Sixteen years ago, Mariacristina was happily tied up in a serious relationship with an Italian boy (and to give an impression of what a serious relationship means in Italy, you should know that Italians use the same word – fidanzato/a – for boy/girlfriend and for fiancé(e)), I was a shy English teenager living in Naples for just half the year and set to move back to the UK for good within a few years. Nobody would have even contemplated the possibility that one day we would get married – which just goes to show: you never know what the future holds.
Expect the unexpected
When discussing my options after the failure of the FLAG-IDA intensive chemotherapy phase to get me into remission ready for a bone marrow transplant, the clear feeling emanating from the doctors was that the MARALL trial was not very likely to do the job, but could do, and would provide useful treatment to tie me over until the opening of the Blinotumomab (another antibody, which has shown relatively good success rates so far) trial. The MARALL trial was also seen as a ‘light’ treatment – music to a patient’s ear – in contrast to the ‘intensive’ FLAG-IDA phase, which I actually tolerated pretty well.
Right from the start the MARALL plan had to be changed, as a reaction following a dose of asparaginase back during my treatment the first time around meant that needed to be replaced with erwinase (same effect, but made differently) this time around. I then had an unexpected clash of an anti-fungal drug with a chemo drug, before contriving to skip the final session of antibodies and chemo by almost fainting the day before the end of the trial and ending up recovering from that in St George’s instead.
And yet, it worked! The results from the bone marrow biopsy I had at St George’s showed no leukaemic cells at all, meaning I’m in complete remission and can proceed to the transplant in order to minimise the chances of the disease coming back. Dr Fielding, my consultant at the Royal Free, had suggested that it would be impossible to pinpoint any success of the MARALL trial to the antibodies, or the vincristine chemo, or the erwinase, particularly as the antibodies trial is still at an early stage and hasn’t yet been tested against equivalent treatment without antibodies. So we don’t know how it worked, but importantly – it did.
I must admit: I had been a little worried at the thought of a second round of treatment failing to get me into remission, and was also somewhat dreading the idea of another trial. The leukaemia this time around hasn’t always acted in the way the doctors expected – affecting my blood counts more gradually than ALL usually would, for example – and the cytogenetics showed that it has evolved since the first time around, so it did seem a little bit as though we were fumbling in the dark. Perhaps this partly contributed to the delight of all the doctors when it was clear the antibodies trial had been successful…
Similarly, had I got into remission with the FLAG-IDA treatment, it wouldn’t have been nearly as exciting; it was generally expected that I would have reached that point then, and it was meant to just be a normal step along the treatment path. Once things got more complicated, though, it was always going to be a particular relief when I managed to get there.
It is strange, too, in a way, though, to reach such an important milestone – I’m actually cancer-free – while knowing that what is likely to be the toughest part of the treatment is still to come. During my original treatment, an unrelated bone marrow biopsy was considered early on, but it was decided that on the balance of risks, it wasn’t worth it. This time around, particularly as the long-term maintenance chemotherapy that kept the leukaemia away after my first fight with it only kept it away for a limited time, we need to hit it with something different, so the transplant is the best option – and it would be more ‘risky’ not to have it, as the leukaemia would almost certainly come back pretty soon.
So now the preparations for the transplant has begun (in the meantime I’m on some light maintenance chemo and steroids, to make sure I don’t relapse in the next few weeks), and I have various appointments at the hospital to check various organs are in a fit state to put up with the rigours of the transplant.
We’ll be sitting down with the doctors early next week to discuss all the details of what it’s going to involve, but for now, with the donor situation looking positive, the tentative planned schedule is for the process to take place in the middle ten days or so of March – dependent on various other factors.
It’s great to have got to this point, though a little nervewracking, too, but I’m not going to worry too much about the transplant itself while I still have these wonderful, neutrophilled days to enjoy before it kicks off for good! As you can imagine, Mariacristina have been making the most of life while we can – even enjoying some sunshine during a wonderful day in central London today…