How am I……

The problem with my current ‘will it/won’t it’ work limbo, combined with the delightful fatigue that’s accompanying Pembro, is that I have far too much time to think. Thinking is obviously a pretty good thing most of the time but I’ve now spent 6 years thinking rather a lot about cancer and for nearly 4 of those I’ve spent far too much time thinking about dying and trying not to (think about it or do it!).

My most recent treatment has left me feeling utterly wiped out and so I’ve spent a lot of time trying to organise my thoughts in to something useful. On the one hand I am relishing the fact that other than being tired I feel very well and until I’m told otherwise I have to hope that the immunotherapy is doing its job. However, on the other hand, I am wishing away the weeks so I can find out whether Pembro is working its magic. The worst thing is, is that this isn’t the first time I’ve been in the this position – over the last 6 years there have been numerous obstacles in the form of significant scans that leave me mentally paralysed. So, the feeling is very familiar but it’s also very boring. I’m bored of feeling stuck, I’m bored of feeling cross with myself for worrying and then forgiving myself because I’d be an idiot not to, I’m bored of the sound of myself saying ‘yes, feeling fine, hoping it works’ and yet there’s no way round it this is my reality.

However, in relation to answering the ‘how are you?’ question I figured it would be useful to explain a little more about immunotherapy and it might help a little with the confusion and misconceptions. I absolutely cannot do this in anything resembling a scientific way as it’s utterly beyond me but just in terms of the basics, here goes….

I know that for pretty much everyone, other than those who are living it with me on a daily basis, my situation seems very complicated and alien. Cancer and cancer treatment is sadly all too familiar but melanoma and the immunotherapy drugs that accompany it are not. They work differently, they don’t produce the side effects that people associate with cancer treatment but that doesn’t mean they are any less powerful and potentially any less debilitating. At its most basic – immunotherapy drugs attempt to teach your immune system to recognise and deal with the cancer cells itself whereas chemotherapy is basically poison and therefore kills cancer cells but can be fairly indiscriminate and therefore causes other side effects.

This might sounds as though immunotherapy is therefore gentler on your body and to be fair – in my case – it mostly has been but the problem with messing with your immune system is that it can then go into overdrive and start attacking itself. Therefore the potential side effects from immunotherapy can be very serious as the autoimmune reactions can cause colitis, pneumonitis, meningitis, hepatitis, diabetes, endocrine problems and pretty much anything you can think imagine.

The drugs are often on-going if successful rather than the 3 months, 6 months etc associated with chemotherapy and so for me, in the case of Pembro, I shall be having it every 3 weeks for as long as it appears to be working and I’m not producing serious side effects – so really the longer, the better! At the moment this feels pretty daunting but actually, if that first scan shows things are working, then this will be entirely manageable. I think the three doses I’ve had already just feel hard because I simply don’t know if they’re doing any good and it’s frightening to imagine what’s going on inside my poor tumour-y body if it’s not.

The other confusing thing – although I think this not specific to immunotherapy – is that for some people the drugs have worked so well that they now show No Evidence of Disease – or NED (loveliest three letters in the alphabet for a cancer patient). Sadly, this hasn’t happened for me and I have to assume that it just isn’t going to – the best I can hope for is potentially some shrinkage then stable disease. Whilst stable is obviously not as lovely as NED it’s something I’m more than happy to live with.

When I was in on Monday I attempted to quiz my doctor about whether my lack of obvious cancer symptoms and my normal bloods bode well for the upcoming scan and as always he was unable to answer. This is something else I’m bored of although I totally understand why when I ask an impossible question he can’t produce a reply.

The reality is that I know why he can’t give me an answer. My situation is utterly unique. I’ve had 18 months of Ipi/Nivolumab (which is currently the most potentially effective melanoma treatment) and it worked well enough to stabilise my disease and I only stopped the treatment because eventually my immune system went into overdrive and started making me ill. I’ve then had a further 3 months of Ipi/Nivolumab which again stabilised the disease but eventually stopped working because for me, for whatever reason, my immune system can’t seem to learn its lessons and therefore has stopped recognising the cancer cells that the treatment was supposed to teach it to identify. So I’ve had to start more treatment. I don’t know of anyone else who has followed this exact path and so, right now, there are no answers. There are all sorts of possibilities – there’s a chance that last year’s treatment may still actually be doing some good and may be slowing down any potential growth, there’s a chance that my immune system just needed an almighty kick (in the form of pembro) to remind it how to deal with the melanoma cells and there’s a chance that my luck might have run out and I’ll need to seek another treatment option. So really, of course, there’s no way of anyone being able to tell me whether it’s working or not – the only way to know anything is to wait for the damn scan results.

And just in case that wasn’t frustrating enough there’s always a chance the results won’t be clear. I am having the scan early in the hope that if it’s good I’ll be able to book a family holiday and so it might not be totally conclusive. Last year I experienced some pseudo progression in the tumours where they are essentially swollen because of treatment but haven’t actually grown but this was only made clear by a subsequent scan a month later. So unless it’s either dreadful – more tumours/larger tumours, or wonderful – smaller tumours – I may still be a little clueless after results.

Having written all this I don’t want people to think that they can’t ask how I’m doing – but sometimes I think I probably avoid really answering because as you can see it’s complicated and because I’ve been here before (or at least somewhere very similar), at various points over the last 6 years I’m assuming everyone else also finds it very dull. Funnily enough, it seems with cancer, that there are no easy answers. So, please do keep asking but I apologise in advance for my ability to provide a very clear answer.

 

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How am I……

Just ticking along…

I feel like I ought to update my blog as I’ve been a little quiet of late but to be honest there’s really not a lot to say. I’m still in limbo. I’ve had two doses of Pembro (third one due next week) and thankfully the second dose didn’t lead to the horrid joint pain I got after the first one so I’m hoping that was just a freaky one-off. I seem to be quite tired for a few days after treatment and I’ve developed another large splodge of vitiligo on my arm but other than that no other side effects so I’m relieved to be getting off quite lightly but also a little nervous that limited side effects might mean the treatment isn’t working….. but it’s probably best not to go there. For now, I’m trying very hard not to worry until I’m told there’s something to worry about but to be honest the fears do keep bubbling up. I’m very frightened that Pembro won’t work for me and that when I have my scan next month it’ll show that all the existing tumours are growing and that there are more. Physically, I feel fine but there are the odd niggles which are just as likely to be paranoia as anything else but it’s hard not to worry that a slight ache in my back is down to tumours in the lymph nodes growing because that’s what happened back in 2013. I also know that these pains could just as easily be the fact that my back is always a bit shit and that some of the exercise I do can lead to various aches and pains and actually that’s almost certainly what’s going on but then I spent the summer of 2013 saying something very similar. However the big difference is that at that time my bloods weren’t ok, I wasn’t eating and I felt dreadful and that’s definitely not how things are right now. The problem is that these thoughts go whizzing around in my head all the time. It’s an endless cycle of – should I worry about the back ache?…. Is it down to the exercise?…. Probably…… Isn’t that what I thought in 2013?…… Ah, but there was loads of other stuff wrong then too…….So, probably ok then……… It’s quite exhausting.

However, despite the simmering paranoia, I am determined that this period between starting treatment and my first scan can’t be wasted. I am doing lots of nice things – catching up with friends, lunches, galleries, lots of reading and generally enjoying my life as a lady of leisure. It was Andy’s birthday last week and like all birthdays and milestones it felt precious and I love that I was spending it with him. I shall never be complacent about how lucky I am that my months have stretched into years and so every occasion deserves to be enjoyed.

 

 

Just ticking along…

Taking back a bit of control

As I’m sure you all know the skin is our biggest organ but my skin and I really don’t get on very well. In the battle between us it seems that my skin is winning. Six years ago a simple little mole decided to get all cancerous and that has led to surgery, lymph node removal, and the battle scars to show for it. As well as that, the treatments that I’ve had to combat the cancer have led to further moles being removed, a recurrence of my childhood eczema, generally very dry itchy skin, occasional delightful facial flushing and increasing areas of vitiligo – in which the pigment disappears leaving white splodges.

To be fair – with the exception of the actual cancer (which is a bastard) the rest of it is all pretty manageable but today I decided it was my turn to take a bit of control and so I now have 3 very beautiful cedar trees and 4 very tiny little birds tattooed onto my upper arm. To me, they are unbelievably pretty but they are more than that – they are a symbol of life and hope and just for once – me being in control of my skin.

(Sorry it’s the not prettiest picture. It was only done a couple of hours ago so needs a little time to settle down).

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Taking back a bit of control