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“My leukaemia remained stable over the next couple of years, but I never came close to Deep Molecular Remission. This didn’t concern my doctors until late 2019, when my Leukaemia started to make a slow but sure return. I’d been through the “I’m going to die bit” years previously, so I was relatively calm about the future. Although I did arrange a weekend in London with my two daughters where we went to see a play, then an evening at Ronnie Scott’s, lovely meals, and a nice hotel… you can never have too many ‘great’ memories with your loved ones.
A few weeks later I stumbled across an article that was talking about a new Leukaemia drug undergoing trials called Asciminib, and that it was looking very promising, apparently it was taken in conjunction with Imatinib and improved its effectiveness. As luck would have it, my assessment at the hospital was the next day. We were going to discuss the alternatives to my Imatinib treatment, which we did. At the end of the discussion, the doctor said that there was another option, but he couldn’t guarantee that I could take it. He said that they were running a trial with a new drug called Asciminib. I interrupted him and said that I would very much like to go for that option please.
A week later I started the trial and within 6 months I reached Deep Molecular Remission. I kept this secret for a while and surprised the family with the news at our Christmas dinner that year. It wasn’t long after, that we went into lock-down with the COVID pandemic. I was lucky to survive this period unscathed, but I have to admit that I loved every second of it. I got to spend quality time with my family, I found time to paint, write more books, exercise, and get fit.
After the Pandemic my health began to deteriorate. My Leukaemia was still stable, but I started having issues with my blood pressure, heart, lungs, joints… and inevitably weight gain, which only succeeded in exasperating my issues. I’d always put a brave face on all my side effects, the aches and pains over the years, but I decided that I needed to get things sorted. So I approached both my Leukaemia doctor and my GP, and between them we put together a plan. We tackled each problem one at a time, starting with the blood pressure. The Leukaemia doctor thought that the blood pressure drug I was taking could be reacting to the Imatinib/Asciminib meds. So, with a few experimentations we found a combination that appeared to work. After that I had detailed examinations of my heart and lungs, steroid injections for my knee joints, physio, new asthma drugs etc…. I am now at the point where I can see light at the end of the tunnel and am looking forward to another family Christmas… which is just around the corner.”
Anthony’s journey
You can read Anthony’s initial account of his Spot Leukaemia story here.
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