ግንቦት 2022: Matthew is a 27-year-old patient with ፈሳሽ ሊምፎብላስቲክ ሉኪሚያ 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 ቴራፒ. 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.
ምንም ይሁን ምን የሰማኋቸው ቃላት እነዚህ ነበሩ። ከመበሳጨት ይልቅ ይህን ፈተና እንዴት መፍታት እንደምችል ወዲያውኑ ማሰብ ጀመርኩ። በዙሪያዬ ያሉ ሰዎች ሲደነቁሩ እና ሲናደዱ፣ ይህንን እንደ ፈተና ወሰድኩት።
Except for the pioneering CAR-T ቴራፒ 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 & ሊምፎማም 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.
ቅዳሜ ከሰአት በኋላ ኢሜይሉን ጻፍኩኝ፣ስለዚህ እስከሚቀጥለው ሳምንት ድረስ ምላሽ አልጠበቅኩም፣ነገር ግን አንድ ቀን መቀበል በጣም አስገርሞኛል! እኔ ተስማሚ መስሎ መታየቴን ነገር ግን ምንም አይነት ዋስትና ሊሰጥ እንደማይችል እና ህክምናው ከሌሎች ህክምናዎች ይልቅ ለጋሽ ቲ-ሴሎችን ስለሚጠቀም በጣም ሙከራ ነው ብሏል።
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.
ግን አንድ ተጨማሪ እንቅፋት ነበር። በ vincristine እና prednisone ላይ በነበርኩበት ጊዜ ፀረ-ፈንገስ ፕሮፊሊሲስ ተሰጠኝ. አንደኛው የጉበት ኢንዛይም ንባቤ ከሙከራው ከሚፈቀደው መጠን በላይ ከፍ ብሏል። በሚያሳዝን ሁኔታ፣ ቦታዬን አጣሁ፣ ነገር ግን በሚቀጥሉት ሁለት ሳምንታት ውስጥ የጉበት ኢንዛይም መጠኑ ተሻሽሏል፣ እና ሌላ ቦታ በመሰጠቴ እድለኛ ነኝ።
በለንደን ኪንግስ ኮሌጅ ሆስፒታል ስደርስ ሰውነቴን ለ CAR-T ሴሎች ለማዘጋጀት ለአምስት ቀናት የኬሞቴራፒ ሕክምና ወስጃለሁ። ከዚያ በኋላ በሚቀጥለው ቀን ሴሎቹን ከማግኘቴ በፊት አንድ ቀን እረፍት ወሰድኩ. ከግንባታው በኋላ ለእኔ አስደናቂ ጊዜ ነበር። እነዚያ ህዋሶች ወደ ፒሲሲሲ መስመር ሲወጉ ስመለከት፣ ህይወቴን መልሶ ለማግኘት ቁልፉ እነሱ ብቻ ሊሆኑ እንደሚችሉ የተስፋ ጭላንጭል ተሰማኝ።
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.
ወደ ጽኑ እንክብካቤ ተዛወርኩ። በጋለ ሙቀት ወደዚያ ሄጄ በእርጥበት የወረቀት ፎጣዎች ለመቀዝቀዝ እንደሞከርኩ አስታውሳለሁ። የሙቀት መጠኑ እየጨመረ በጥቂት ሰአታት ውስጥ ከእንቅልፌ ለመነሳት ሙሉ በሙሉ እየጠበቅኩ ወደ ከፍተኛ ህክምና ስደርስ ተኝቼ ነበር። የእኔ የሙቀት መጠን ግን መደበኛ ነበር። ሐኪሞቹ የሙቀት መጠኑ እንደሌለኝ እና በሚቀጥለው ቀን ጠዋት ሊጠይቁኝ ሲመጡ በጎኔ ላይ ያለው ምቾት እንደጠፋ ሲመለከቱ በጣም ተገረሙ; ተአምራዊ ማገገም አደርግ ነበር!
ከጥቂት ቀናት በኋላ ከከባድ እንክብካቤ ተፈታሁ። ከአንድ ሳምንት ገደማ በኋላ በእጄ ጀርባ ላይ ሽፍታ ተፈጠረ። ከጥቂት ቀናት በኋላ ሽፍታው በመላ ሰውነቴ ላይ መሰራጨት ጀመረ። ስቴሮይድ ቅባቶች ታዝዘዋል, ነገር ግን ብዙ የረዱ አይመስሉም. ስለ ሽፍታው በጣም አልተመቸኝም ነበር፣ እና አለመቧጨር ከብዶኛል።
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.
