Bealtaine 2022: Matthew is a 27-year-old patient with Leicéime Lymphoblastic Géar 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 Teiripe CAR-T. 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.
Is cuma, ba iad seo na focail a chuala mé. Seachas a bheith irritated, thosaigh mé láithreach ag smaoineamh conas a d'fhéadfainn an dúshlán seo a réiteach. Cé go raibh daoine timpeall orm sáite agus trína chéile, ghlac mé leis seo mar dhúshlán.
Except for the pioneering Teiripe CAR-T 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.
Scríobh mé an ríomhphost tráthnóna Dé Sathairn, mar sin ní raibh mé ag súil le freagra go dtí an tseachtain dár gcionn, ach bhí ionadh orm a fháil ar cheann an lá céanna! Luaigh sé go raibh an chuma orm go raibh mé oiriúnach, ach nach bhféadfaí aon ráthaíochtaí a sholáthar, agus go raibh an chóireáil an-turgnamhach toisc gur úsáid sé T-chealla deontóra seachas cóireálacha eile.
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.
Ach bhí bloc amháin eile ann. Tugadh próifiolacsas antifungal dom nuair a bhí mé ar vincristine agus prednisone. Bhí ceann de mo léamha einsímí ae ardaithe os cionn raon ceadaithe na trialach. Ar an drochuair, chaill mé mo láthair, ach tháinig feabhas ar mo leibhéil einsíme ae thar an dá sheachtain amach romhainn, agus bhí an t-ádh orm go ndearnadh post eile a thairiscint dom.
Nuair a shroich mé Ospidéal Kings College i Londain, chuaigh mé faoi cheimiteiripe cúig lá chun mo chorp a ullmhú do na cealla CAR-T. Tar éis sin, ghlac mé lá saor sula bhfuair mé na cealla an lá dár gcionn. Nóiméad iontach a bhí ann domsa tar éis an tógáil ar fad. Agus mé ag faire ar na cealla sin á instealladh isteach i mo líne PICC, bhraith mé borradh dóchais go bhféadfadh siad a bheith díreach mar an eochair do mo shaol a fháil ar ais.
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.
Aistríodh mé go dianchúram. Is cuimhin liom dul ann le teas sweltering agus ag iarraidh fanacht fionnuar le tuáillí páipéir tais. Bhí mé i mo chodladh nuair a shroich mé an dianchúram, ag súil go hiomlán le dúiseacht i gceann cúpla uair an chloig agus mo theocht ag ardú. Mo teocht, áfach, d'fhan gnáth. Bhí ionadh ar na lianna a thabhairt faoi deara nach raibh teocht orm a thuilleadh agus go raibh an míchompord i mo thaobh imithe nuair a tháinig siad ar cuairt chugam an mhaidin dár gcionn; Bhí téarnamh míorúilteach déanta agam!
Scaoileadh saor mé ón gcúram criticiúil cúpla lá ina dhiaidh sin. D'fhorbair mé gríos ar chúl mo láimhe tar éis timpeall seachtaine. Tar éis cúpla lá eile, thosaigh an gríos ag scaipeadh ar mo chorp ar fad. Forordaíodh uachtair steroid, ach ní raibh an chuma orthu gur chabhraigh siad mórán. Bhí mé míchompordach go leor mar gheall ar an gríos, agus bhí sé deacair dom gan scratch.
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.
