Máj 2022: Matthew is a 27-year-old patient with Akútna lymfoblastická 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 terapia. 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.
Bez ohľadu na to, toto boli slová, ktoré som počul. Namiesto toho, aby som bol podráždený, som okamžite začal uvažovať, ako by som mohol vyriešiť túto výzvu. Zatiaľ čo ľudia okolo mňa boli ohromení a naštvaní, bral som to ako výzvu.
Except for the pioneering CAR-T terapia 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 & Lymfóm 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.
Napísal som e-mail v sobotu popoludní, takže som neočakával odpoveď až do nasledujúceho týždňa, ale bol som príjemne prekvapený, keď som ju dostal v ten istý deň! Uvádzalo sa v ňom, že sa javím ako vhodný, ale nemožno poskytnúť žiadne záruky a že liečba bola veľmi experimentálna, pretože využívala skôr darcovské T-bunky ako iné liečby.
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.
Bol tu však ešte jeden kameň úrazu. Antifungálnu profylaxiu mi dali, keď som bol na vinkristíne a prednizóne. Jeden z mojich hodnôt pečeňových enzýmov stúpol nad povolený rozsah štúdie. Bohužiaľ som prišiel o miesto, ale počas nasledujúcich dvoch týždňov sa mi zlepšili hladiny pečeňových enzýmov a mal som to šťastie, že mi ponúkli inú pozíciu.
Keď som prišiel do Kings College Hospital v Londýne, podstúpil som päť dní chemoterapie, aby som svoje telo pripravil na bunky CAR-T. Potom som si dal deň pauzu, kým som na druhý deň dostal bunky. Bol to pre mňa úžasný moment po tom všetkom nahromadení. Keď som sledoval, ako sa tieto bunky vstrekujú do mojej línie PICC, cítil som nával nádeje, že by mohli byť kľúčom k znovuzískaniu môjho života.
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.
Previezli ma na intenzívnu starostlivosť. Spomínam si, ako som tam chodil s úmorným teplom a snažil som sa zostať chladný s vlhkými papierovými utierkami. Keď som prišiel na jednotku intenzívnej starostlivosti, spal som a plne som očakával, že sa o pár hodín zobudím a moja teplota stúpa. Moja teplota však zostala v norme. Lekári boli ohromení, keď si všimli, že už nemám teplotu a že nepríjemné pocity v boku zmizli, keď ma na druhý deň ráno prišli navštíviť; Urobil som zázračné uzdravenie!
O niekoľko dní ma prepustili z intenzívnej starostlivosti. Asi po týždni sa mi objavila vyrážka na chrbte ruky. Po niekoľkých dňoch sa mi vyrážka začala šíriť po celom tele. Steroidné krémy boli predpísané, ale zdalo sa, že veľmi nepomáhajú. Bolo mi dosť nepríjemne kvôli vyrážke a bolo pre mňa ťažké sa nepoškriabať.
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.
