Summary Text

SUMMARY: First diagnosed with myeloma October 2011. Recruited onto clinical trial Myeloma X11 (Lenalidomide) at Bristol Oncology and Haematology Centre. First High Dose Therapy and Stem Cell Transplant (HDT&SCT) in July 2012. On maintenance until June 2017. June 2018 recruited onto Myeloma XII trial (Ixazomib). December 2018 Second HDT&SCT. On maintenance until February 2020. August 2020 Commenced treatment involving Daratumumab. April 2021 relapsed. June 2021 recruited onto Cartitude 4 clinical trial and infused with CAR-T cells in October 2021. My own immune system is now fighting the cancer . I am exceedingly fortunate.


Thursday, 12 October 2023

October 2023


As the summary above indicates, I was infused with my CAR-T cells in October 2021 and thus two years ago:



During that time, my myeloma became undetectable, I have not needed any any anti-cancer treatment, and my quality of life has improved immeasurably.  I have seen many more dawns and sunsets than I had the right to expect.  Together with Margaret, I've had a holiday in Cyprus and another where we finally cruised to Norway.  I have even returned to my duties as a Volunteer Listener with Samaritans.  I have every reason to celebrate this anniversary.

Just 10 days ago I had my first cataract surgery where my natural eye lens, which had become cloudy with age, was replaced with a plastic one.  The operation went very smoothly and within 4 days my sight was almost back to normal.  I had feared about driving, especially at night, but I found that the reduced glare had actually improved the experience.  Yet again I feel so very fortunate.

Returning to the subject of myeloma, this week I had my routine clinic appointment at the BHOC.  The last time I saw a consultant was actually in July.  In August and September it was decided that I only needed to see my clinical trials nurse.  This week, the consultant gave me the news that my last two blood tests had both shown a paraprotein count of 2.  I was told not to be too concerned yet as both readings were very small and, importantly, the same.  Significantly my free light chain results currently remain normal.  It was always to be expected that the CAR-T cells would eventually deteriorate and it remains to be seen what these two readings really mean.  Of note, I was also told that all my general blood results were very good.  Having two years without any chemo has clearly made them better.

To summarise - I will just have to wait and see and in the meantime ENJOY.

When you arise in the morning,
think what a precious privilege it is to be alive
to breath, to enjoy, to love
Marcus Aurelius

Keep well, keep safe

Stephen