke, cishe isonto ngemva kokumnika, ngaba nomkhuhlane. I-paracetamol kuphela ekwazile ukunciphisa umkhuhlane, owathatha izinsuku ezimbalwa. Lapho izinga lokushisa lami liqala ukwenyuka njengoba i-paracetamol iguga, ngikhumbula ingakhululekile kodwa ingabekezeleleki.
Ngemva kokuzwa ubuhlungu esiswini esingaphansi ezinsukwini ezimbalwa kamuva, ngathunyelwa ukuba ngiyohlolwa i-ultrasound. Ngaba ne-appendicitis, okwamangaza wonke umuntu! Ngangine-anemia, i-neutropenic, futhi nginenani eliphansi le-platelet kuleli qophelo, ngakho ukusebenza kwakuyingozi, kodwa i-appendix ephukile nayo yayingalungile.
Odokotela abahlinzayo nodokotela be-hematology babe nengxoxo emfushane. I-Hematology yayifuna ukunginika ama-antibiotics ukuze ibone ukuthi yayizosiza yini i-appendix yami ukuthi ihlale phansi ngoba babecabanga ukuthi umphumela wamangqamuzana e-CAR-T, kodwa odokotela abahlinzayo babefuna ukungihlinza.
Ngadluliselwa egumbini labagula kakhulu. Ngikhumbula ngiya lapho nginemfudumalo eshisayo futhi ngizama ukuhlala ngipholile namathawula ephepha aswakeme. Ngangilele lapho ngifika egumbini labagula kakhulu, ngilindele ngokugcwele ukuthi ngizovuka emahoreni ambalwa nezinga lokushisa lami likhuphuka. Nokho, izinga lokushisa lami lahlala livamile. Odokotela bamangala lapho bebona ukuthi ngangingasenawo amazinga okushisa nokuthi ngangingasaphatheki kahle ohlangothini lwami lapho bezongivakashela ngakusasa ekuseni; Ngangilulame ngendlela eyisimangaliso!
Ngakhululwa ezinsukwini ezimbalwa kamuva. Ngaba nokuqubuka ngemuva kwesandla sami ngemva kwesonto. Ngemva kwezinsuku ezimbalwa, ukuqubuka kwaqala ukusakazeka kuwo wonke umzimba wami. Ama-Steroid creams ayenqunyelwe, kodwa abonakala engasiza kakhulu. Ngangingakhululekile neze ngenxa yalesi sifo, futhi kwakunzima ukuba nginganwayi.
Ngabona indawo engezansi yomhlane wami ivuvukele futhi ngazizwa igcwele uketshezi ngenye impelasonto. Ngashayela i-on-call hematologist, eyancoma ukuthi ngiye ku-A&E. Ngangeniswa esibhedlela ngemva kokuhlolwa udokotela, ezinsukwini ezimbalwa ngaphambi kwesikhathi sokufakelwa komnkantsha wami wesibili. Nganikezwa i-oral steroid, eyasiza ekunciphiseni ukuqubuka.
Ekugcineni ngakwazi ukubuyela ekhaya ngemva kokufakelwa omunye umnkantsha onzima. Kusukela ngaleso sikhathi, ngiye ngaqhubeka nokubuyisela impilo yami engokwengqondo nengokomzimba namandla. Ngaba nenhlanhla yokugwema ukutheleleka okubalulekile kwaze kwaba yizinyanga ezingu-11 ngemva kokufakelwa kwesibili, lapho ngithola isifo sesifuba esidinga ukuthi ngibuyele esibhedlela izinsuku ezingu-10. Ngaphandle kwalokho, ngiqhubekile nokwakha kabusha impilo yami, ngibuyela emsebenzini, ngaqala ukuzivocavoca, futhi ngathola okujwayelekile kwami okusha, okuhlukile kweyami yangaphambili kodwa kumnandi ngokulinganayo!
Ekugcineni, ngifuna ukuzwakalisa ukubonga kwami kuwo wonke umuntu okukhulunywe ngaye kule ndaba. Wonke umuntu owangisiza, kuhlanganise nomndeni wami nabangane,. Bonke odokotela, abahlengikazi, nezisebenzi zezokwelapha ezazinginakekela. Bonke ososayensi nabacwaningi ababe nesandla ekwakhiweni kwemithi nokwelapha engakuthola. Bonke abanikela ngegazi, abanikela ngama-stem cell ami amabili, nalabo abanikela futhi basebenzele izinhlangano ezakha ukubhaliswa kwama-stem cell.
