End of Cycle 1

At the moment it feels like I'm having non-stop hospital visits. It's so draining and I just want some normality back in my (and Rob's) life.

It feels like Groundhog Day. We went to Guildford hospital, I had my bloods done again, had an ECG done again and then met with Avril. We talked through my symptoms and about how sad I feel. I just really feel low. I need to pull myself out of this pit of sadness but at the moment it just feels like I'm wading through sand. I told Avril about my tooth pain and she said I was to keep an eye on it. She also checked my last bone scan and there were no mets in my skull or jaw which is a good sign. It doesn't explain the pain though, perhaps I have been clenching my teeth in my sleep but it just feels really localised.

Anyway, after an hours' delay, we met with TC. My QT rhythm was normal so I'm back on the largest dose of ribociclib - 3 pills. I'm bloody nervous of this but I have to try and trust that they know best.

I asked TC about the dependence on zopiclone and he said not to worry, if it's helping me sleep then just to carry on with it and prescribed me another month's worth. I hate how it gives me a metal taste in my mouth though and also that I just don't fully sleep still. Everything I have read about it says that it's addictive, you shouldn't take it for more than 2-4 weeks (I've been on it for about 2 weeks now) and that you should only really take it if you can guarantee 7-8 hours sleep. I definitely am not getting that, I wake up all the time with night sweats. I'm struggling to know what to do!

We then had to wait around for 3 hours(!) for the next cycle of prescriptions to be dispensed and eventually we drove home.

QT Check and update

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.

Cycle 1 - Halfway check

So I've just had my two week check for my first cycle on my trial drug. Rob drove me to Guildford and we met with Avril (the research nurse), she sent me off for my blood tests. I had to wait for about an hour for my bloods to be taken and once they were done we met Avril again. I was feeling really anxious and shaky, we chatted about the side effects I've been having and I was then sent off for an ECG.

Common issues from my trial drug at this point are low blood counts, rarer are issues like heart problems.

We were waiting to meet TC when Avril came to see me and told me there is an issue with my heart rhythm. Fuck. The QT something or other was too high. I had to wait for an hour and then have another ECG.

We were waiting for ages to see TC, and when we were finally called in, my second ECG also showed that the QT rate was too high. The rate had reduced since the first one, but not enough for the trial parameters or to actually be safe. Therefore they've taken me off the trial drug for a week but I still continue with letrozole. 

TC said not to worry and that at the start they will always play around until they get the dose right. Easier said than done though. I guess it makes sense, as why would a dose for me be the same dose as say a 15 stone woman... I have to go back in a week for a repeat ECG and then they will look at what to do, probably reduce my ribociclib dose down. I've just got to hope this is what happens rather than getting taken off it all together.

I also told TC and Avril about my lack of sleep. Although when I take the diphenhydramine I manage to sleep fitfully (as in I still wake multiple times a night but I manage to fall asleep again after the night sweats), it still isn't good sleep. So he's prescribed me something called zopiclone which I will take tonight:

Zopiclone boosts the effectiveness of a chemical in the brain called gamma-aminobutyric acid (GABA). GABA blocks transmission across nerves in the brain and has a calming effect. By boosting the effectiveness of GABA, zopiclone improves sleep.

Then yet more waiting until I had my adamantium which was pretty much the same as last time, apart from the fact every chair was full of different people receiving treatment. When I last had it, I had the ward to myself. I've just got to hope I don't get the horrible pain tomorrow like what happened 6 weeks ago, please please!