Може КСНУМКС: Matthew is a 27-year-old patient with Акутна лимфобластна леукемија 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 ЦАР-Т терапија. 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.
Без обзира на то, ово су биле речи које сам чуо. Уместо да се изнервирам, одмах сам почео да размишљам како да решим овај изазов. Док су људи око мене били запањени и узнемирени, ја сам ово схватио као изазов.
Except for the pioneering ЦАР-Т терапија 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 блинатумомаб, but it was not to be.
I found a link to the Leukemia & Лимфом 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.
Написао сам имејл у суботу поподне, тако да нисам очекивао одговор до следеће недеље, али сам био пријатно изненађен што сам га добио истог дана! У њему је стајало да се чиним да сам прикладан, али да се не могу дати никакве гаранције и да је третман био веома експерименталан јер је користио донорске Т-ћелије, а не друге третмане.
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.
Али постојао је још један камен спотицања. Антифунгална профилакса ми је дата када сам био на винкристину и преднизону. Једно од мојих очитавања ензима јетре порасло је изнад дозвољеног опсега испитивања. Нажалост, изгубио сам место, али моји нивои ензима јетре су се побољшали у наредне две недеље, и био сам довољно срећан да ми је понуђена друга позиција.
Када сам стигао у болницу Кингс Цоллеге у Лондону, прошао сам пет дана хемотерапије како бих припремио своје тело за ЦАР-Т ћелије. После тога сам узео слободан дан пре него што сам следећег дана добио ћелије. Био је то невероватан тренутак за мене после свег нагомилавања. Док сам гледао како се те ћелије убризгавају у моју ПИЦЦ линију, осетио сам талас наде да би оне могле бити само кључ за враћање мог живота.
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.
Пребачен сам на интензивну негу. Сећам се да сам отишао тамо са запаљивом топлином и покушавао да останем хладан уз влажне папирне пешкире. Спавао сам када сам стигао на интензивну негу, потпуно очекивајући да ћу се пробудити за неколико сати са порастом температуре. Моја температура је, међутим, остала нормална. Лекари су били зачуђени када су приметили да више немам температуру и да је нелагодност у боку нестала када су дошли да ме посете следећег јутра; Чудесно сам се опоравила!
Неколико дана касније пуштен сам са интензивне неге. Добио сам осип на полеђини руке након отприлике недељу дана. После још неколико дана, осип је почео да се шири по целом телу. Стероидне креме су биле прописане, али изгледа да нису много помогле. Било ми је прилично непријатно због осипа и било ми је тешко да се не почешем.
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.
