May 2022: Matthew murwere ane makore makumi maviri nemanomwe Acute Lymphoblastic Leukemia uyo akaonekwa muna 2015. Zvinosuruvarisa, kurapa kwakajairwa kwekemotherapy uye kuputika kwepfupa kwakakundikana. Akakodzera kutongwa kwekiriniki kuLondon Kings College Hospital, kwaakanoitirwa CAR-T kurapa. Matthew anogovera nyaya yake pachake pamusoro pekuti kurapwa kwakasimba uku kwakaponesa sei hupenyu hwake. "Ndiri kunetsekana kuti masero anoputika anoita hafu yemwongo wako." Mushure mekuita UKALL14 induction, marounds maviri eFLAG-Ida, uye isina hukama donor bhonzo transplant kurapa acute lymphoblastic leukemia yako, handiyo chaiyo nhau yaunoda kunzwa.
Zvisinei hazvo, aya ndiwo mashoko andakanzwa. Pane kugumbuka, ndakabva ndatanga kufunga kuti ndaizogadzirisa sei dambudziko iri. Nepo vanhu vakandipoteredza vakakatyamadzwa uye vakashatirwa, ndakatora ikoku sedenho.
Kunze kwekupayona CAR-T kurapa Ndakanga ndanzwa zvakawanda nezve mupepanhau, handina kukoshesa sarudzo dzangu dzese mushure mekupihwa navo. Uku kwaisangova kurapwa kwandaida, asi kwaivawo kurapwa kwandaida! Nyaya bedzi yakanga iri yokuti yakanga ichiri muchikamu chekutanga uye chechipiri chekuedza kwekiriniki, kwakawanda kwacho kwaiva muUnited States uye kwaidhura mari inosvika £500,000, iyo yose yaifanira kubhadharwa nomurwere!
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 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!
Dzidzo yacho yakanga ine dzimbahwe muLondon, uye ndaiita sendakakodzera zvichienderana nerondedzero. Ndakaziva zita raChiremba uya ndichibva ndamutumira email.
Ndakanyora email musi weMugovera masikati, saka handina kutarisira mhinduro kusvika vhiki raitevera, asi ndakashamiswa nekugamuchira imwe zuva rimwe chete! Yakataura kuti ndaiita kunge ndakakodzera, asi hapana vimbiso yaigona kupihwa, uye kuti kurapwa kwacho kwaive kwekuyedza nekuti kwakashandisa maT-cells pane mamwe marapiro.
Ndakawana bhonzo biopsy uye ongororo dzeropa dzakasiyana siyana kuratidza kuti ndakasangana nemaitiro ekudzidza mushure meimwe hurukuro pakati pachiremba wekuyedza nenyanzvi dzangu. Miedzo yose yakaratidza kuti ndaikodzera kutongwa, izvo zvakandizorodza zvikuru.
Asi pakanga pane chimwezve chigumbuso. Antifungal prophylaxis yakapiwa kwandiri pandakanga ndiri pavincristine uye prednisone. Imwe yemaenzayimu echiropa changu yakanga yakwira pamusoro pemuyedzo unobvumidzwa. Nehurombo, ndakarasa nzvimbo yangu, asi mazinga ee enzyme yechiropa akavandudzwa mumavhiki maviri akatevera, uye ndakaita rombo rakanaka rekupihwa imwe nzvimbo.
Pandakasvika paKings College Hospital muLondon, ndakarapwa mazuva mashanu echemotherapy kuti muviri wangu ugadzirire masero eCAR-T. Pashure paizvozvo, ndakatora zuva rekuzorora ndisati ndawana masero mangwana acho. Yakanga iri nguva inoshamisa kwandiri mushure mezvose zvekuvaka. Pandakaona maseru aya achipinzwa mumutsara wangu wePICC, ndakanzwa kuwedzera kwetariro yekuti vangangove kiyi yekudzoreredza hupenyu hwangu.
Pakanga pasati pamboita twunhu twakawanda kubva mumacells kweinenge svondo. Zvino, rinenge vhiki mushure mokuisirwa, ndakava nefivha. Paracetamol chete ndiyo yakakwanisa kuderedza fivha, iyo yakagara kwemazuva akawanda. Apo tembiricha yangu payakatanga kukwira paracetamol payaipera, ndinorangarira kuti yaisagadzikana asi isingatsungiririki.
Mushure mekurwadziwa mudumbu mangu mazuva mashoma gare gare, ndakaendeswa kunoongororwa ultrasound. Ndakaita appendicitis, kushamisika kwemunhu wese! Ndakanga ndine chirwere chekushaya ropa, neutropenic, uye ndaiva neplatelet count yakaderera panguva iyi, saka kushanda kwaiva nengozi, asi appendix yakatsemuka yakanga isinawo kunaka.
Vanachiremba vekuvhiya nevarapi vehematology vakaita hurukuro pfupi. Hematology yaida kundipa mishonga inorwisa mabhakitiriya kuti ione kana yaizobatsira kuti appendix yangu igadzikane nokuti vaifunga kuti yakanga iri rutivi rwemasero eCAR-T, asi vavhiyi vaida kuvhiya.
Ndakaendeswa kunochengetwa varwere zvikuru. Ndinoyeuka ndichiendako nekudziya kwaipisa uye ndichiedza kuramba ndakatonhorerwa nematauro epepa akanyorova. Ndakanga ndakarara pandakasvika pachipatara chevarwere, ndichitarisira kumuka mumaawa mashoma uye tembiricha yangu yaikwira. Tembiricha yangu, zvisinei, yakaramba iripo. Vanachiremba vakashamiswa kuona kuti ndakanga ndisisina tembiricha uye kuti kusagadzikana murutivi rwangu kwakanga kwaenda pavakauya kuzondishanyira mangwanani akatevera; Ndakanga ndapora zvinoshamisa!
Ndakazobudiswa muchipatara mazuva mashomanana gare gare. Ndakaita mapundu kuseri kweruoko mushure mevhiki. Mushure memamwe mazuva mashoma, mapundu akatanga kupararira nemuviri wangu wese. Mafuta eSteroid akarairwa, asi haana kuita seanobatsira zvakanyanya. Ndakanga ndisina kugadzikana nekuda kwepundu, uye zvakandiremera kuti ndisakwenya.
Ndakaona kuzasi kwemusana kwangu kwakazvimba ndikanzwa kuzara mvura imwe weekend. Ndakafonera on-call hematologist, uyo akandikurudzira kuti ndiende kuA&E. Ndakapinzwa muchipatara pashure pokuongororwa nachiremba, kwasara mazuva mashomanene bedzi pamberi penguva yokuisirwa mwongo wangu wechipiri. Ndakapiwa oral steroids, iyo yakabetsera kuderedza mapundu.
Ndakazokwanisa kudzokera kumba pashure pokumwe kuisirwa mwongo kwakaoma. Kubva ipapo, ndakaramba ndichivandudza hutano hwangu hwepfungwa nemuviri uye simba. Ndakaita rombo rakanaka rekudzivirira hutachiona hwakakura kusvika mwedzi gumi neimwe mushure mekuisirwa kechipiri, pandakawana fungal chest infection yaida kuti ndidzokere kuchipatara kwemazuva gumi. Kunze kweizvozvo, ndakaenderera mberi nekuvakazve hupenyu hwangu, kudzokera kubasa, kutanga kuita maekisesaizi, uye nekuwana yangu itsva yakajairika, yakasiyana neyangu yekare asi yakaenzana zvakaenzana!
Pakupedzisira, ndinoda kuratidza kutenda kwangu kune wese ataurwa murondedzero iyi. Vese vakandibatsira, kusanganisira mhuri yangu neshamwari,. Vanachiremba vese, vanamukoti, uye vashandi vezvokurapa vainditarisira. Vese vesainzi nevaongorori vakabatsira mukugadzirwa kwemishonga uye marapiro andakawana. Vese vanopa ropa, vaviri vangu vanopa masero, uye avo vanopa uye vanoshandira masangano anogadzira stem cell registry.
