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…..

 

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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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Somewhat stagnant limbo

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.

Treatment begins

Onwards and upwards

So the last few days since my crappy scan I’ve been pretty up and down. Despite expecting the news it still takes a bit of getting used to. It’s a stark reminder of the realities of living with Stage IV melanoma. I’ve been truly grateful that my months have turned into years but I’m greedy enough to want more years and better still some kind of miracle that keeps the bastard at bay for good and so the news that the cancer is once again progressing was very unsettling. I’d very much like my melanoma to stop lurking around my organs and get the message that I’m really not a fan but so far, despite bombarding it with the very best of treatments, my immune system can’t seem to quite grasp a way of keeping it permanently at bay.

So, since last Wednesday, Andy and I have been weighing up the various options and calling in help from my very knowledgeable friends about what I should do next. In a perfect (albeit cancer-y) world I’d be given a menu of treatments and would be able to pick my way through them as and when I need them. Sadly this is so far from the truth – there are trials and treatments and research into sequencing and what might work best for who but it’s simply not ready yet. My choices are actually pretty limited and so this morning’s decision came down to whether to push for the tiny possibility that my health insurance company will pay for another round of ipi/nivo despite the total lack of precedent, or data, or fact that they’ve already paid for it once – or to opt for an anti-pd1 monotheraphy – either Nivolumab or Pembroliziumab.

In the end, with some input from my doctor, I’ve opted to go for Pembro. The advantage of it over Nivo for me is that it still leaves a tiny chance of getting ipi/nivo at some point in the future. Also it’s 3 weekly infusions rather than fortnightly so it’ll require a little less hospital time.

I’m relieved to have a plan. If BUPA approve it in time I’m due to start next Monday and it’ll then be ongoing if it works and if I don’t get severe side effects. In theory,  in that I did suffer from grade 3 side effects when on nivolumab in 2015, there is a risk of recurrence but then all of the drugs come with risks so am not unduly concerned about that.

According to my doctor there’s a good chance it’ll work and the drugs I’ve had previously shouldn’t have a negative impact. Hopefully it’ll buy me more time and time, as well as being very wonderful, also allows for more research and more information and hopefully will make the next decision I have to make slightly less fraught with uncertainty.

Last week my boys asked about my scan results and I was able to tell them that the results weren’t perfect but not a disaster and that the last treatment had kept the cancer at bay and so to stop it progressing again I need more treatment. When I collect them later I can tell them that this is the plan. I’ll start treatment next Monday and will keep on going every 3 weeks and that ought to keep everything in check. This is enough information for them. It’s true – but there are implications that I don’t need to elaborate on to them. The treatment may not work, it may make me ill, it’s likely to make me tired and from my last experience it just just takes the edge off how much I want to do but I’m still very lucky to have options and for now I’m just going to hope for the best!

So for now, onwards and upwards. It’s going to be 3 weekly trips to The Marsden and I’ll have to start building up my supplies of chocolate to accompany my infusions. Treats are an absolute necessity.

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Onwards and upwards

Melanoma – the gift that just keeps on giving!

It goes without saying that I’d much rather be writing a happy cheery good news post about my latest scan but sadly it’s not to be. To my great sadness it seems that my miraculous treatment has once again run out magic and one of the tumours in the lymph nodes has grown.

It’s been over a year since my last treatment so for once I’m not shocked by the bad news but I’m terribly disappointed. It’s hard not to hope that the treatments I’ve already had will be more durable but it clearly isn’t the case for me. I’m just going have to keep throwing more treatments at this bastard of a cancer.

The plans is as yet undecided as it turns out what seems logical to me doesn’t fit neatly into what’s possible. I’d imagined that when I found myself in this situation I’d move onto the much delayed Nivolumab monotherapy and hope that that would keep things at bay for a while. However, it turns out that if I do that – then it’ll preclude the tiniest possibility of getting a further ipi/Nivolumab re-challenge approved in the future.

So, Andy and I have got until Monday to work out what would be best. I’m lucky in that there are still options but there are also huge constraints based on what will and won’t be approved, what my hospital favours, what the best order to do things is and the fact that there’s no precedent for my situation. It’s not a lot of fun being the data when what you want is answers.

 

longhairedguineapig.jpg.838x0_q80Clearly going to need a whole portfolio of guinea pig pictures for this blog!

Melanoma – the gift that just keeps on giving!

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……

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Ah joy, scan time again!

Brussels & the value of 3 extra months….

Last Thursday I had the odd experience of travelling to Brussels with a suitcase crammed full of bags of Salted Caramel Florenteenies and a small rucksack with 4 days worth of clothes! The reason – the MPNE (Melanoma Patient Network Europe) conference. I had been asked to provide treats for all the attendees and thank-you gifts for the helpers and speakers plus to do a short talk putting forward the patient’s view of why 3 additional months of life is worth something.

As always, the conference was beautifully organised – fascinating speakers, great discussions and some really lovely friends. One of the odd silver-linings of melanoma has been the friends I’ve made along the way and the conference is always a good time to catch up with them and to enjoy the easy short-hand of other people who just understand what it’s like to be a melanoma patient.

The value of having patient talks at these conferences is they serve as a real reminder to the other stakeholders and influencers as to what the point of it all is – the patient is central to the ethos of MPNE. If the work being done doesn’t ultimately improve the situation for patients then it’s the wrong work. With this in mind – I put together my talk and ended up writing something that was far more personal and in the end emotional than I’d intended but it turned out that when I began to think about the value of 3 months it was a subject I felt passionate about. Instead of attempting to paraphrase – I’ll do as I did after the Bristol conference and here it is – word for word.

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3 months are not worth it you say?

Back in January I attended a workshop organised by NICE focusing on patient engagement. NICE stands for The National Institute for Health and Care Excellence. It is an independent UK-based organisation which decides which drugs and treatments are made available on the NHS in England and Wales. Until this point I’d always thought of it as a bit of a baddy as so much of the press we see focuses on the drugs that don’t get approved.

I still have my reservations but it was a fascinating day and very useful to learn a little more about the ethos of NICE and how much they try and do the best for patients. During the afternoon they ran a session in which we were presented with a case study and asked, in small groups, to decide whether we would or wouldn’t approve the case study drug.

The drug was for a cancer caused by exposure to asbestos (mesothelioma). It generally presents in people aged about 60 to 80 and because it’s slow growing – it often isn’t diagnosed until it’s fairly advanced. A drug was developed, that in conjunction with chemotherapy, could potentially provide an additional 3 months of life and for some of the fitter patients that could even extend to an extra 5 months. As is so often the case, the drug was expensive and far exceeded the usual NICE allowance – it also came with some side effects. There were other considerations – this is a cancer this ought to be eradicated within about 15 years simply because the generation who were exposed to asbestos are dying out and so if it were approved it would be for a finite period.

So, we, the audience were asked whether we’d approve the drug. To me it was a total no-brainer. The side effects weren’t really that bad – nothing compared to Ipi/Nivolumab and it could offer 3 possibly 5 months of life.

My feelings were that

  • It was an entirely hypothetical situation we didn’t have to balance books and deal with the implications of what approving this drug might mean for other drugs we were just being asked whether 3 months was worth something.
  • The side effects really didn’t sound that bad and in my opinion the ideal would be to present the information to the patient and let them decide whether they were willing to take the risk
  • Finally – I come back to the fact that 3 months is 3 months!

To my surprise the rest of my group didn’t automatically agree. What was utterly black and white to me came in various shades of grey to them. There were several arguments.

  • The cost issue – this was not a cost effective use of health spending.
  • The ethical argument – it is wrong to foist treatments on to patients who are dying and treatment by it’s very nature would negatively effect quality of life – and
  • 3 months really wasn’t very long.

Eventually we as a group did vote in favour of approval but were then told NICE had in fact turned the drug down and it was only approved after a subsequent appeal. The basis of the appeal was related to the role of societal responsibility, as it was a cancer caused by people unknowingly being exposed to a toxic material.

The experience led me to think a lot about what I consider to be the misconceptions about the value of 3 months.

Firstly, 3 months offers hope and anyone with a terminal diagnosis knows how essential hope can be both for patients and for their families. It’s what stops you taking to your bed and giving up and what makes you get up every morning. That extra 3 months could provide just enough time for a new drug or a new trial and those 3 months might then extend to 6 months, a year, who knows. The role of immunotherapy within melanoma treatment has totally altered the treatment landscape and it’s still too early to know it’s full potential.

One of the main arguments raised during the discussion was that it was simply wrong to push additional treatments on to sick and vulnerable patients and that treatment inevitably impacted poorly on quality of life. The potential side effects were seen as a serious issue.

I objected to this on several grounds.

  • Surely this is a decision a patient – when presented with the facts – is capable of making. There seems to exist a belief that if you have only 3 months to live you somehow also lack the mental capability to make rational decisions about your treatment.
  • I think that people ‘on the outside’ assume that dying of cancer, without intervention, is somehow less dreadful than receiving cancer treatment. Whilst some treatments do come with hideous side effects so does cancer. Surely this is a decision a patient should be presented with?

A major part of the argument is obviously financial. What’s the point on spending what is seen as a disproportionate amount on end of life care. A view that’s much easier to maintain when your life is not under threat and when you conjure up images of end of life you imagine people in their 80s or 90s coming to a more natural end. Thankfully there are some provisions put in place to help balance the discrepancies in cost benefit frameworks with regard to end of life care.

In the end the workshop left me feeling frustrated that people who just don’t understand make these decisions. Until you find yourself in a situation when it is very likely you have very little time left – it’s impossible to know how you’ll feel and how valuable time will become.

I read a really extraordinary book recently by Mary Elizabeth Williams called – A Series of Catastrophes and Miracles. It’s a true account of a woman in New York diagnosed with melanoma who embarked, by a stroke of luck, on the phase one ipi/Nivolumab trial in 2011. She was in her mid 40s and has two young girls.

Just prior to starting treatment she says: –

“I want to stay. Don’t make me leave. Not now, not yet. The school year has barely started and I’m scared I won’t see the end of it. Will I see the cherry blossoms in the Botanic Garden in the spring? Will I get to Christmas? Will I make it even to my birthday? Everything I thought about the futility of treatments that might only give people who have a fatal disease just a few more months – everything I believed about the pointlessness of it – right now, I take it back. I may well have only a few months, but I want those months very much. If I could do something to get a few more months on top of that, I’d take them too.”

This resonated very strongly with me and back in September 2013 – when my world was turned upside down by being told that I had months not years I found myself making bargains in my head – looking to milestones that were a month, two months ahead and hoping, that if I wasn’t too greedy – if I didn’t look too far ahead then perhaps I’d be allowed another Christmas with my family. I remember very clearly fearing that I wouldn’t see my boys reach the end of their current school years, that I wouldn’t see my youngest turn 6, or reach my 20 year anniversary with my husband – both milestones due in the Spring of 2014.

Due to a combination of being proactive about my care and getting lucky with treatment, I have seen those dates and many more but for that time, that 3 months from late September 2013 until Christmas 2013 I really did believe that might be all I would get.

It gave me time to sort out finances, make lists, discuss what I wanted for my children, what I did and didn’t want in terms of my funeral. The time was so precious and I was clearly very ill but during that period I spent lots of time with my friends and my family and most especially with my husband and my boys. Looking back at the pictures of that period – I can see lots of really precious and happy moments –

Just days after the diagnosis my sister and I walked the Shine night time marathon. It was an extraordinarily emotional night but it was an absolute highlight in my life.

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She and I also I established our reputation at the hospital for being extremely silly. My first treatment was on 31st October and due to the trial – the nurses had to take comedy amounts of blood. My sister and I became quite convinced it was some kind of Halloween prank.

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In mid-November – my husband and my boys and I were treated to a lovely weekend away in a beautiful hotel in Suffolk. That weekend I hit my lowest point as the car journey left me feeling utterly broken and I was barely able to make it up to my room. However, the combination of a cocktail of painkillers, and what I believe to be the turning point when the treatment was just beginning to work, the next couple of days were extremely special – lovely walks, family meals and precious time with my boys.

And finally, I genuinely thought that Christmas was likely to be my last but it couldn’t have been more perfect or more beautiful.

I have obviously been extremely lucky as my 3 months turned into 6 months, a year, two years and now right now it’s been 3 and half years but I believe passionately that even if 3 months is just 3 months – that is not something that should easily dismissed – that alone is phenomenally valuable, precious and important.

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Brussels & the value of 3 extra months….