Maio 2022: Matthew is a 27-year-old patient with Leucemia linfoblástica aguda 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 Terapia CAR-T. 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.
Independentemente disso, essas foram as palavras que ouvi. Em vez de ficar irritado, comecei imediatamente a considerar como poderia resolver esse desafio. Enquanto as pessoas ao meu redor estavam atordoadas e chateadas, encarei isso como um desafio.
Except for the pioneering Terapia CAR-T 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 blinatumomabe, but it was not to be.
I found a link to the Leukemia & linfoma 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.
Escrevi o e-mail em uma tarde de sábado, então não esperava uma resposta até a semana seguinte, mas fiquei agradavelmente surpreso ao receber uma no mesmo dia! Ele afirmou que eu parecia ser adequado, mas que nenhuma garantia poderia ser fornecida, e que o tratamento era muito experimental porque empregava células T do doador em vez de outros tratamentos.
I got a bone marrow biopsy and various blood tests to confirm I met the study criteria after some conversation between the trial doctor and my specialists. All of the tests revealed that I was eligible for the trial, which gave me great relief.
Mas havia mais um obstáculo. A profilaxia antifúngica me foi dada quando eu estava tomando vincristina e prednisona. Uma das minhas leituras de enzimas hepáticas subiu acima da faixa permitida pelo teste. Infelizmente, perdi minha vaga, mas meus níveis de enzimas hepáticas melhoraram nas duas semanas seguintes e tive a sorte de receber outra posição.
Quando cheguei ao Kings College Hospital, em Londres, passei por cinco dias de quimioterapia para preparar meu corpo para as células CAR-T. Depois disso, tirei um dia de folga antes de pegar as células no dia seguinte. Foi um momento incrível para mim depois de toda a preparação. Enquanto observava aquelas células sendo injetadas em minha linha PICC, senti uma onda de esperança de que elas pudessem ser a chave para recuperar minha vida.
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.
The surgeons and the haematology physicians had a brief chat. Haematology wanted to give me antibiotics to see if it would help my appendix settle down because they thought it was a side effect of the CAR-T cells, but the surgeons wanted to operate.
Fui transferido para os cuidados intensivos. Lembro-me de ir lá com um calor sufocante e tentar manter a calma com toalhas de papel úmidas. Eu estava dormindo quando cheguei à terapia intensiva, esperando acordar em algumas horas com minha temperatura subindo. Minha temperatura, no entanto, permaneceu normal. Os médicos ficaram surpresos ao notar que eu não estava mais com febre e que o desconforto do meu lado havia desaparecido quando eles vieram me visitar na manhã seguinte; Eu tinha feito uma recuperação milagrosa!
Fui liberado dos cuidados intensivos alguns dias depois. Eu desenvolvi uma erupção na parte de trás da minha mão depois de cerca de uma semana. Depois de mais alguns dias, a erupção começou a se espalhar por todo o meu corpo. Cremes de esteróides foram prescritos, mas não pareceram ajudar muito. Eu estava bastante desconfortável por causa da erupção cutânea, e era difícil para mim não coçar.
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.
I was finally able to return home after another arduous bone marrow transplant. Since then, I’ve continued to restore my mental and physical health and vigour. I was fortunate enough to avoid significant infections until 11 months after the second transplant, when I acquired a fungal chest infection that required me to return to the hospital for 10 days. Aside from that, I’ve continued to reconstruct my life, returning to work, beginning to exercise, and finding my new normal, which is different from my previous one but equally fantastic!
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.
