Up and down, up and down – damn that emotional rollercoaster

So, last Wednesday I finally got the call I’d been waiting for to say the insurance company had approved my treatment. There was a brief moment of joy which was accompanied by an embarrassing ‘happy dance’ on the way back from the school run. My boys looked at me as though I were a lunatic but being lovely little boys they quickly joined in.

Frustratingly the relief was very quickly undermined by a chat to the insurance company where I discovered that they’d only approved the initial four doses of the combination treatment plus a CT scan. They didn’t appear to know about the on-going maintenance dose of Nivolumab that follows the four doses of the combo, they put a limit on the amount they’d pay my consultant, there was no mention of who pays if I am admitted to the hospital with side-effects. I called my nurse, I emailed my doctors, I spoke to my doctor’s PA, I spoke to the insurance company again and eventually I was offered enough reassurances to calm down. All was looking pretty good although the hospital did seem slightly baffled by the offer that had been made. Thankfully it looked like the situation was solid enough for me to be able to start treatment on Monday. I spent a very sleepless weekend worrying about potential side effects and in the moments when I slept I dreamt about hospitals but by Monday morning I was ready and pretty keen to get those toxic, miracle drugs back into my veins and doing their magic. I was also keen to just be a patient and not to have to be chasing, nagging, emailing, phoning to make sure everything was as it should be. It’s pretty shit having to live with cancer but all the additional complications that have materialised in the last few weeks just make it that bit worse.

Monday did not go as planned. I successfully got my bloods done, I chatted with several other patients who I know from my online support group who are also Marsden patients and then I went in to see the doctor. This is when it all went a bit wrong. I haven’t actually met up with this particular doctor since I signed up for the trial in September 2013 – and so it was odd to be meeting him again now. It was very obvious straight away that there was a hitch and after some discussion it turned out that he was not happy for me to start the first phase of the trial until the insurance company had approved the full treatment. I met with him half an hour before I was due to start treatment and it simply hadn’t occurred to me that anything was going to get in the way of that so the discussion came as quite a shock. His argument made perfect sense and in that it was going to be him who was going to need to sort things out with the insurance company I had to accept his advice that I ought not to start treatment that day. I was phenomenally disappointed. Not just because I couldn’t get started but because it inevitably meant more waiting and I feel like I’ve spent the whole of January waiting and it’s just very very hard. I also couldn’t face the thought of having of making more calls, sending more emails and generally having to nag everyone to get things moving.

However, I clearly had no choice and just in case I wasn’t already stressed enough he told me that it was protocol for me to have a brain MRI. Again, the reasoning made perfect sense. Melanoma is a sneaky bugger and it likes to travel and one of the places it seems to particularly like is the brain. My doctor explained that it’s simply better to know as it can really help with the management of side effects, steroids etc to be aware of what’s happening in my head. This is all very sensible and logical but the thought of tumours in my brain absolutely terrifies me. Of course it does – it’s terrifying. I’ve had to get over my hatred of having cancer growing around my liver but the brain thing – wow, that a whole other level of scary. Again, however, I obviously couldn’t say no.

So, today two things happened. Firstly, I got a call from my nurse to say that the insurance company had approved both the first four doses of the combo and the on-going Nivolumab treatment. This was brilliant news. I’m also relieved that the doctors have dealt directly with the insurance company and hopefully I can now leave all of that side of things in their capable hands. The second thing was the brain MRI. I won’t be getting the results until Monday and that I really don’t mind. I really, really don’t want to know and I’m scared that this will scupper the new plan for me to start treatment next week. I am, however, pleased to have got the actual scan out of the way. I’ve only ever had one MRI scan (unlike the countless CT scans) and so was pretty nervous. I got called through, had to get changed into a gown, and have a cannula fitted and then found myself sitting in a little waiting room with a selection of really oddly dressed people. There was an older man wearing a t-shirt and boxer shorts, a woman wearing just a gown and her ankle boots and then me with ridiculously long socks, very large jumper and a gown over the top – we must have looked quite spectacular.

There was a fair bit of waiting before I went through to the scanner but when my time finally came I kept reminding myself that I just had to be brave and not panic. I get pretty claustrophobic. As a teenager I refused to go pot-holing on a geography field trip as I couldn’t face the though of having to squeeze through a gap in the rocks that I wouldn’t be able to swiftly return through. So the though of lying in a fairly tight tube with a guard over my face did unnerve me. Thankfully, the radiographer and nurses were extremely kind. They made sure I was comfortable and I found that as long as I closed my eyes throughout the whole thing I could pretend that I wasn’t essentially trapped. I’d been told it would take about half an hour so I counted very slowly throughout. I was trying to count the minutes but thankfully I kept getting distracted and counting very slowly and so the end of the scan came sooner than I’d anticipated. So, in a funny kind of way – today has been a good day. I once again have a plan (I’ll believe it when it happens), I don’t’ have to chase or nag and the MRI scan is done…….. all I can do is hope there’s nothing untoward going on in my brain and I might actually be able to start treatment on Monday. I can simply be a patient again. I found a lucky penny on the way to the hospital today – I hope that helps…..

 

 

Advertisements
Up and down, up and down – damn that emotional rollercoaster

The great unblinding..

Goodness, I really am bad about remembering to keep my poor blog up to date.

So, as seems to be the way at the moment, the unblinding to discover which drug I’d been on took a little longer than I’d hoped. I finally got the call from my nurse a few hours before my consultation. To my utter astonishment, and that of the doctors and nurses, it turned out that I hadn’t, as I’d always assumed, been on Nivolumab (nivo) alone, I had actually been on the combination and so had also had Ipilimumab (ipi) . I was extremely surprised as I haven’t come across anyone else who had that drug combination who didn’t suffer really quite serious side effects after a couple of infusions of the drugs. Other patients had ended up being admitted to hospital with dreadful and serious side-effects and for some very strange reason – I had sailed through for nearly 15 months without anything at all. In fact, within a few weeks of starting the drug trial I’d begun to feel better and that feeling simply increased as the weeks and months progressed.

I was incredibly unnerved to discovered that I had essentially been given the best possible Melanoma treatment currently available. It’s the one that has gained the most headlines in the world of health, cancer treatment and immunotherapy. Whilst I’m hugely grateful for the amazing amount of really quality time it’s provided I have to admit to being disappointed that it couldn’t have lasted longer. No one yet knows how long a positive Nivolumab response might offer a stage 4 patient but there are a few Ipilimumab responders who have survived years (one particular hero has made it to 10 years) post-treatment and so I cannot help but be saddened that I wasn’t one of the miraculously lucky ones. However, there is a possibility that either I didn’t quite have enough of the treatment, as I had to stop because of side-effects, or that the steroids that I had to take to control the side-effects interfered with the success of the drugs and either of these two facts might have caused my current progression.

So, in a perfect world, my preference would be to try having the drugs combination again and if I’m really lucky it’ll be exactly what my immune system needs to start fighting the damn cancer cells. It’s probably not the safest plan of action as the combination is notoriously toxic but I just have to hope that either I’ll get as lucky as I did last time and avoid the worst of the side-effects or that I can get enough doses in to make a difference before the side effects kick in. Unfortunately, it’s not currently available on the NHS so I’m currently going through the agonizing wait to see if it’ll be covered by Andy’s magical work family health insurance. It’d been hoped that this decision would take a day or two but it seems it’ll be more like a week or so… so more waiting…. I also really need to hope that if I do manage to get it – it’ll work. There’s a possibility that the  reason the cancer is growing again is that my body has got wise to the drugs and therefore having more will do nothing but I just have to hope that that’s not the case.

It’s not the only option and it wasn’t even the first plan that my Consultant and his team came up with or the first plan that other oncologists have suggested. I’m inclined to think that it wasn’t the obvious choice because it comes with significant risks. All the work I’ve done with the Melanoma Patients Network Europe has taught me that in general, patients are willing to take far greater risks with their health than their clinicians and carers so I’m not surprised that my preference wasn’t the safest option. In my mind, if I can do this then I’d like to exhaust the potential of these drugs that  have already given me a pretty amazing two plus years and that way I can keep the other options in the magic drugs cupboard of future options.

I’m not totally sure how clear this post has been. I am quite the most un-science-y person I know but whilst I’m still incapable of explaining how the drugs work the medical names and terms have become familiar to me and so they trip off the tongue and no longer bamboozle me. I don’t expect that to be the same for people who haven’t had to live and breath stage 4 melanoma for over two years and so I’m very well aware that it’s confusing and that I’m not very good at explaining. Sorry! I guess the main point is that I know what I had before, I’d like it again and I’m finding all the waiting very tough….

 

 

The great unblinding..

2016

Well it seems like my trepidation about the ending of 2015 and the start of 2016 was well founded. I had a scan on Thursday 7th Jan and to my utter disappointment it showed that the cancer was growing again. I’ve dreaded this scenario for so long that when it actually came it was very sad and made me very trembly but it wasn’t a shock.

It’s been very hard not to feel quite hopeful over the last year as I’ve felt so well and have had 10 months without treatment, which also means there have been very few hospital visits, life has felt very normal. I’d even found myself beginning to look ahead and was starting to make plans for Andy’s 50th in June and even looking ahead to my 40th in September. Whilst it was possibly a little naive to have relaxed so much it’s also been really nice and I don’t think the news on Thursday would have been easier if we’d been fully braced and ready for it. My only hope now is that whatever the new plan will be there’ll be time for some more ‘normal’.

I’m swinging between feeling optimistic that I’ll get lucky again and another treatment or treatments will offer the same quality of life that was achieved throughout much of 2014 and 2015 and fear that my luck has run out.
I can’t help but worry that I’ve already had the best possible treatment and what I’ve got ahead of me is a year or so of lurching from treatment to treatment with nothing quite doing what it needs to do before running out of options. I’m trying to banish the sad thoughts from head about how much of my boys’ lives I won’t see but I’m also trying to be realistic. Although it’s horrid to think about I can see that at 10 and nearly 8 my boys are already sturdier and more ready for life without their mother than they were at 7 and 5. However, whilst I know I won’t see them into adulthood I can’t help but think that seeing Oscar into secondary school and Max into double figures would help. It’s very busy in my head right now!

It doesn’t help that no plan can be made until I’m unblinded from the trial I was on and whatever I was actually on will be revealed. I can make provisional plans in my head based on what I think I was given but it’s pointless as I’ll get the truth on Monday of next week. It certainly reinforces my frustration with the trial design as I really don’t understand why I couldn’t have been unblinded when it was decided in March 2015 that I wasn’t allowed any further treatment. It’s just one bit of uncertainty that I could do without.

As well as that irritation, I’m also aware that I’d be a fool not to seek further opinions from other melanoma specialists as to what treatment I should have next. Different doctors have different areas of expertise even within the realm of melanoma and each hospital is confined by it’s own limitations. On top of this, NHS protocols about the order in which you can access drugs adds another level of complexity to the whole thing. If I choose to have Drug A next then it means I’d then need to fail Drug C before being allowed access to Drug B and this doesn’t take into account what order might actually be best for me! And just in case I wasn’t already in a muddle it does matter what order you have the drugs in but there isn’t much of a consensus as to what’s right. So many variables to contend with….

So, as I said before, my head is very full. I’m blessed to have amazing friends who are helping by looking after me and also pursuing other oncologists and seeking their opinions. As I’ve often said, I’m very lucky. Next week I’ll update when a plan has been formed.

2016