I trust you will forgive the lack of post for September or October but, apart from a routine visits to the BHOC for blood testing, there was nothing to report.
On the 8th October 2021, three years ago, I was admitted to the ward in the BHOC in preparation to be infused with my CAR-T cells. Prior to that date I had been given the wonderful news that I was to be recruited onto a clinical trial called Cartitude 4. The trial sought 400 recruits worldwide. Half would receive standard treatment whilst the others would receive the CAR-T cells. All 400 were required to undergo a huge number of screening tests to ensure their eligibility. Only later did I receive the incredible news that I would be in the second group and thus receive the CAR-T cells.
Having arrived on the ward I was to receive two chemotherapy drugs being cyclophosphamide and fludarabine as "conditioning" and seemingly to reduce the number of myeloma cancer cells. They would be given over three days after which I then had unexplained temperature spikes. This meant that the infusion of CAR-T cells was be postponed. Two days later, and with authority from Janssens in Boston USA, I received the infusion of CAR-T cells on 15th October. This was undertaken with multiple hospital staff witnessing and, importantly to the strains of "Give me Sunshine" by Morecambe and Wise.
The cells arrived deep frozen in liquid nitrogen in a container which I described as "looking like an undernourished adolescent Dalek".
The cells being so valuable had been packed with their own aluminium cassette. The bag containing them then had to be warmed up before infusion could take place.
To minimise any damage, the cells were infused by gravity through a canular.
During the early hours of 25th October, my temperature rose to 38.7 and causing much concern. Given that I was now neutropenic there was a possibility that I had an infection and samples were rushed to the laboratory. The staff were very concerned and I was now shaking uncontrollably. Later that day, despite being given paracetamol, my temperature had risen above 39 degrees.
The warning "Be careful what you wish for" became significant since when the new cells get to work, the body may release an excess of cytokines producing the very symptoms I was now experiencing. I had almost hoped for Cytokine Release Syndrome (CRS) which would show that the CAR-T cells were active but the looks of the nurses and doctors clearly indicated their deep concern. Only once infection was ruled out could I be given the drug Tocilizumab which fortunately brought things under control very quickly.
Remarkably I was allowed home on 29th October. It had been a very memorable stay in the ward and I remain. even to this day, in debt for the highly professional treatment and care I received.
So why is this month is so very special? I have just seen my consultant and my myeloma remains undetectable, now three years later. No paraprotein had been found and my light chains were normal. Sadly the treatment I have received has not been made available in the UK.
I am the living proof of its effectiveness.
When you rise in the morning, give thanks for the light, for your life, for your strength.
Give thanks for your food and for the joy of living.
If you see no reason to give thanks, the fault lies in yourself.
Tecumseh
Keep well
Stephen
