The final few months of Romy’s immunotherapy was a difficult time for us mentally. The immunotherapy phase spans 6 months, and is more of a steady and less intense phase of treatment. We had been through so much intense treatment for the year prior to this and had been running on adrenaline so much of the time, but as we progressed through the final few cycles of immunotherapy the ‘end of treatment’ goal was ever closer in sight. But so was the unknown. With so much time having passed since any sort of chemotherapy, the thought of relapse was never far from our minds and we were well aware this remained/remains a possibility at any time. Romy received the full ten days of her final anti-GD2 infusion and then a couple of days into the 14 day Retinoic Acid schedule, once again we ran into problems. First we noticed a tremor in her hand, then came nausea and extreme tiredness. Retinoic Acid, normally the better tolerated of the two parts of the immunotherapy treatment, had caused numerous problems for Romy and she had already had a dose reduction back in December due to concerns with toxicity. Everything had settled down for subsequent cycles of this drug, but now she suddenly seemed so poorly. She could not even stay awake in the buggy on the busy Dayward or in the bustle of the hospital corridor, and we were really concerned something was seriously wrong, the biggest worry being a relapse. She was reviewed and was given a further dose reduction of Retinoic Acid on the basis that the symptoms were similar to those that appeared prior to the first dose reduction in December. We returned back to the flat to see if a dose reduction would resolve the symptoms over the next couple of days. However, later that evening we found a new and rather bizarre worry and, as Dayward had closed already, we decided we had to visit A&E with this new discovery incase it needed urgent attention. It was a phenomenon we discovered purely by chance, as when hugging Romy and my head was pressed to hers, I realised I could hear a noise coming from inside her skull, like a constant grinding noise. When questioned, she could also hear the noise. The Dr’s in A&E were a bit baffled but knew little about the standard protocol of treatment she was on, or any of the possible side effects anyway. In fact, I had to tell them what some of the drugs were when they referred to her medical notes, so without any immediate concerns everyone agreed we could return to the flat and wait for her own Oncology Dr’s to have an input on what could be causing this. Google had revealed that there is a type of tinnitus, objective pulsatile tinnitus, that can be physically heard by a Dr listening to a patients skull and that it is mechanical as opposed to the much more common subjective tinnitus which can only be heard by you and nobody else. It was reassuring to know that such a thing existed, as hearing this constant grinding noise coming from inside our child’s head was disconcerting. The next day, even her oncologist seemed to be quite surprised by this turn of events. These treatments are so new and this disease so rare that there is little evidence to go on, although normal ‘subjective tinnitus’ is a recorded side effect of Retinoic Acid, so it was quite probable that it was the Retinoic Acid that could be effecting her nervous system and causing the pulsatile tinnitus. After some deliberation with the team it was decided that Retinoic Acid seemed to be causing too many issues and they decided we should abandon administering it altogether, ahead of its scheduled end point. We had suddenly gone from thinking we had almost two weeks left of treatment, to it suddenly ending earlier than expected, however I was certainly glad to be done with this devil of a drug. Romy’s lethargy and nausea diminished as the Retinoic Acid worked out of her system, but the pulsatile tinnitus continued to be physically audible to us if we placed our ears near her head for another 4 long days. This had been the second scare in as many months and now we had nothing to do but nervously wait for the end of treatment scans and tests to be completed.
Helen & Tom
