Lahko 2022: Matthew is a 27-year-old patient with Akutna limfoblastna levkemija who was diagnosed in 2015. Unfortunately, the standard treatment of chemotherapy and bone marrow transplantation failed. He qualified for a clinical trial at London’s Kings College Hospital, where he underwent CAR-T terapija. Matthew shares his personal story about how this groundbreaking treatment saved his life. “I’m concerned that blast cells make up almost half of your bone marrow.” After undergoing UKALL14 induction, two rounds of FLAG-Ida, and a non-related donor bone marrow transplant to treat your acute lymphoblastic leukaemia, that’s not exactly the news you want to hear.
Ne glede na to so bile to besede, ki sem jih slišal. Namesto da bi bil razdražen, sem takoj začel razmišljati, kako bi lahko rešil ta izziv. Medtem ko so bili ljudje okoli mene osupli in razburjeni, sem to vzel kot izziv.
Except for the pioneering CAR-T terapija I had heard so much about in the press, I disregarded all of my options after being presented with them. This was not only the treatment I desired, but it was also the treatment I required! The only issue was that it was still in phase one and two clinical trials, the majority of which were in the United States and cost roughly £500,000, all of which had to be paid for by the patient!
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.
Našel sem povezavo do levkemije & Limfom 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!
The study was headquartered in London, and I appeared to be eligible based on the description. I recognized the lead doctor’s name and emailed him.
E-poštno sporočilo sem napisal v soboto popoldne, tako da nisem pričakoval odgovora do naslednjega tedna, vendar sem bil prijetno presenečen, ko sem ga prejel še isti dan! Navedlo je, da se zdim primeren, vendar da ni mogoče zagotoviti nobenih zagotovil in da je bilo zdravljenje zelo eksperimentalno, ker je uporabljalo donorske T-celice namesto drugih zdravljenj.
Dobil sem biopsijo kostnega mozga in različne krvne preiskave, ki so potrdile, da izpolnjujem merila študije, po pogovoru med preskušanim zdravnikom in mojimi specialisti. Vsi testi so pokazali, da sem upravičen do preizkusa, kar mi je prineslo veliko olajšanje.
A bil je še en kamen spotike. Protiglivično profilakso so mi dali, ko sem bil na vinkristinu in prednizonu. Ena od mojih vrednosti jetrnih encimov se je dvignila nad dovoljeno mejo preskušanja. Na žalost sem izgubil mesto, vendar so se moji jetrni encimi v naslednjih dveh tednih izboljšali in imel sem srečo, da so mi ponudili drugo delovno mesto.
Ko sem prispel v bolnišnico Kings College Hospital v Londonu, sem opravil pet dni kemoterapije, da sem svoje telo pripravil na celice CAR-T. Po tem sem si vzel prost dan, preden sem naslednji dan dobil celice. Po vsem nastajanju je bil zame neverjeten trenutek. Ko sem opazoval, kako so te celice injicirali v mojo linijo PICC, sem začutil val upanja, da so morda le ključ do ponovnega vračanja mojega življenja.
There had been no trace of activity from the cells for about a week. Then, about a week after the infusion, I had a fever. Only paracetamol was able to reduce the fever, which lasted for several days. When my temperature began to rise as the paracetamol wore off, I remember it being uncomfortable but not unbearable.
After experiencing pain in my lower abdomen a few days later, I was referred for an ultrasound. I developed appendicitis, to everyone’s surprise! I was anaemic, neutropenic, and had a low platelet count at this point, so operating was dangerous, but a ruptured appendix was also not ideal.
Kirurgi in hematologi so imeli kratek pogovor. Hematologi so mi želeli dati antibiotike, da bi ugotovili, ali bo pomagalo, da se moj slepič umiri, ker so mislili, da je to stranski učinek celic CAR-T, vendar so kirurgi želeli operirati.
Premestili so me na intenzivno nego. Spomnim se, da sem šel tja z vročino in poskušal ostati hladen z vlažnimi papirnatimi brisačami. Ko sem prispel na intenzivno nego, sem zaspal in sem pričakoval, da se bom čez nekaj ur zbudila z dvigom temperature. Moja temperatura pa je ostala normalna. Zdravniki so bili presenečeni, ko so opazili, da nimam več temperature in da je nelagodje v boku izginilo, ko so me naslednje jutro prišli obiskati; Čudežno sem okreval!
Nekaj dni pozneje so me odpustili iz kritične oskrbe. Po približno enem tednu se mi je na zadnji strani roke pojavil izpuščaj. Po še nekaj dneh se je izpuščaj začel širiti po celem telesu. Predpisane so bile steroidne kreme, ki pa niso veliko pomagale. Zaradi izpuščaja mi je bilo precej neprijetno in težko sem se ne opraskala.
I noticed the lower area of my back was swollen and felt full of fluid one weekend. I called the on-call haematologist, who recommended that I go to A&E. I was admitted to the hospital after being examined by a doctor, just a few days ahead of schedule for my second bone marrow transplant. I was given oral steroids, which helped to reduce the rash.
Po drugi naporni presaditvi kostnega mozga sem se končno lahko vrnil domov. Od takrat sem še naprej obnavljal svoje duševno in fizično zdravje ter moč. Imel sem srečo, da sem se izognil večjim okužbam do 11 mesecev po drugi presaditvi, ko sem dobil glivično okužbo prsnega koša, zaradi česar sem se moral vrniti v bolnišnico za 10 dni. Poleg tega sem še naprej obnavljal svoje življenje, se vračal na delo, začel vaditi in našel novo normalno, ki je drugačno od prejšnjega, a enako fantastično!
Finally, I want to express my gratitude to everyone mentioned in this narrative. Everyone that helped me, including my family and friends,. All of the doctors, nurses, and medical personnel who looked after me. All of the scientists and researchers who contributed to the development of the drugs and therapies I received. All blood donors, my two stem cell donors, and those who donate to and work for the organizations that create the stem cell registry.
