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!

Where are you Sandman?

Until this shituation arrived, I never realised how much I took for granted. Walking, driving, sleeping, working, thinking. All of these and more have been taken out of my hands since treatment started. I manage to walk now most days as mercifully my pain has reduced. However, I have my adamantium again this Friday, the day after the last time I had it, the pain was awful, I was crying out, I'm crossing everything this won't be the same again. Other people have said the first was the worst so I really hope this happens for me too.

Anyway, this post is about sleep, or lack thereof. For the past week, I have had really awful sleep. As in I haven't really had any. The other night I watched the clock tick by, hour after hour with no sleep coming. Then, the night sweats arrived. These are a hideous side effect of the menopause, which are exacerbated by my letrozole. One night I had 18 in a night, they keep you awake, or if you are asleep, they wake you up. You end up "sweating" the bed. Sometimes it's a minimal sweat, sometimes it's a full on drenching, Whichever it is, it's not pleasant.

Unfortunately, because of my oestrogen positive breast cancer, I can't take HRT, so alleviating the symptoms has to come another way. I called my trial team to discuss and they recommended a few drugs, we had to wait a few days to hear back from Novartis who are the trial owners, and unfortunately I cannot take them.... Bollocks. I also cannot take any natural sleep aids (though they wouldn't help with the sweats) like herbal Nytol, Kalms or anything else similar. 

My trial team also told me I could change my letrozole brand back. When I took letrozole for a week before I took my ribociclib, I was on a brand called Dr Reddy's. When I started the trial drug I was given a new brand called Manx Healthcare. Before the trial I had very minimal night sweats, since starting the trial drug, the sweats have started. It could just be coincidence (as I'm getting further away from my oophorectomy and therefore the side effects from that could be kicking in), but they've said I can switch back, so I've done that for the past 3 doses. It will take a while for my body to get rid of the other version and may make bugger all difference, but it's worth a try.

Rob has very kindly bought me something called a Chillow. It's basically a cool mat which you put in your fridge. It is full of a gel which becomes cool and then at night you put it in your pillowcase. When you lie on it it's supposed to keep you cool. I've tried it for two nights now, it does keep you cool for a few hours, but then heats up with the warmth of your head. You can turn it over, I'm not sure how effective it is to be honest, but it's something. We also have the free-standing fan going. 

So last night my sweats reduced, thank goodness. However, I didn't sleep. At all. It was awful. Again I watched the hours tick by (this time metaphorically as I try not to look at the time on my phone), watched the sky get lighter, twisting, turning, getting hot, shivering, it's just awful. I ended up moving beds in the end. I think I slept from 5:30-6:30, that's it. Today I am beyond exhausted. We are going to try sleeping under sheets rather than the duvet. We have been sleeping under a duvet and also tried a quilt but neither are ideal. Let's hope the sheet idea works even a little.

I took a call from my trial team earlier today, I'm allowed to take diphenhydramine! This is a sleep aid which is an antihistamine that works by reducing histamine which stimulates your mind. My mum has picked me a Nytol version up today, so I will try taking one tonight and hoping that it works.

So my magic (hopefully) combination will be: 

Fan + chillow + diphenhydramine + sheet + new-old letrozole = sleep....? 

Fingers crossed! 

Not so brave

This is both physically and emotionally exhausting and some days I really struggle to cope. Today is one of those days. I cry from overwhelm, I cry at the situation I am in, I cry for the children I'll never have, I cry for the life I won't live. I cry because I feel ill. I'm not brave today.

I feel hot, I feel cold, I feel tired, I feel sick. I feel fed up. I'm sick and tired of feeling sick and tired. 

Last week I tried so hard. I had a panic attack on Sunday. It was exhausting and terrifying. I was enjoying a lunch with some friends and all of a sudden, this crushing overwhelming panic exploded in me and I had to get out. I got outside and sat on a bench crying and shaking. Rob got me in the car and I sobbed and hyperventilated the 40 minute drive home. We got home and I crashed on the sofa, it really took it out of me. Monday I still felt awful. Michelle came over in the afternoon, hugged me and I just sobbed. Full on blobby tears of emotion. 

On Tuesday I turned a corner, I worked from home and I had my counselling, the counselling really helped. We explored the fact that so much has happened to me over the past 11 weeks and that even one part of what I've been through would break some people. We also explored my panic attack, identified potential triggers and talked through both some psychological and practical ways of coping in the future. He helped and I felt good.

The rest of the week I continued to improve, I was more like me. I worked from home, really properly worked every day, I walked the dogs, I went to the cinema with Michelle, we all saw a glimmer of Jojo returning. 

But then blam, I feel shit again. It started last night with severe pain in my lower back and hips. I took ibuprofen and omeprazole and it started to go. I had a good nights' sleep, other than waking up feeling hot a few times, but when I woke up in the morning I needed the loo. I took my 5 tablets and then went to the bathroom. What followed was forty minutes of the most painful constipation ever. It reminded me of the awful constipation I had on chemo. This is gross but I've always strived to be honest in my blog.... The poop was so compacted and hard it was making me cry out in pain. Rob had taken Fagin to the vets for a check-up and I could hear Poppy crying downstairs, but I couldn't get to her. It was just stuck and sore and not going anywhere. When I finally managed, oh the relief! Once I'd been, although I felt better there I began to feel meh.

I got downstairs onto the sofa at 09:45 and I haven't moved all day. I feel dreadful, but mercifully not in pain. I feel hot and cold, so so nauseous and just not right. I don't know if these are side effects of the new pills or what, but I'm not good. All I've managed to eat and drink is a glass of water, a smoothie and an iced lolly. It's almost 8pm and I'm still on the sofa now. I feel guilty for not embracing every day I have left, but sometimes I just can't. But I'll try again tomorrow.

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!