A very good week

What a truly incredible week. After months of anxiety and uncertainty about whether I’d made the right decision about treatment, whether the treatment would work, what would happen if it didn’t – Monday’s good scan results were just brilliant. I’m still revelling in the lovely feeling of knowing that in the very unfair battle between the treatment and the cancer – the treatment, for now, appears to be winning. I’ve said before that I hate the battle analogies as it always suggests that there’s an element of choice or that if you die you’ve not fought hard enough which so clearly isn’t the case. However in relation to the specifics of cancer and treatment I do feel as though the two things are pitted against each other and I’m always at my happiest when the treatment is winning! As well as the obvious – regression in tumours is far superior to progression – it also makes the 3 weekly Pembro infusions with their accompanying fatigue very very worthwhile.

As the news on Monday was so good we were therefore able to book a holiday. For the last 6 years we’ve always had to book very last minute as it’s so hard to make any plans until I know if things are looking good or bad scan-wise. The downside is that there are fewer options and they tend to be more expensive but generally we always find something lovely and this year looks to be no exception. We’re going for a full two weeks – which is a first for us as a family. Miraculously for the first time since 2013 I’ve also managed to find travel insurance that’ll cover the melanoma. When I last tried, countless companies turned me down as they objected to various aspects of my disease (as did I) but it shows how much the landscape of melanoma treatment has progressed and changed. The insurance system recognised Pembrolizumab as a treatment, plus, unlike last time, I’m on an approved treatment rather than a trial, no longer on strong painkillers and am feeling active and well. The process of getting insurance is still pretty grim as you get asked exactly where the cancer has spread to and found myself nervously saying that no it hadn’t yet spread to my brain or my bones but it is lurking in my liver and lymph nodes. It’s a very stark reminder of what a shitty disease cancer is and not an experience I’d like to repeat too often but at least – unlike last time – they actually approved me.

However the most amazing thing this week has been that Oscar, my eldest, finished primary school. This was always going to be a momentous day – all parents must find these milestones quite emotional but as I sat there yesterday in his Leaver’s assembly I really was struck by what an incredible miracle it was for me to be there. Oscar was just starting year 3 when I was told I had months not years and I genuinely couldn’t really imagine seeing him get to the end of that year. Every year since I have been struck by how extraordinary it is that I was there for the end of year 3, year 4, year 5 and now year 6. I couldn’t be more proud of how amazingly he has done. For so much of his school life my cancer has been in the background and yet he has just got on with it. He has never used it as an excuse and has just continued to work hard and behave well – what more could I want. His end of term report was amazing and to top it all off he was one of two to receive a little trophy for their Outstanding Writing ability.

So despite being a little sleepy from treatment and knowing that I’m due 2 more during the holidays I’m feeling very happy and very lucky and very excited about a lovely long summer with my boys. Unless some sneaky side effects kick in I can relax now until the next scan which is a couple of months away so for now all really rather good.

 

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“A measurable response to treatment”

After all the anxiety and uncertainty of the last couple of months I am very delighted to report that Pembro is working.

My first scan result, since starting this treatment in May, shows that the tumour that was causing all the trouble has reduced from 2.8cm to 1.5cm with some signs of necrosis at the centre. I have never been so happy to be told that I’m a little bit dead inside.

So I get to fully enjoy Oscar’s final few days of primary school (whilst revelling in the miracle that I’m here to see it), we get to book a summer holiday plus I get a lovely long summer hanging out with my boys. I also carry on with 3 weekly treatments and right now life feels very very good and very precious.

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.

 

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.

 

 

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).

 

Somewhat stagnant limbo

Feel as though I ought to have a little more to say for myself at the moment having been so blog-gy over the last month or so. However, it feels as though life is slightly on hold – which is pretty ironic under the circumstances.

As I mentioned in my last post I had my first dose of Pembro and the hospital experience couldn’t have gone more smoothly. Unfortunately I then felt pretty rough for 24 hours afterwards as was very tired and also managed to produce pain in pretty much every joint in my body, even my face hurt. Thankfully it wasn’t too bad and also didn’t last terribly long but it did take me a little by surprise. My ‘team’ at the hospital don’t seem to think it can have been a reaction to the Pembro itself as it came on so quickly and they’ve suggested it was either a response to the infusion or a random viral thing. I’m not convinced but either way, happy to be feeling much better again and will be better prepared next time!

So other than that, I really don’t have a lot to say for myself. I think until I have a few more infusions and my scan in mid July it’s hard to say how I feel and it’s very hard to make any plans. I’d very much like to book a summer holiday for the four of us but that’ll have to wait until I know whether the treatment is working so instead I’m spoiling myself with treats like lunches with friends, massages and lots of reading in my lovely new garden. Also the little rush of treats and the fact that Andy and my delightful friends have kept my house full of flowers has given me plenty to smile about.  I have no choice but to live in the now and there are very many advantages to it but it doesn’t stop me really wanting to book a summer holiday and make some plans…..

 

I’d very much like to add some more intrepid guinea pig pictures but think the title of this blog is pretty telling… not feeling especially pioneering, not allowed to be adventurous, instead just treading water but hoping that no one empties the pool in any great hurry. (So happy with my idiom/metaphor – although didn’t know that’s what it was – feel much chirpier now).

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Treatment begins

I have to admit to fact that I’ve been feeling pretty sorry for myself. I feel sad that I was diagnosed with cancer at 34, sadder still that I was told it was terminal at 36 and pretty gloomy that the treatment that I’d hoped might be a miracle just isn’t – at least not for me.

I’ve been trying very hard to count my blessings and having my boys, my family and my lovely friends makes that pretty easy but I remain phenomenally disappointed that I’ve got to start treatment again.

Unlike the initial drug trial, and the subsequent drug rechallenge, I’m not totally confident that Pembro is the right choice. There are such constraints as to what I can do next so it’s not like I have menu of treatments and I get to choose but there were other routes. I’m very aware that there’s currently a lot of research into the best sequencing of melanoma drugs as well as developing better systems to test which drugs will work for which patients but it’s not ready yet and so the decisions I’m making are basically guesswork which bearing in mind their importance is pretty daunting.

Despite my gloominess, having just has my first Pembro infusion, I thankfully do feel better. Physically you wouldn’t know there was anything wrong with me as the cancer is currently symptom-less so no change there but mentally I feel better now that I’m actually doing something.

The nurses couldn’t have been kinder at the hospital today. The cannula went in first time – always a bonus and the infusion itself was ridiculously speedy. It’s only 30 minutes and the saline flush at the end only adds a further 7 minutes. The longest bit of the day was the period from the 9am blood tests to the 1pm arrival of Pembro on the ward.

As I’ve mentioned in previous posts, Claire and I developed a set of very strict rules which stated that until I was safely cannulated and plumbed into the treatment we couldn’t reward ourselves with cups of tea and chocolate. It dates back to 2011/12 when I did the Avastin trial and it’s hard not to get a little obsessive and superstitious about always doing things the same way. This all worked pretty well with the previous drugs as I tended to be hooked up for anywhere between 1 and 3 hours – today however – the 37 minutes left us in disarray. In that time we had to wolf down our sandwiches and tea and chocolate and were both left feeling pretty sick. So my biggest problem today is trying to figure out a whether we can break the ‘rules’ and rejig all the timings!

On our way out of the hospital we bumped into my old trial nurse and she has managed to reassure me that firstly my choice of treatment is right and secondly that whilst there’s no miracle cure for me perhaps my immune system just needs to be kicked into action every so often! So feeling cheerier than I was this morning when I wrote the first half of this post on my way to the hospital, a little sick from the excess of food and pretty knackered but basically all good.