May 2022: Matthew is a 27-year-old patient with Гострий лімфобластний лейкоз 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 Терапія 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.
Незважаючи на це, це були слова, які я почув. Замість того, щоб роздратуватись, я миттєво почав думати, як би я міг вирішити цю проблему. Хоча люди навколо мене були приголомшені та засмучені, я сприйняв це як виклик.
Except for the pioneering Терапія 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 блінатумомаб, but it was not to be.
I found a link to the Leukemia & Лімфома 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.
Я написав електронного листа в суботу вдень, тому не очікував відповіді до наступного тижня, але був приємно здивований, отримавши його того ж дня! У ньому було зазначено, що я здається відповідним, але ніяких гарантій не може бути надано, і що лікування було дуже експериментальним, оскільки воно використовувало донорські Т-клітини, а не інші методи лікування.
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.
Але був ще один камінь спотикання. Протигрибкову профілактику мені дали, коли я отримував вінкристин і преднізолон. Одне з моїх показників ферментів печінки піднялося вище дозволеного діапазону дослідження. На жаль, я втратив своє місце, але рівень ферментів печінки покращився протягом наступних двох тижнів, і мені пощастило, що мені запропонували іншу посаду.
Коли я прибув до лікарні Kings College в Лондоні, я пройшов п’ять днів хіміотерапії, щоб підготувати своє тіло до клітин CAR-T. Після цього я взяв вихідний, перш ніж отримати камери наступного дня. Це був дивовижний момент для мене після всього нарощування. Коли я спостерігав, як ці клітини вводять у мою лінію PICC, я відчув прилив надії, що вони можуть бути просто ключем до повернення мого життя.
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.
Мене перевели в реанімацію. Я пам’ятаю, як ходив туди з спекотним теплом і намагався залишатися прохолодним з вологими паперовими рушниками. Я спав, коли прийшов до реанімації, цілком очікував, що прокинуся через кілька годин з підвищенням температури. Проте моя температура залишалася нормальною. Лікарі з подивом помітили, що у мене більше немає температури і що дискомфорт у боці зник, коли вони прийшли до мене наступного ранку; Я дивовижно одужав!
Через кілька днів мене звільнили з реанімації. Приблизно через тиждень у мене з’явилася висипка на тильній стороні долоні. Ще через кілька днів висип почала поширюватися по всьому тілу. Виписували стероїдні креми, але вони, здається, не дуже допомагали. Мені було досить незручно через висип, і мені було важко не почесатися.
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.
