Cycle 2 - Mid-way check & cancer elsewhere....

Today we went to Guildford for the cycle 2 mid-way check. Because last week I had some really awful times, we wanted to flag these to TC to get their point of view.

I didn't blog about the awful times because I couldn't, I was physically unable to but I also mentally couldn't. I decided to take myself off zopiclone because I was frightened about the addictive nature of it. So I came off, and then I didn't sleep. I had a few days of absolutely no sleep at all. Not even half an hour. I was taking non-herbal Nytol (diphenhydramine), but it wasn't really working. I was also stressing about my return to work. Even though work have been fully supportive, just initiating an official process was pretty scary. So I was having a combination of no sleep, stress and therefore severe anxiety.

Last Friday, I was the worst I'd even been. I was shaking non-stop all day, it was really horrible, I couldn't get it under control. I managed to do a bit of work in the morning, but I was shaking so much I couldn't really control the mouse or keys. I had awful dark thoughts and couldn't process the simplest of things. Even the thought of letting the dogs in the garden was overwhelming. I felt really very mentally unwell.

Today, a week later, I feel betterer. I still have some shakes, but they are a fraction of what they were. I restarted the zopiclone on Monday and the very night I took it I actually slept. The night after I slept again, less well but still a few hours. On Thursday I got driven into the office (thank you Colin) and worked all day. I'm supposed to be doing a phased return and only doing 12 hours this week, but I've actually done about 24! I need to speak to the "people that be" about this as if I'm doing a "phased return", I need to do it properly!

Anyway, back to today's meeting. I turned up and had my bloods done. The nice nurse found a vein that behaved and took 4 phials and then I went off for my ECG. Obviously I was worried about my QTc given the past issues, but it was 440 which is within the protocol limits. We will get a call later with the blood results, and as long as they are normal, or within range, I'm good to stay on the highest cancer-kicking dose of 3 pills.

We spoke to TC and Avril about the severe anxiety and they listened carefully and wrote down everything I was saying. We discussed it all and they said that going forward they could prescribe me diazepam or lorazepam but that they didn't want to prescribe it immediately because of the addictive nature of it and they want me to try without. Hmmm. I understand why, but I simply cannot have another day like last Friday. TC said that the anxiety is also probably down to my oophorectomy and lack of hormones, which sadly they can do nothing about. So I kind of feel a bit stuck. I need to just constantly take the zopiclone and see what happens.

I think it was probably a combination of no sleep, coming off zopiclone, return to work stress, general anxiety (because wtf not?!), lack of hormones and fear. Now I'm back on the zopiclone and "official" work is actually not as scary as it seemed a week ago I think I can do this.

In other news, TC just casually dropped in to the conversation that when they removed my ovaries they analysed them. They actually had some cancerous cells on them. Fuck. Apparently it changes nothing about my diagnosis as they are now out (and thank god they are) but they have to tell me anyway just so I know. So going through that op was bloody well worth it then. Despite all the night sweats, hot flushes and hormonal changes that I now face as a small part of my daily set of challenges, the fact I had cancerous ovaries would have been yet another battle to face. Bloody hell!

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.

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!

I'm on the trial!

Today I had an appointment at Guildford hospital with my trial onc TC and my research nurse Avril. Avril told me that the bloods I had done last week were all within the range for the trial protocol and then she sent me off for an ECG.

I last had an ECG back in 2012 to check my heart was okay for chemo. This time I went in to the room, took off my tshirt, the lady conducting the ECG put about 8 sticky pads on me and attached clips to each of them. She turned on a machine, it beeped and less than thirty seconds later she took the pads off and gave me my printout.

We headed back upstairs and I gave my printout to Avril. We waited for about ten minutes and then were called into a room with Avril and TC. It was then I learnt that I'm on the trial! So although it's all very unknown and therefore scary, I'm on what TC says is "the best treatment on planet earth right now" for my kind of cancer. Thank you everyone who has had their fingers crossed since June 14th!

Unfortunately the results from last weeks scans weren't back, but based on my PET scan results TC was happy to go ahead. We asked him to go through the PET results in more detail, so I now know that (in addition to the lower lumbar region that I found out about last week), the bastard is also in one vertebrae higher up and my pelvis. At least this explains the pain. It does upset me as he originally told me it hadn't spread, however, TC said these mets may have been there all along and at the start of this shitty journey, I hadn't had a PET scan. I.e. The mets would not have been picked up on just a CT and bone scan, it needed the more detailed PET scan to spot the buggers. The other thing he mentioned was a slight "something" on my lung. This frightened the hell out of me. However, he said the PET scan shows cancer through cell activity taking up glucose and this 1p sized area was not doing that, which makes it unlikely to be cancer. So scarring from a previous infection or something similar. Obviously, having been dealt blow after blow, I want to believe what he says, but it is still scary. Now I'm on the trial, I will be monitored fastidiously, so if this area does turn out to be suspicious, at least I'm having scans etc that will keep an eye on it. TC said he wasn't concerned about it, I just have to trust him.

We then had to wait for over 2 hours for my meds to be dispensed. Apparently because its trial medication, it will always take this long. Eventually we got my drug stash and had another meeting with Avril. She went through how to take them and also gave me a tick chart to ensure I mark off having taken them every day. This really satisfies my Jo-CD. Lastly she gave me a card which I have to carry at all times. It contains details of my trial and important contact numbers. If you are ever with me and we have some sort of medical emergency, please ask for my card!

We then drove home and I took my first dose!