Mayu 2022: Matthew is a 27-year-old patient with Murar cutar sankarar Lymphoblastic mai m 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 far. 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.
Ko da kuwa, waɗannan su ne kalmomin da na ji. Maimakon in fusata, nan take na fara tunanin yadda zan magance wannan ƙalubale. Yayin da mutanen da ke kusa da ni suka yi mamaki da bacin rai, na dauki wannan a matsayin kalubale.
Except for the pioneering CAR-T far 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 blinatummab, 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.
Na rubuta imel ɗin a ranar Asabar da yamma, don haka ban yi tsammanin amsa ba sai mako mai zuwa, amma na yi mamakin samun ɗaya a rana ɗaya! Ya bayyana cewa da alama na dace, amma ba za a iya bayar da garantin ba, kuma maganin gwaji ne sosai saboda yana ɗaukar ƙwayoyin T-cell masu ba da gudummawa maimakon sauran jiyya.
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.
Amma akwai wani abin tuntuɓe. Antifungal prophylaxis an ba ni lokacin da nake kan vincristine da prednisone. Ɗayan karatun enzyme na hanta ya tashi sama da iyakar izinin gwaji. Abin takaici, na rasa tabo, amma matakan enzyme na hanta sun inganta a cikin makonni biyu masu zuwa, kuma na yi sa'a a ba ni wani matsayi.
Lokacin da na isa Asibitin Kings College da ke Landan, na yi kwanaki biyar na maganin chemotherapy don shirya jikina ga ƙwayoyin CAR-T. Bayan haka, na ɗauki hutu na kwana ɗaya kafin in sami sel washegari. Lokaci ne mai ban mamaki a gare ni bayan duk ginin. Yayin da nake kallon waɗancan ƙwayoyin da ake yi wa allurar cikin layin PICC na, na ji wani buri na cewa za su iya zama mabuɗin maido da rayuwata.
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.
An canza ni zuwa kulawa mai zurfi. Na tuna zuwa can tare da zafi mai zafi da ƙoƙarin kasancewa cikin sanyi da tawul ɗin takarda mai ɗanɗano. Ina barci lokacin da na isa wurin kulawa mai zurfi, ina tsammanin zan farka cikin 'yan sa'o'i tare da hauhawar zafin jiki na. Zazzabi na, duk da haka, ya kasance daidai. Likitoci sun yi mamakin ganin cewa ba ni da zazzabi kuma rashin jin daɗi a gefena ya tafi sa’ad da suka zo ziyarce ni da safe; Da na yi mu'ujiza warkewa!
An sallame ni daga jinya bayan ƴan kwanaki. Na sami kumburi a bayan hannuna bayan kamar mako guda. Bayan wasu 'yan kwanaki sai kurji ya fara yaduwa a jikina gaba daya. An rubuta magungunan steroid, amma da alama ba su taimaka sosai ba. Ban ji daɗi ba saboda kurjin, kuma ya yi mini wuya ban fasa ba.
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.
