May 2022: Matthew is a 27-year-old patient with Akutt lymfoblastisk leukemi 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-terapi. 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.
Uansett, dette var ordene jeg hørte. I stedet for å bli irritert, begynte jeg umiddelbart å vurdere hvordan jeg kunne løse denne utfordringen. Mens folk rundt meg var lamslått og opprørt, tok jeg dette som en utfordring.
Except for the pioneering CAR-T-terapi 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 & Lymfom 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.
Jeg skrev e-posten en lørdag ettermiddag, så jeg forventet ikke svar før uken etter, men jeg ble positivt overrasket over å motta en samme dag! Det sto at jeg så ut til å være egnet, men at det ikke kunne gis garantier, og at behandlingen var veldig eksperimentell fordi den benyttet donor-T-celler fremfor andre behandlinger.
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.
Men det var en snublestein til. Soppdrepende profylakse ble gitt til meg da jeg gikk på vinkristin og prednison. En av leverenzymavlesningene mine hadde steget over forsøkets tillatte område. Dessverre mistet jeg flekken, men leverenzymnivåene mine ble bedre i løpet av de neste to ukene, og jeg var heldig nok til å bli tilbudt en annen stilling.
Da jeg ankom Kings College Hospital i London, gjennomgikk jeg fem dager med kjemoterapi for å forberede kroppen min på CAR-T-cellene. Etter det tok jeg en fridag før jeg fikk cellene dagen etter. Det var et fantastisk øyeblikk for meg etter all oppbyggingen. Da jeg så de cellene som ble injisert inn i PICC-linjen min, følte jeg en bølge av håp om at de bare kunne være nøkkelen til å gjenvinne livet mitt.
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.
Jeg ble overført til intensiv. Jeg husker at jeg dro dit med en brennende varme og prøvde å holde meg kjølig med fuktige papirhåndklær. Jeg sov da jeg ankom intensiven, og forventet fullt ut å våkne om noen timer med stigende temperatur. Temperaturen min forble imidlertid normal. Legene ble forbløffet over å legge merke til at jeg ikke lenger hadde feber og at ubehaget i siden min var borte da de kom for å besøke meg neste morgen; Jeg hadde fått en mirakuløs bedring!
Jeg ble løslatt fra akuttmottaket noen dager senere. Jeg fikk utslett på håndbaken etter omtrent en uke. Etter noen dager til begynte utslettet å spre seg over hele kroppen min. Steroide kremer ble foreskrevet, men de så ikke ut til å hjelpe mye. Jeg var ganske ukomfortabel på grunn av utslettet, og det var vanskelig for meg å ikke klø meg.
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.
