Neka 2022: Matthew is a 27-year-old patient with Akutna limfoblastična leukemija 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 terapija. 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 obzira na to, to su bile riječi koje sam čuo. Umjesto da sam bila iritirana, odmah sam počela razmišljati kako bih mogla riješiti ovaj izazov. Dok su ljudi oko mene bili zapanjeni i uzrujani, ja sam ovo shvatila kao izazov.
Except for the pioneering CAR-T terapija 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 & Limfom 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.
Napisao sam e-mail u subotu poslijepodne, tako da nisam očekivao odgovor do sljedećeg tjedna, ali sam bio ugodno iznenađen što sam ga dobio isti dan! U njemu je stajalo da se činim prikladnim, ali da se ne mogu dati nikakva jamstva i da je liječenje bilo vrlo eksperimentalno jer je koristilo donorske T-stanice, a ne druge tretmane.
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.
Ali postojao je još jedan kamen spoticanja. Antifungalna profilaksa mi je data kada sam bila na vinkristinu i prednizonu. Jedno od mojih očitanja jetrenih enzima poraslo je iznad dopuštenog raspona ispitivanja. Nažalost, izgubio sam mjesto, ali su mi se razine jetrenih enzima poboljšale tijekom sljedeća dva tjedna i imao sam sreću da mi je ponuđeno drugo radno mjesto.
Kad sam stigao u Kings College Hospital u Londonu, prošao sam pet dana kemoterapije kako bih pripremio svoje tijelo za CAR-T stanice. Nakon toga sam uzeo slobodan dan prije nego što sam sljedećeg dana dobio ćelije. Bio je to nevjerojatan trenutak za mene nakon sveg nagomilavanja. Dok sam gledao kako se te stanice ubrizgavaju u moju PICC liniju, osjetio sam val nade da bi one mogle biti samo ključ za povratak mog 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.
Prebačen sam na intenzivnu njegu. Sjećam se da sam tamo odlazio s uzavrelom toplinom i pokušavao ostati hladan s vlažnim papirnatim ručnicima. Spavao sam kad sam stigao na intenzivnu njegu, potpuno sam očekivao da ću se za nekoliko sati probuditi s porastom temperature. Temperatura mi je, međutim, ostala normalna. Liječnici su bili začuđeni kad su primijetili da više nemam temperaturu i da je nelagoda u boku nestala kada su me sljedećeg jutra došli posjetiti; Čudesno sam se oporavila!
Nekoliko dana kasnije pušten sam s hitne njege. Nakon otprilike tjedan dana pojavio mi se osip na stražnjoj strani šake. Nakon još nekoliko dana, osip se počeo širiti po cijelom tijelu. Steroidne kreme su bile propisane, ali činilo se da nisu puno pomogle. Bilo mi je dosta neugodno zbog osipa, a bilo mi je i teško ne počešati se.
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.
