Another Brussels Adventure

Last night I returned home from my 4th MPNE conference in Brussels and as always after these events I’m utterly exhausted, totally inspired and already missing all my melanoma friends. It seems extraordinary that a group of people who are brought together by something as vile as cancer can form such strong and joyful friendships.

This year’s conference was held in the same hotel as the first one that I went to back in 2015 and it was odd to think back over the previous years and realise how much has changed, how much I’ve been taught and what a rollercoaster of a journey the last few years have been.

Back in 2015 when I was on my first lot of immunotherapy – (Ipilumumab and Nivolumab on the blinded trial) I applied to go to the conference realising that as a stage IV cancer patient I needed to learn as much as I possibly could about the disease. What I didn’t expect was that I’d develop side effects from the drugs and ended up hospitalised in the days running up to the conference. I was so set on going that I was eventually able to persuade my consultant to discharge me with the promise that I was going to be surrounded by medics should anything go wrong. I arrived home from the Marsden on the Thursday evening and set off early the next morning to Brussels with a suitcase full of antibiotics, steroids and as it turned out no socks.

The conference was brilliant and my recent bout of side effects stood me in good stead for workshops about the risks that patients are willing to take. We are far less risk-averse than our doctors and carers and having just experienced grade 3 side effects first hand I was very clear where my priorities stood. I knew very few people who were attending the conference but those that I did know were lovely and welcoming plus I finally got to meet the phenomenal team behind MPNE. I also got to spend time with my much missed friend Lori. She was dreadfully ill that weekend and despite our plan to travel home together I had to leave her in Brussels as she was hospitalised with pneumonitis. Considering how ill she was – she still gave an extraordinarily powerful talk about her fight to access treatment and quite how much risk she was willing to take.

The first conference was a total eye-opener and like so many first time attendees I felt like a total fraud I was very much a patient and not a patient advocate and felt that whilst I learned a lot I gave nothing back and whilst I did join in with some discussions I was extremely shy. The following year, to my surprise, the indefatigable Bettina asked whether I’d be willing to give a talk about what the 2016 MPNE theme – knowledge is power – meant to me as a patient. To my even greater surprise I agreed to do it. How could I not – all those involved in MPNE work tirelessly to engage, inspire and ultimately empower everyone who attends so really when they ask you to do anything it is impossible to say no. Plus, the lovely Lori had died in November 2015 and remembering her passion and bravery (hate that word in relation to cancer but blimey she was brave) there was no way I wasn’t going to give it a go. In the months before she died, despite how ill she was, she’d been encouraging me to get more involved in MPNE and been gently pushing me to find my voice.

So in March 2016, I’d had got over my upset that I was off the trial, I’d had a lovely 9 month break from treatment and was several doses into my Ipi/Nivolumab re-challenge. I was beginning to realise that whilst I might not be the most proactive patient advocate my treatment story was important. There are still very few melanoma patients who’ve done this drug re-challenge and I was happy to tell my story as well as glean any information from those attending and talking as to what the likelihood of it working was! At the first conference I had been pretty knackered from the recent side effects and hospital admission at this second conference I was 3 doses into my 4 lots of ipi/nivo and was suffering from a fine combination of fatigue, facial flushing and an extremely dry mouth. None of these things make giving a talk very easy but I did it and once I’d stopped shaking with nerves I was very proud of myself for stepping so far out of my comfort zone and not totally screwing it up.

Forward another year and it was MPNE2017 and this time I was not on any treatment (having completed my re-challenge in April 2016) and was remarkably full of energy and was able to rush around doing a little Brussels sight-seeing in the tiny windows of downtime in the conference programme. Again, I’d been asked to speak and this time it was talk about how much an additional 3 months was worth. The talk was inspired by a workshop that I’d been to in London when I’d been appalled that an additional 3 months of life was considered of so little value and it really reinforced for me how essential the patient voice must be in any discussions about treatment and the value of life. It seems that even without me realising the whole patient advocacy thing was seeping into my life and making me bolder and braver about stating my views. This conference was brilliant – highly informative and beautifully put together and it was so lovely to catch up with a group of people who over the years had become my friends. I’ve talked before in other posts about how nice it is to spend time with other people who are also living with melanoma and I realise that part of the pleasure is that you don’t actually need to talk about your cancer story beyond a brief recap because these people live it too and understand all the ins and outs without any explanation.

So finally to this year’s conference and again it was a brilliant programme. For the second year running I was asked to provide bags of florenteenies for the MPNE faculty and so once again travelled to Brussels with a large suitcase of confectionary and a small rucksack of clothes! There were more small workshops than previous years and this meant it was far easier to join in with discussions and share my views. Plus, finding myself at my fourth conference, surrounded by so many lovely friends that it was impossible to talk to them all, I realised there really was nothing to be scared about. I gave a short talk about my experience of disease progression at stage IV and I helped run a workshop about patient forums both of which went smoothly and I don’t think I disgraced myself! Unlike last year when I was treatment–free and full of energy this year I’m 10 months into Pembrolizumab and finding the fatigue pretty hard work so there was no speedy sight-seeing and instead I perfected the art of the 10 minute power nap in order to make it through the long but fascinating days.

Despite only getting home last night today was a treatment day and I had to set off early to go for my 15th infusion of Pembro. I started the day feeling pretty tired and tearful and really missing my lovely melanoma friends but thankfully the day went smoothly, my MPNE friends sent my lovely messages and I even managed to squeeze in another one of those magical power naps when I was waiting for treatment so the day ended more cheerfully than it began.

Looking back over the last 4 years of conferences it’s amazing to see how much has happened, not just in terms of the vast amount of immunotherapy I’ve had but in terms of the friendships I’ve made, how much I’ve learnt along the way and how much I feel like I very much belong to the really quite delightful MPNE family who I believe like me for more than must my florenteenies!



Another Brussels Adventure

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.


How am I……

Why I’m adding to the litany of cancer blogs

When I first started writing this blog I explained that I had huge reservations about doing so as wasn’t really sure what the purpose of it was. It seemed to me that there were so many cancer blogs lurking online and I didn’t have anything original or interesting to say. Of the few blogs that I follow the ones that I really engage with are generally beautifully written, or have a particularly brilliant and insightful way of viewing a situation or I know the blogger. In the third instance – knowing the blogger – they happen to be beautifully written and insightful too! So, with that in mind, I don’t really feel like I add anything to the genre. However, I find writing about my situation incredibly cathartic and so the reason I’ve continued to write is an entirely selfish one. I find it useful to give myself time to just sit and write about what I’m feeling and as an added bonus it’s a way for me to look back at my ‘melanoma adventure’. For the record – the name of the blog was a joke but it’s kind of stuck as I haven’t worked out how to change it or what to change it to!

For the first year of writing the blog I only told one person that I was doing it and where to find it and it’s taken me a really long time to point more people towards it and I’m still a little reticent. I have huge doubts about my writing ability and as I’ve said before I really don’t have anything new to say. However, people have been very generous and kind about my blog – possibly because it’s hard being mean to people with cancer but hopefully it’s because once in a while I actually have something interesting to say. I very much like the fact that no one actually has to read it. Unlike getting stuck in a conversation about my melanoma with me and finding it awkward to escape people can chose whether or not they actually want to read the damn thing! The main bit of feedback that I’ve had is that it’s useful to get an insight into what’s actually going on in my head and so, with that in mind, here’s the muddled, spaghetti-like mess I’m living with at the moment.

In my last post I wrote about my impending scan. It’s still impending…and the results are still a fortnight away so no news there. I attempted to explain why this next scan is feeling particularly daunting – it’ll be the longest I’ve gone without treatment since the stage IV diagnosis – and I hoped that by writing it down I could put the nerves aside and just get through the next couple of weeks. Unfortunately, things haven’t worked out like that – the nerves aren’t subsiding and instead I feel like I’ve hit a bit of a wall. Physically there are no obvious problems, no sinister signs that the cancer has progressed but then it often arrives unannounced so that in itself is not a huge comfort but mentally I feel wrung out. The pattern of my life, of my immediate family’s lives, for last 3 and half years has been dictated by melanoma, by appointments, treatments and scans. Initially I lived my life in 6 week blocks and now, in theory that’s moved to 12 week blocks of time. As I’ve said before, I’ve learned to take advantage of this somewhat disjointed way of living – there are more treats and far more ‘life’s too short not to…’ moments and that’s worked incredibly well and I’m sure it’ll continue to do so but right now it feels exhausting.

It feels hard to explain what it’s like to live what is essentially a very surreal life. There are many wonderful things about it but at the very heart of it is the knowledge that I’m busy harbouring a cancer that without treatment would have killed me three years ago and that whilst all appears to be well at the moment I just don’t know. It doesn’t take a lot for things to change and I’m very frightened about my luck running out. There are still other treatment options for me if and when I need them but the only one that holds a tiny hope of a miracle is the one that I’ve already had. First time round it provided months and months of amazing quality of life but it didn’t last – more treatment was needed and I moved further into the realms of the totally unknown.

For a stage IV melanoma patient I’ve been phenomenally blessed – three and a half years of mostly feeling incredibly fit and well is extraordinary. In comparison to many of the other people on my online support forum I really don’t have anything to complain about but compared to my old pre-cancer life I feel scared and I feel sad. I’d quite like to not feel a little bit embarrassed that I told everyone I had months to live and then kept on going. I’d like people to understand that I don’t have the answers – I have no idea how long my current treatment will keep working, neither do my doctors – no one does. I’d like to not have to have developed ways of staying busy and distracted so my life has more to it than just being a cancer patient. I’d like to not be terrified that every slight headache is the sign of something untoward happening in my brain. I’d like to not have a whole list of people who I light candles for who weren’t as lucky as me. I’d like to not have to be grateful that barring an unforeseen catastrophe I’ll see me eldest into secondary school this September but cannot be certain I’ll do the same for my youngest. I’d like to not have had a big old ‘woe is me’ moment – it’s a bit like outliving your terminal prognosis – it’s embarrassing –  but I guess it’s my blog so perhaps it’s ok to do it here as after all no one has to read it.

Why I’m adding to the litany of cancer blogs

Ah joy, scan time again!

For various reasons I’m always a little uncertain as to whether I ought blog prior to a scan. One of my concerns is a fabulously paranoid one -which is if I somehow set the wrong tone (possibly show signs of complacency) that’ll change the outcome of the scan. Obviously, as I’m sure I’ve said before, I really do know that I cannot change things simply with the power of my mind but cancer seems to breed paranoia and superstition and it’s hard not to get a carried away with irrational thoughts. My other reservation is that what ever the results turn out to be it’ll make whatever I have to say now totally pointless.

Regardless, I still appear to be writing so let’s hope I don’t get the tone wrong! My next scan is due in 10 days and I then get my results a week after that. It is, as they all are, a particularly nerve-wracking one. I’m due for both a body CT and a head MRI and the addition of the MRI makes it that bit more stressful. Melanoma has a propensity to go to the brain and it turns out that that frightens me even more than the fear that it might have broken away from the my liver and porta hepatis and started running wild in my other organs. I know of many people on my online support group who’ve done incredibly well after a diagnosis of brain mets but I think all of us melanoma patients would agree that it complicates things and it’s damn frightening. So the fact that I’m due my routine brain scan makes this scan a little more nerve-wracking than the previous one but it’ll also have been over a year since I last had treatment. Since my stage IV diagnosis I’ve never gone such a long period without treatment.

Back at the end of September 2013, when I was first diagnosed, it was clearly very urgent that I started treatment as soon as possible and it was a question of finding a treatment and in my case passing all the trial protocols so I could get started as soon as possible. The wait – nearly 5 weeks felt impossibly long and it didn’t help that my health deteriorated rapidly during that period. Thankfully the treatment started and then worked in the nick of time and kept things ticking along until Feb/March 2015. (I had 4 doses of ipi/nivo across 3 months and then fortnightly treatments of Nivolumab after that). With the onset of surprisingly late side-effects and a short stay at The Marsden I stopped treatment on 5th March 2015 and managed to last until Jan 2016 treatment-free before a scan revealed that the cancer was once again progressing.

My second go at treatment – my re-challenge – took place from February to April last year and unlike my previous go (which to be fair was part of a blinded trial so no way of knowing what I was or wasn’t having) I opted not to continue with the maintenance treatment until it was deemed necessary. The four doses of ipi/nivo had managed to shrink and stabilise the tumours and so, with the support of my doctor, it was decided that watch and wait made more sense. My sense was that the longer I could delay starting the maintenance dose of Nivolumab the longer I could put-off the likely side-effects that got me taken off treatment first time round. Initially I thought it might give me a month off treatment but in fact the second post-scan results were inconclusive and so that led to another month of watching and waiting. The third scan at the beginning of July thankfully showed everything was working – the tumours were smaller and so I got given the rest of the summer off treatment and got to have my first hospital-free summer in 5 years. I assumed that beginning of September scan would show progression and the need for more treatment but it didn’t – it showed stability, as did the November scan and most recently the February scan and so that brings me to now – over a year with no treatment.

What I’d like to do is see how other people in my situation have done but unfortunately/unhelpfully there aren’t any! The Ipilimumab/Nivolumab combo is now offered as first-line treatment for stage IV melanoma patients but this has only been the case since last June and so due to circumstance I’m at the forefront. Add to that the fact that I then went and did the drugs for a second time I’m even more of a guinea pig. Personally I only know one other patient in a similar situation and so there’s really very little data. Obviously, we’re all different anyway and comparisons have limited value but it would be nice to have a little clue as to how long my current situation might last. At my last hospital appointment I did ask but as expected basically got told that I am the data….. On the one hand it’s good to know that whatever happens with me might eventually help other people but it still doesn’t help me battle the uncertainty that is probably the most defining aspect of my life. For someone who has always liked things just so, who likes lists, plans to know what they’re doing I’m doing pretty well with the uncertainty thing. I have no choice, I’ve had to learn to live with it and find ways of making it work for me but come scan time – it’s really hard. I want answers, I want concrete facts I just want to know……


Ah joy, scan time again!