Mei 2022: Matthew is a 27-year-old patient with Leukemia limfobastik akut 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 Terapi 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.
Apapun, ini adalah kata-kata yang saya dengar. Daripada jengkel, saya serta-merta mula memikirkan bagaimana saya boleh menyelesaikan cabaran ini. Walaupun orang di sekeliling saya terpegun dan kecewa, saya menganggap ini sebagai satu cabaran.
Except for the pioneering Terapi 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 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!
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.
Saya menulis e-mel pada petang Sabtu, jadi saya tidak menjangkakan balasan sehingga minggu berikutnya, tetapi saya terkejut menerima e-mel pada hari yang sama! Ia menyatakan bahawa saya nampaknya sesuai, tetapi tiada jaminan boleh diberikan, dan bahawa rawatan itu sangat eksperimen kerana ia menggunakan sel T penderma dan bukannya rawatan lain.
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.
Tetapi ada satu lagi batu penghalang. Profilaksis antikulat telah diberikan kepada saya semasa saya menggunakan vincristine dan prednisone. Salah satu bacaan enzim hati saya telah meningkat melebihi julat yang dibenarkan percubaan. Malangnya, saya kehilangan tempat saya, tetapi tahap enzim hati saya bertambah baik dalam tempoh dua minggu akan datang, dan saya cukup bernasib baik kerana ditawarkan jawatan lain.
Apabila saya tiba di Hospital Kings College di London, saya menjalani kemoterapi selama lima hari untuk menyediakan badan saya untuk sel CAR-T. Selepas itu, saya mengambil cuti sehari sebelum mendapatkan sel keesokan harinya. Ia adalah saat yang menakjubkan untuk saya selepas semua penumpukan. Semasa saya melihat sel-sel itu disuntik ke dalam talian PICC saya, saya merasakan lonjakan harapan bahawa ia mungkin menjadi kunci untuk mendapatkan semula hidup saya.
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.
Saya telah dipindahkan ke rawatan rapi. Saya masih ingat pergi ke sana dengan kehangatan terik dan cuba kekal sejuk dengan tuala kertas lembap. Saya sedang tidur ketika tiba di rawatan rapi, mengharapkan sepenuhnya untuk bangun dalam beberapa jam dengan suhu saya meningkat. Suhu saya, bagaimanapun, kekal normal. Para doktor kagum apabila menyedari bahawa saya tidak lagi mempunyai suhu dan ketidakselesaan di sebelah saya telah hilang apabila mereka datang melawat saya keesokan harinya; Saya telah membuat pemulihan yang ajaib!
Saya dibebaskan dari rawatan kritikal beberapa hari kemudian. Saya mengalami ruam di belakang tangan saya selepas kira-kira seminggu. Selepas beberapa hari lagi, ruam mula merebak ke seluruh badan saya. Krim steroid telah ditetapkan, tetapi ia nampaknya tidak banyak membantu. Saya agak tidak selesa kerana ruam, dan sukar bagi saya untuk tidak menggaru.
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.
