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Patient experience of CAR T-cell therapy

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Matthew is a 27-year-old patient who was diagnosed with Acute Lymphoblastic Leukaemia in 2015. Unfortunately, the normal treatment - chemotherapy and non-related bone marrow failed. He was eligible for a clinical trial at Kings College Hospital in London and received a CAR-T therapy. Matthew is telling his personal experience about this breakthrough treatment that has saved his life.

I’m afraid around 50% of your bone marrow is made up of blast cells”. That’s not exactly the news you want after already enduring UKALL14 induction, two rounds of FLAG-Ida and a non-related donor bone marrow transplant to treat your acute lymphoblastic leukaemia.

Nonetheless these are the words that I heard. Instead of being upset I immediately started thinking of how I could overcome this obstacle. Whilst those around me were shocked and emotional I somehow saw this as a challenge.

After being given my options, I dismissed them all other than the groundbreaking CAR-T therapy I had read so much about in the news. This was the treatment I wanted, no, this was the treatment I needed! The only problem was that it was still in phase one and two clinical trials, most of which were in the USA and had a cost of around five hundred thousand pounds, all of which had to be covered by the patient!

I was referred to two doctors running clinical trials but I was not eligible for either. In the meantime I was receiving vincristine and prednisone to control the disease. I also had blinatumomab approved and my consultant worked hard to put together a protocol and ensure the right care was in place for me to have it, but it was not to be.

After a lot of research and contacting various key people I got a link to the Leukaemia & Lymphoma Society in the USA. I followed the link to the website and found there was an instant chat feature. I typed in a message explaining my situation and that I was looking for CAR-T treatment. To my surprise, within a couple of minutes I received a reply. The message said that there was a trial running in London and there was a link to the trial on the clinical trials website! I couldn’t believe it!

Looking at the trial description it was based in London and I looked eligible. I recognised the name of the lead doctor and emailed him.

I had sent the email on a Saturday afternoon so I wasn’t expecting a response until the following week but to my surprise I got a response the same day! It said that I looked like I could be eligible but no promises could be made and that the treatment was highly experimental as it used donor T-cells unlike other treatments.

After some communication between the trial doctor and my consultants I had a bone marrow biopsy and multiple blood tests to ensure I met the trial criteria. To my relief all of the tests showed that I was eligible for the trial.

However there was yet another hurdle. Whilst having the vincristine and prednisone I had been receiving antifungal prophylaxis. This had raised one of my liver enzyme levels above the acceptable level for the trial. Unfortunately I lost my place but over the next two weeks my liver enzyme levels normalised and I was fortunate enough to get another slot.

When I eventually went to Kings College Hospital London I received 5 days of chemotherapy to ready my body for the CAR-T cells. I then had a rest day before having the cells the following day. After all of the buildup it was an exciting moment for me. As I looked at those cells being pushed into my PICC line I felt a great sense of optimism that they may just be the thing that would give me my life back.

Almost a week passed and there was no sign of activity from the cells. Then around a week post infusion, I started to get a fever. The fever continued for several days and was controlled with paracetamol. I recall the times when my temperature rose as the paracetamol began to wear off as being rather uncomfortable but not unbearable.

A few days later I started to get a pain in my lower abdomen so I was sent for an ultrasound. To everyone’s surprise I had appendicitis! At this point I was anaemic, neutropenic and had a low platelet count so operating would be risky but a ruptured appendix was also not desirable.

There was some discussion between the Haematology doctors and the surgeons. Haematology wanted to give me antibiotics and see if it settled the appendix as they thought it was a side effect of the CAR-T cells, whereas the surgeons were keen to operate.

I was moved down to intensive care. I remember going there with a raging temperature, I was using wet paper towels to try and keep myself cool. When I reached intensive care I felt asleep, fully expecting to wake up in a few hours with my temperature creeping up. However, my temperature remained normal. When the doctors came to see me in the morning they were surprised to see that I no longer had a temperature and the pain in my side had gone, I’d made a miraculous recovery!

A few days after being in intensive care I was discharged. After almost a week I started to get a rash on the back of my hand. Several more days passed and the rash began to spread all over my body. I was given steroid creams but they didn’t do much to control it. The rash made me feel very uncomfortable and I found it very hard not to scratch.

One weekend I noticed the lower part of my back was swollen and felt like it was full of fluid. I phoned the on-call haematology doctor who advised that I go to A&E. After being looked at by a doctor I was admitted to hospital, just a couple of days sooner than had been planned for my second bone marrow transplant. I was given oral steroids which got the rash under control.

Finally after another grueling bone marrow transplant I was able to go home. Since then I have continued to regain my health and strength both mentally and physically. I was fortunate enough to not get any serious infections up until 11 months post the second transplant when I got a fungal chest infection which meant I was hospitalised again for 10 days. Other than that I have continued to rebuild my life, returning to work, starting to exercise and finding my new normal which is somewhat different to my old way of life, but also amazing in its own right!

Lastly, I am so grateful for all the people mentioned in this story. All my family and friends who supported me. All of the doctors, nurses and healthcare staff who cared for me. All of the scientists and researchers who worked on the drugs and treatments I received. All of the blood donors, my two stem cell donors and people who donate and work for the charities which compile the stem cell register. Thank you.