May 2022: Matthew is a 27-year-old patient with Akute Limfoblastiese Leukemie 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-terapie. 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.
Ongeag, dit was die woorde wat ek gehoor het. Eerder as om geïrriteerd te wees, het ek dadelik begin oorweeg hoe ek hierdie uitdaging kon oplos. Terwyl mense rondom my verstom en ontsteld was, het ek dit as 'n uitdaging aanvaar.
Except for the pioneering CAR-T-terapie 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 & Limfoom 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.
Ek het die e-pos op 'n Saterdagmiddag geskryf, so ek het nie 'n reaksie verwag tot die volgende week nie, maar ek was aangenaam verras om dieselfde dag een te ontvang! Dit het gesê dat ek geskik blyk te wees, maar dat geen waarborge verskaf kan word nie, en dat die behandeling baie eksperimenteel was omdat dit skenker-T-selle eerder as ander behandelings gebruik het.
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.
Maar daar was nog een struikelblok. Antifungale profilakse is aan my gegee toe ek op vincristine en prednisoon was. Een van my lewerensiemlesings het bo die proef se toegelate omvang gestyg. Ongelukkig het ek my plek verloor, maar my lewerensiemvlakke het oor die volgende twee weke verbeter, en ek was gelukkig genoeg om 'n ander posisie aangebied te word.
Toe ek by die Kings College-hospitaal in Londen aankom, het ek vyf dae se chemoterapie ondergaan om my liggaam vir die CAR-T-selle voor te berei. Daarna het ek 'n dag verlof geneem voordat ek die volgende dag die selle gekry het. Dit was 'n wonderlike oomblik vir my na al die opbou. Terwyl ek gekyk het hoe die selle in my PICC-lyn ingespuit word, het ek 'n opwelling van hoop gevoel dat hulle dalk net die sleutel is om my lewe te herwin.
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.
Ek is na intensiewe sorg oorgeplaas. Ek onthou hoe ek met 'n snikhete warmte soontoe gegaan het en probeer koel bly met klam papierhanddoeke. Ek het geslaap toe ek by intensiewe sorg aangekom het, vol verwagting om oor 'n paar uur wakker te word met my temperatuur wat styg. My temperatuur het egter normaal gebly. Die dokters was verstom om te sien dat ek nie meer koors gehad het nie en dat die ongemak in my sy weg was toe hulle my die volgende oggend kom besoek het; Ek het wonderbaarlik herstel!
Ek is 'n paar dae later uit kritieke sorg ontslaan. Ek het na ongeveer 'n week 'n uitslag op die agterkant van my hand ontwikkel. Na nog 'n paar dae het die uitslag oor my hele liggaam begin versprei. Steroïedroom is voorgeskryf, maar dit het blykbaar nie veel gehelp nie. Ek was nogal ongemaklik as gevolg van die uitslag, en dit was vir my moeilik om nie te krap nie.
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.
