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).
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.
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.
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.
Clearly going to need a whole portfolio of guinea pig pictures for this blog!