Full Steam Ahead

So, whether I like it or not 2019 is underway and with it comes a new treatment plan from the Marsden. I had my appointment this morning and now have my first month’s supply of Encorafenib and Binimetinib (Enco+Bini). My new drugs caused a rush of excitement with the hospital pharmacy as apparently I’m their first patient to receive them – until now they’ve only been used as part of a trial and so the whole protocol proved new and exciting. Even my doctor described me a ‘trail blazer’. I did point out that I’d really like to be at the other end of things one day and for there to be mountains of data and reassuring information but to be fair I do know that with the equivalent drugs (made by other drug companies) the data does exist it’s just that I opted for the newest ones! Anyway, it was fun seeing the slight buzz of excitement amongst the really lovely pharmacists!

As always I had to fill in a consent form essentially saying I’m happy with every side effect under the sun as the drugs themselves will prolong my life. The side effects in some ways are more similar to those from chemo than the ones I’ve been exposed to with immunotherapy in that you won’t end up with the same kinds of potential autoimmune disorders – diabetes, hepatitis, colitis, pneumonitis and endocrine problems but there’s potential for more fatigue, nausea, rashes, aches and pains as well as more serious issues which thankfully are rare including heart and eye issues. As I’ve done in the past I’m going to assume it’ll be fine until proven otherwise. However, Prof Larkin did point out that I’m not simply taking two drugs but will still be very full of Pembrolizumab, so essentially I’m being exposed to 3 drugs and there are high levels of associated toxicity. On the plus side there’s also a slim possibility that it’ll make everything work better as I’m getting all the drugs! So I ought to be very vigilant over the next couple of weeks and in fact will be back at the Marsden in 2 week to get my bloods checked as a precaution. After that it’ll be 4 weekly visits to get my bloods done, see the doctor and pick up my pills plus a scan in 8 weeks to see whether it’s all working!

This move from immunotherapy to targeted treatment, from infusions to pills, from a treatment that might conceivably be a cure to one that always stops working at some point has been a lot to get my head around over the last few weeks. Thankfully, as I often say, time is a magical thing. Once the shock of the last scan had settled I’ve had time to get my head around all the changes and to think through the specifics of what it is that’s worrying me and to some extent deal with those concerns. Fortuitously (as this was arranged a couple of months ago prior to the shit scan)  I’m off to Barnet tomorrow for one of my magical days where I see my counsellor, have a reflexology session (from a reflexologist not my counsellor) and then buy the world’s best doughnut so I’m sure the counselling will help me sort through some more of the current head-fuck.

I realised that one of my concerns was related specifically to the move from infusions via cannula to daily pills. Despite my rubbish veins, I don’t really mind being cannulated. In the end I get to just be a patient and it’s the nurse who’s responsible for getting the damn thing and they literally hold your hand throughout the process. Plus, it’s only 3 weekly and whilst I never forget about melanoma I don’t have to physically deal with it every day. The pill thing is different. It’s my responsibility to take them every day and it’s highly unlikely that anyone will hold my hand whilst I do. Although perhaps I ought to train the boys to do exactly that! Equally, no one will accompany me every time, provide me with lunch and then eat chocolate once it’s all underway. The element of ritual will be gone and it’ll just be me and the pills. Plus, it’s lots of pills – my doctor described it as 3 a day – what he hadn’t factored in is that you actually have to take several to make up the dose so in fact it’ll be 12 a day – 9 in the morning and another 3 in the evening. It’ll be fine. My veins will be happy to left alone and the slight nerve damage I sustained a few months ago from a cannulation fail will have time to mend but it is a big change and i’m not a big fan of change!

So this is the new normal – pills daily, new side effects to watch out for, 4 weekly hospital visits and I’m plunged even further back into the realms of uncertainty which to be fair I never really felt like I left. Last year it was liberating to take back some control having got to grips with immunotherapy and book our summer holiday months in advance and to generally not totally freak out at adding things to my diary more than a week ahead of an event and I’m sad to see that go.

Hopefully, if the drugs work and if they don’t make me too ill – we’ll regain some confidence about looking forward but for now life is very much for living in the present – which is much better than not living at all!

So, new year, new drugs and it’s full steam ahead. I shall be keeping my fingers very firmly crossed that I get lucky again and that my accidental trail-blazing ways will keep me here for a lot longer. 

 

Advertisements

Christmas, bugs & new drugs…

I started writing a new blog post a few days after my previous one but didn’t quite get round to publishing it and having had a quick read through – I’ve got to laugh at how irrelevant it suddenly is. The one thing I hadn’t predicted was that I’d get struck down by a delightful christmas fluey/coldy bug. In some ridiculous way, barring the shitty cancer, I’m stupidly complacent about my  health. I sort of assume that even if I do catch something I can be rid of it fairly speedily – well the Christmas Bastard Bug had other ideas – perhaps like the bastard cancer – it felt left out and over a week in I’m still utterly wiped out by it. It’s been a rather unpleasant reminder of how little it takes to leave me feeling pretty broken. However, I’m stubbornly determined that it’s finally on it’s way out and hopefully some more rest and then a return to my lovely kettlebell classes in early January and I’ll once again be fighting fit!

So my not-to-be-published blog dwelt a little on the need to preserve this christmas and not let it get swept up in the shit that is cancer and I was damned if I was going to let the crap scan news of the 17th December mess with my precious Christmas. I haven’t quite had the Christmas I’d imagined and my family are probably far from impressed by how utterly broken I’ve been but I have to say – it’s not the damn cancer that caused the problems.  So, to some extent – Christmas was kept safe from cancer.  It’s astonishing how hardened to crap news we’ve all become. It’s not that I’m not worried by the latest scan results – I’d be an idiot not to understand the potential implications of the fact that the wonder drugs, the potential miracle, the closest thing to a cure melanoma has ever seen has stopped working for me – but I seem to have got better at compartmentalising the fear. So part of my coping mechanism is to decide that for Family Davis, 2019 will not be starting until the 7th January. That’s the day Andy and Oscar both return to work and school and that means I’m hoping to delay the worst of the fear, panic, sadness until just before I’m back at The Marsden to get my first prescription for the new treatment.

So, in the meantime, the bastard cancer gets to do it’s thing for the new few weeks. It’s quite an unsettling feeling knowing that the binds of immunotherapy that have been holding it in check have loosened and I’m having to place all my faith in my doctor that it won’t go wild between now and January 9th! To be fair, I do trust that the nearly 5 years of immunotherapy drugs that I’ve thrown at it are probably still doing something and so a couple of weeks ought to be ok. Plus, hopefully it’ll minimise the side effects to have a small treatment break before throwing more drugs at the problem and as it turns out – with the foul Christmas bug I wouldn’t have been well enough to get started on the drugs anyway!

My new drugs of choice are known as targeted therapy and the particular combination I’m going for is Encorafenib and Binimetinib. There are other combinations but essentially they’re all very similar – they’re just all made by different drug companies and if one doesn’t work the others won’t either. My decision to go for this particular combination is that the side effects are marginally better plus it’s the newest combination and I like new! During the slightly panicked hours of not sleeping in the days immediately after the scan results I found myself trying to get my head around how to say these two overly-complicated words and have almost been chanting them like some kind of mantra – pretty sure that’s not going to be enough – might need to actually take the things to feel the benefit.

This new drug combination has just got to work. Right now it’s the only option that I have. As I said in my previous blog if it does work it may well open the way for further options and perhaps more immunotherapy in the future but even my doctor has highlighted that there are no guarantees that that would even work – it’s speculative. However he does have a lot of faith in this plan and the likelihood that I will have a good response. He feels that with my history of doing well on the immunotherapy drugs there may be further scope if the Encorafenib and Binimetinib (Enco/Bini) can essentially confuse my melanoma and make it forget that it’s worked out how to get round the previous immuno drugs. This is obviously not in the least scientific but it’s as much as I understand at the moment and it’s this possibility that I’m having to hold on to as the alternative is not pretty. The alternative is that I’m one of the unlucky percentage who don’t get a response from targeted therapy and if that’s the case 2019 is going to be seriously bad as there’s nothing else out there to throw at my melanoma and I remember all to well from 2013 that it doesn’t take long for the bastard tumours to really grow and when they do it’s horrid and frightening. But, as I said – there’s no real point in going there in my head as I can actually only deal with what’s in front of me and at the moment there’s a high chance targeted therapy will work and so that’s where my head is at…..most of the time……just not in the middle of the night!

I know I have said this in other blogs but I have been totally astonished and overwhelmed by how kind everyone has been. There are been so many thoughtful messages and just so much support for me and I hope for all those at the centre of of this shit – Andy, Claire and my Mum and Dad too – and it really helps. I’m always amazed by the kindness not least because I’m surprised that people aren’t fed up with keeping up with the countless ups and downs since my stage IV diagnosis in 2013. I’m astonished anyone has the energy to keep up and to keep up the generosity with words and deeds. I’m beyond grateful that they do as it really helps. It makes it all a less terrifying to know that I have so much support and when I’m not floored by the Bastard Christmas Bug it makes me feel strong and very much able to cope with whatever comes next.

So for the next week or so I shall continue to dwell in my 2018 bubble and ignore the fact that a new scary year may be starting and shall stick to my stubborn determination that the new year doesn’t start until 7th January.

A Cancery Christmas gremlin!

Well it seems as though my cancer didn’t realise that Christmas was just around the corner or perhaps it did and was therefore keen to be part of the festivities. Sadly, my much-too-close to Christmas scan results today have shown that one of the tumours that lurks somewhere in the lymph nodes near my liver is growing again. So, somewhat alarmingly, for the first time since my stage IV diagnosis back in September 2013 my cancer has progressed whilst I’m on active treatment. In the past the two lots of progression I’ve had have both been when I’ve been taking a treatment break.

As you can imagine this all feels pretty daunting as I’d got used to the routine and was beginning to really look forward to the idea that I would be able to stop Pembro next May when I’d got to the 2 year mark and would then just go back on it when I needed it. I was beginning to foresee a life in which I just popped on and off immunotherapy at intermittent times and that would keep the cancer under control. However it seems that my melanoma didn’t have the same idea as me and despite me throwing the very best at it it’s found a way of bypassing the miracle drugs and I need to throw something else at it instead.

Now it’s time to move on from the gloom and doom. I am phenomenally lucky to be at one of the best, if not the best, cancer hospital in the UK and I probably have the very best Melanoma oncologist there is and he thankfully has a plan and remarkable amount of positivity for me. There is one more drug option that until now I’ve liked having as an emergency back up plan as after that – there’s currently nothing else. It’s another drug combo but it will be pills rather than infusions so my poor knackered veins will enjoy a break. It comes with it’s own list of side effects but in the last 5 years the drugs and dosages have been refined and it’s less tricky than it used to be. My doctor has also reassured me that it works very well after immunotherapy and that there’s a small chance that I might respond well to further immunotherapy somewhere down the line. As always – no one knows. It’s all new and my case is special as I’ve probably had more immunotherapy over the last 5 years than anyone else in the UK! So once again I am the data and there’s not nice reassuring stats to offer any real reassurance.

So, for now, onwards and upwards. I will once again be a bit of a guinea pig as who knows how I’ll respond and for how long. I’m not going to start anything until January as the new drugs can make you quite ill whilst they sort out the dosing and I could do without that over Christmas. Plus, I’m so full of Pembro that it seems sensible to give my body a bit of break before adding more drugs to the cocktail! It certainly wasn’t the news any of us wanted but it makes me realise quite how much the treatment landscape has changed since my diagnosis – this was always my last resort and in the past it might give you 6 to 9 months – now it’s given in combination with another drug it can keep working for years. And those years are the ones in which they can keep working on treatments and so hopefully there’ll be something else in the future to move onto next.

Feeling pretty battered by the whole thing but remarkably determined that this will not bugger up Christmas and that the new drugs will just have to work and work well for me.

A teenage milestone!

On this day 5 years ago I summoned every ounce of my very depleted energy and managed, with Claire, to take my lovely 8 year old Oscar and a group of his friends to a nearby soft play/climbing hell-hole – (obviously the place of dreams for a group of 8 year olds) to celebrate his birthday. These places tend to make you feel like death at the best of times and this was definitely not the best times. It was just over a month after finding out that my cancer was ‘terminal’ and the minor aches and other issues were ramping up and leaving me feeling pretty grotty and extremely full of a cocktail of pain killers.

Nonetheless, with Claire’s help, I just about survived the morning, and with the various children suitably tired out by crazy climbing, running, screaming activities I laid out their lunch stuff at home and then had to leave the rest of the afternoon in the hands of Claire and a couple of other very lovely and kind friends as I went off to the hospital. The 30^th October 2013 was the date of the first stage of my first treatments on the blinded drug trial known as Checkmate 067. I didn’t have to do a lot – just had to get my bloods done and see my doctor and be signed off as ‘well enough’ to have my first drug infusion the next day. I remember very little about it beyond finding myself sitting in the waiting room crying because I’d had to leave Oscar on what I thought was almost certainly the last birthday of his I would ever see.

I had no idea that I’d get the ‘best’ arm of the drug trial. I had no idea that I’d get lucky and not get very badly hit by the side effects, I really had no idea how brutal the side effects could be and how most people struggled with them and I certainly didn’t realise that this treatment would be like an absolute miracle for me. The one thing I absolutely didn’t know and really wouldn’t have believed is that 5 years later I get to see that same beautiful boy turn 13 – my own little teenager. I’ve often posted about milestones and there really have been so many of them and really every birthday, every anniversary, every new school year and every one that finishes I cannot help but pause and marvel that I am here to see it and so they always feel particularly special. I didn’t think I was terribly complacent before my cancer diagnosis but there are certainly things that I just assumed. I don’t think when you have children you imagine that you might not see them grow up and yet that is something that I have to face and deal with every day and the milestones bring it home. Thankfully they bring utter joy. I genuinely couldn’t feel happier to see my boy turn 13 and I couldn’t be more proud of what a delightful young man he’s becoming.

The other side of September 24th

I had no intention of posting another post so soon but one of the things that I have somewhat self-indulgently enjoyed about writing my blog is that for me it works a little like a diary – not that I was ever very good at keeping one – and I’ve found it quite useful to look back and see the highs and lows of the last few years. So, the purpose of this blog is a reminder to myself that as much as I struggle with September and as awful as the memories are – it all feels very different once the dreaded 24th is behind me. Obviously this year it was even more marked as the 24th had the added fun of scan results and so the anxiety and dread was worse than usual but equally the relief is even greater. The simple pleasure of seeing the date on my phone yesterday showing 25th September put a smile on my face that has remained ever since.

On being told that my scans were fine on Monday there is always an initial feeling of relief but it is tempered by both an inability to process it after all the weeks of worry as well as a feeling of frustration and anger that my life literally now rests on scan results. I spent most of the September feeling incredibly sad that my life changed so dramatically 5 years ago and I think I basically spend weeks grieving for the life I didn’t end up getting and I guess that remains even after the results. However by the next day that feeling slipped away and I just feel very relieved and lucky and very delighted to be entering another year after a death sentence of a diagnosis.

So I’m sitting here tonight on the eve of what feels like another impossible and miraculous birthday feeling very blessed. Despite being given months to live days before turning 37 not only did I make it all the way to 40 but I’ve kept on going and will be 42 tomorrow and as I often say – growing old is an utter privilege.

I have had an utterly delightful lunch out with my oldest friend Clea followed by a really lovely afternoon with my boys who appeared to be both laughing and crying at their attempts to secretly wrap presents. I feel as though the weight of the world that has sat like a dark cloud above my head, or on my shoulders, or wherever these things sit has finally lifted. I know that in just under 12 weeks from now the worry will build up again as another scan approaches but right now I can utterly deal with that because 5 years at stage IV and turning 42 when you were told you had months to live at 36 is extraordinary and I truly am one of the lucky ones. Plus I’m quite excited to see how my very silly boys have wrapped my presents – apparently they even used ribbons – and better still Andy will finally be back from what has felt like a very long work trip sometime around midnight tomorrow and so it’s hard not to feel rather joyful. 

5 years – 24th September 2018

I honestly cannot believe that I am getting to write this post – 5 years was not even something I dared dream about on this day in 2013. Stage IV melanoma patients were lucky to get months and the really lucky ones might survive for a year or two.

Considering how long it’s been I still remember so much about that day.

I remember my oyster card refusing to work meaning I needed to buy a ticket which I feared was a bad omen.

I remember sitting in the waiting room with Claire and Andy and that as hard as we tried we kept running out of anything that resembled conversation.

I remember that the last tiny thread of hope disappearing the moment I saw my oncologist’s face.

I remember being surprised at my ability to ask questions about possible treatments and what to expect.

I remember my doctor being unnecessarily defensive when Andy pointed out that my year’s treatment on the Avastin trial hadn’t worked.

I remember, at Claire’s insistence, being shown a scan of my poor tumour-ridden liver (I was too shell-shocked to actually comprehend what I was seeing).

I remember being sent through to another room with the ‘bad-news’ nurse. I remember Claire and I both almost laughing at the horror of it as we’d seen and commented on so many other patients being sent to see the ‘bad news’ nurse.

I remember the three of us politely listening to the suggestions about palliative care and what support there would be for the boys whilst really just wanting to get out of the hospital. I’m pretty sure we said yes to cups of tea as it felt like the right thing to do.

I remember standing outside the hospital on a suitably dreary grey day and calling my parents to tell them that it was as bad as we’d feared.

I remember composing a text to send to my nearest and dearest to let them know that the news wasn’t good.

I’m sure there are some bits that I’ve forgotten but so much of it is still crystal clear in my mind and it takes very little, particularly during September, to get flashes of that awful feeling that your absolute fear, your nightmare is actually your reality.

I have often written in this blog about what came next, the combination of knowledge, amazing support and a massive dose of good fortune that mean that I’m still here today so I won’t go through that again beyond saying I know how lucky I am. There are now a substantial number of stage IV melanoma patients who were diagnosed in 2013 or after who, due to the amazing developments in immunotherapy, like me, are defying the odds and continuing to live with cancer. There are, as I’m always pointing out so many other patients who started this ‘journey’ with me but who have died so as I’ve said I am very much one of the lucky ones. However September and particularly September 24^th is a difficult time for me as the memories alongside the terrible fears about how much longer I’ll continue to ‘be lucky’ flood in.

This September 24th not only marks 5 years but just in case this date wasn’t already stressful enough by some weird coincidence or possibly those damn goblins of mischief having fun, I also received my latest body CT and brain MRI results today.

I was given the option of changing the results appointment when I realised how the dates fell but in the end felt that September 24th will always be an awful day so if the news were to be bad it would just add to the shitness but if the news was good then it might go some way to saving this poor day. In the run up to today it’s been impossible not to get lost in the memories of 5 years ago and to imagine meeting with my doctor today and knowing within a second of walking into the room that once again I’d been pushed back on to that damn rollercoaster.

Thankfully and joyfully my results today are once again stable and my brain is brilliantly unremarkable. When the news properly sinks in I shall be breathing a massive sigh of relief.

Summer and September

This summer has been utterly lovely. I always love the boys being off school and this summer we have taken full advantage and have had a family trip to Hastings, a trip with just me and the boys to the beautiful Auchmithie in Scotland and an amazing holiday by the sea in Andalucia including a couple of days in Seville. It is impossible not to feel very very lucky to have had so many adventures and better still to be alive and well and enjoying them.

The downside, as always, is that blooming September then arrives and the boys abandon me to return to school and Andy swans off to work and I feel utterly bereft. For the first few Septembers after my stage IV diagnosis I gave my self a hard time about how much I struggle emotionally at this time of year but I have finally learnt to accept it and just try to make sure that whilst it’s ok to acknowledge that I’m pretty battered by the scars of Septembers past – I’m not simply wallowing.

This year in my attempts to alleviate the fairly constant feeling of panic I seem to have turned into some kind of wild sorting and tidying monster. On the afternoon we got home from Spain as well as all the unpacking and countless loads of washing and drying I also sorted and filed the last few months’ worth of post, sent emails that I’d been meaning to send for ages – including such things as putting in requests for train delays earlier in the summer. Since then I’ve cancelled credit cards, requested refunds for faulty products, dismantled my bedroom in order to properly hoover under the bed, sorted out the horror of the cupboard under the stairs, sanded and oiled the kitchen counters as well as our coffee table plus a certain amount of cooking and baking in a slightly manic way. In that we only got home on Sunday afternoon and I spent Monday at the hospital having Pembro no. 23 – it’s probably been a little excessive. On the upside every mucky corner of the house ought to be perfect by the time the dastardly September 24th is over.

I can’t figure out whether I’m just trying to stay busy as a distraction or whether it’s the slightly odder getting everything in order just in case I don’t make it through the month – regardless, the house is enjoying all the attention and hey, September is slowly slipping past.

Hastings

Hastings

Scotland

Scotland

Spain

Spain