Május 2022: Matthew is a 27-year-old patient with Akut lymphoblastikus leukémia 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 terápia. 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.
Ettől függetlenül ezeket a szavakat hallottam. Ahelyett, hogy ingerült lettem volna, azonnal azon kezdtem gondolkodni, hogyan tudnám megoldani ezt a kihívást. Míg a körülöttem lévők megdöbbentek és idegesek voltak, én ezt kihívásnak vettem.
Except for the pioneering CAR-T terápia 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.
Szombat délután írtam az e-mailt, így csak a következő héten vártam választ, de kellemes meglepetés volt, hogy még aznap megkaptam! Azt állította, hogy alkalmasnak tűnik, de nem lehet garanciát adni, és hogy a kezelés nagyon kísérleti jellegű, mert donor T-sejteket használt, nem pedig más kezeléseket.
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.
De volt még egy akadály. Gombaellenes profilaxist kaptam, amikor vinkrisztint és prednizont kaptam. Az egyik májenzim-értékem a vizsgálatban megengedett tartomány fölé emelkedett. Sajnos elvesztettem a helyem, de a májenzim-szintem a következő két hétben javult, és volt szerencsém más pozíciót ajánlani.
Amikor megérkeztem a londoni Kings College Kórházba, ötnapos kemoterápián estem át, hogy felkészítsem a szervezetemet a CAR-T sejtekre. Ezt követően kivettem egy szabadnapot, mielőtt másnap megkaptam a sejteket. Csodálatos pillanat volt ez számomra az összes felépítés után. Miközben néztem, ahogy ezeket a sejteket befecskendezik a PICC-vonalamba, felfutott bennem a remény, hogy talán csak a kulcs az életem visszaszerzéséhez.
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.
Átvittek az intenzív osztályra. Emlékszem, rekkenő melegséggel mentem oda, és nedves papírtörlővel próbáltam hűvös maradni. Aludtam, amikor megérkeztem az intenzív osztályra, és teljes mértékben arra számítottam, hogy néhány órán belül felébredek a hőmérsékletem emelkedésével. A hőmérsékletem azonban normális maradt. Az orvosok csodálkozva vették észre, hogy már nincs lázam, és a kellemetlen érzés az oldalamban elmúlt, amikor másnap reggel meglátogattak; Csodálatos módon felépültem!
Néhány nappal később kiengedtek az intenzív osztályról. Körülbelül egy hét után kiütések jelentek meg a kezemen. Néhány nap múlva a kiütés elkezdett szétterjedni az egész testemen. Szteroid krémeket írtak fel, de úgy tűnt, nem sokat segítettek. Eléggé kényelmetlenül éreztem magam a kiütések miatt, és nehezen tudtam megvakarni.
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.
