Last Friday we went back to Guildford for my QT prolongation check-up. I had an ECG and had a sneak peak at the numbers, one was 310 and the other was 440. The last time the magic number was 481 so both of the numbers were under that. We waited for quite a while as TC's clinic was running an hour late. We were called in and then told that my QT rhythm was back to normal. Good stuff. TC then said that I had another week off the trial drug due to how the cycle works....
4-weekly cycle:
- 1 Letrozole tablet every day
- 1 Calceos (calcium carbonate and vitamin D3) tablet every day
- 3 Ribociclib tablets for 3 weeks, then 1 week off
At the moment I'm on week 4 of the cycle which means no Ribociclib. This Friday (1st September), I'll have my end of cycle check. This includes another ECG, bloods and vitals. As long as my ECG shows my QT rhythm is fine I'll be going back on 3 ribociclib pills. To be honest this does frighten me a bit as what if it negatively affects the QT rhythm again? I also had lots of side effects when I was on the ribociclib (in addition to the QT rhythm): nausea, constipation, diarrhoea, severe anxiety, insomnia and fatigue. I'm shit scared of getting them all back again.
Since coming off the ribociclib for the fortnight, the only symptoms I've had from the above list are anxiety (but much less so), insomnia and fatigue. Obviously I've still had other side effects (hot flushes, night sweats, bone pain in various areas, thinning hair, weight loss and emotional swings), but I'm not sure if they are attributable to the cancer, menopause or letrozole. I've also had a metallic taste in my mouth but I know that is because of the zopiclone. The zopiclone is helping me sleep by the way! I'm still waking a few times a night, but nowhere near what I was. I'm nervous about becoming dependent on it though. I'll be discussing with TC on Friday as it's important I'm able to sleep without relying on pills.
At the appointment last Friday, I mentioned to TC that I'd had some bone pain, he said it was more than likely the cancer dying. Let's go with that! Last time I blogged I said I was having zometa and was worried about the potential pain. Am pleased to report that although there was some pain the day after, it was very minimal compared to last time! Having said that, it actually has increased in the past few days, especially in my sternum and lower spine. This does make me nervous that it's the cancer spreading but I have to just hope that the systemic treatment is doing its job.
I went to the dentist today as I've had some pain in the upper left side of my mouth for about two weeks. It's not constant, but it is noticeable. The dentist thoroughly examined the area and gave me an x-ray but said he could not see anything obvious causing the pain. Rather than reassuring me, this makes me catastrophise that I have bone mets in my jaw and skull. Another thing to mention to TC on Friday....
In other news, and a bloody big achievement, yesterday and today I drove myself to the office. It may sound like nothing, but until a fortnight ago I hadn't driven for a few months as I was simply unable to due to pain. It's also a massive step because I hadn't physically been in the office since before my diagnosis. It felt weirdly normal to be there. Almost like I hadn't been away. I guess because I've been working from home when I've been able to, it's not like I'm out of the loop when it comes to the actual work. I'm really proud of myself for making the step and going in. It's a step forward towards some normality and gaining some form of control over this bastard disease.
