After my first transplant I was discharged earlier than I thought I would be on June 7th 2024, it was good to be home but unnerving as it felt that I was no longer in the safe enviroment of the hospital and access to all the expertise I had experienced. In the early days there was still lots of tests and visits to clinic to check on progress, I was continually feeling better and regaining strength although due to my immune system being low contact with others was very limited. A key piece of monitoring progress is called Chimerism, this is looking at what percentage of cells are yours and what are donors. Generally my white cells were 90% donors which was good but my whole blood was about 65% donor which was hoped to improve to over 90% over time. By August this started to drop so a DLI was suggested and by November this was planned, this is basically a top up of donor cells, this took place in January 2025 and was a simple injection of donor cells that had been kept frozen for this purpose. There was no real improvement so a second DLI was given in April which was a much larger top up by infusion but was still a simple procedure. By June there was still no improvement and my Consultant said that it was possible the AML was returning by what is called Ancestoral Clone cells. A third even larger DLI was given in July to try and kick start the donor cells but by August the Chimerism had dropped to 36% and Biopsies were beginning to show that the AML was returning. By October this was proved and various solutions were looked at, one of which was a possible second transplant from a new donor, another was permanant Chemo, or a third was basically a watching brief and just let things take their course. A second transplant would either involve severe Chemo for a short period or a longer period of less severe Chemo before going to Transplant. As I was not for giving up after discussions with my partner Anne and my Consultant we decided the longer less stressful Chemo route was the best option. By November the AML was showing up in increased Blasts counts which are immature rogue cells which can turn into the full Cancer cells. It was decided to start the Chemo on 18th November which would consist of ten days of a different type of injection to previous which is called Cytrabine and running alongside this 28 days of Venetoclax tablets for the first round with maybe more rounds after.
To be continued.
