My story….

Most of my friends will obviously know all of this but despite the fact that I’ve always been happy for people to know I’ve been oddly embarrassed spreading the word so for those who aren’t familiar with it – here’s the story:

In May 2011, after a certain amount of hassle from my lovely husband Andy, I visited the GP with a dodgy looking mole. On seeing it, the doctor made an urgent referral and less than a fortnight later I showed the mole to the Dermatologist at my local hospital. She said that it may well be melanoma and arranged for it to be removed immediately. I desperately hoped that it would turn out to be a dodgy looking nothing but did still ask the doctor whether, if it did prove to be melanoma, would it kill me? I cannot remember her exact words but she basically told me to go home and give my observant husband a big kiss as he may well have saved my life.

The mole did turn out to be melanoma. It was 1.1 mm and so just put me into the category of people who then get offered a Sentinel Lymph Node biopsy in order to check whether there has been any spread. This test was done at the same time as a Wider Local Excision where they take out a wider margin of the area where the melanoma was in order to stop any possibility of stray cells being left behind.

To my, and I think to the doctors’ surprise, the test came back positive. Micro traces were found in a lymph node in my right armpit. So, the next step was a lymph node clearance of that armpit. I already had a fairly large scar on my back from the Wider Local Excision so wasn’t too worried by further scars but I was actually very shocked by how large the wound from this operation was. I had imagined that they’d make a small incision and scoop out all they lymph nodes they could find. However it seems that to access nodes they have to do quite a lot of digging and it essentially looked as though my armpit had been gutted. The surgeon did an amazing job of putting it all back together again and it has healed up beautifully but it has still left a long 4” scar.

To our joy, at the time, this showed no further spread. Andy and my sister Claire and I celebrated by raising a glass of fizz and hoping that we’d finally seen the back of the frightening cancer. So by September 2011 I had a 1.1mm melanoma, with micro spread to 1 out of the 16 removed lymph nodes. Chemo and radiotherapy don’t do much for melanoma so instead I started a trial of Avastin. There are very few treatments for people with stage 3 Melanoma – generally the only option is to apply for a trial and this has to be done within a specific period of having surgery. I got onto the treatment branch of this trial and every 3 weeks for a year I went to Bart’s for my infusions.

I finished the trial in September 2012. By then it’d been over a year without any sign of a recurrence and so for the first time since diagnosis I began to wonder whether it might be ok.

I re-launched my baking business under my own name with a beautiful new website and threw myself into building it up. I began to be able to make normal plans once the tiredness from the Avastin wore off I actually started going out past 8pm again! As 2013 started I began to feel more positive about the future. I got past the 2 year anniversary of my diagnosis, I worked very hard, the business flourished, I looked after my boys, we booked a family holiday. I even signed up to walk the Shine nighttime marathon to raise money for skin cancer research.

In May I began to feel a slightly odd ache in my back. I put it down to either the excessive baking or the running which I’d started doing a few months before. I mentioned it to my GP and again to my oncologist at one of our 3 monthly checks. The ache was intermittent I basically underplayed and ignored it. At a visit to my GP in July he mentioned that one of my recent routine blood tests was showing as unusually high. I went home and looked up raised LDH levels and immediately contacted my oncologist to ask whether I should be concerned. She assured me that mine had fluctuated and was being monitored but no need to panic. I tried not to.

July bought unexpected sadness when my father-in-law died very suddenly. Andy’s mum had died only 7 months before and it made for a very tough time. Still, after the funeral, we went off and had what was a really lovely holiday in the incredibly beautiful Kefalonia.

However, whilst we were away, I totally lost my appetite. I love food. I have never not wanted to eat and found it very unsettling. On the upside my back was completely fine on holiday which lead me to think the problem must have been muscular as all the swimming and general lying around seemed to have helped.

Once home I still wasn’t hungry and the backache had returned at the airport. I contacted my oncologist and suggested that I might be suffering from anxiety but wanted her advice. My September appointment was brought forward by a week and they put in a referral to the psychologists to help deal with the anxiety but also ordered a back x-Ray to see what was what.

The x-Ray was clear but they ordered a CT for me anyway. It turned out that my routine bloods from the September appointment showed a further elevation of the LDH levels. At this point I tried very hard to explain it away. Potentially a torn muscle could have caused the pain and the raised blood levels but really at this point I knew. My CT was on a Tuesday and the oncologist had said she’d call me with the results on the Friday. On the Friday I got a call saying I should come in for an appointment the following Tuesday. It was becoming very hard not to assume the worst but I really tried.

On Sep 24th Claire and Andy and I were told that the scan showed our worst fears. The backache, the loss of appetite and the raised LDH levels were all caused by tumours on my liver and porta hepatis and on the blood vessels and lymph nodes around my liver. Metastatic spread means that I’m now stage 4 (terminal), the tumours outside my liver mean that it’s inoperable. I asked my Dr what my prognosis was and was told that without treatment, or if I didn’t respond to treatment, it would be months and even if I did respond we weren’t talking years. My greatest fear that I would not get to see my beautiful boys grew up had just become a reality. By her reckoning Christmas was looking pretty bleak and I was very unlikely to even see Oscar, who was then 7, into double figures.

By this stage I didn’t have the greatest confidence in my oncologist as the evidence of a recurrence was blindingly obvious and yet somehow she hadn’t recognised it. Nonetheless I listened to her advice about what the next course of action should be as I was very keen that some kind of treatment needed to start as quickly as possible and I was worried that seeking a second opinion would slow things down.

The first step was to find out whether I possessed the mutated Braf gene. The hope was that I would as it opened up an additional treatment option. The results for this were positive and so finally it felt like something was going my way. Vemurafenib is one of the most effective treatments for melanoma that works only for those people with the mutated Braf gene. It has a pretty high response rate and tends to work very quickly. So if things are looking critical this is a good way to go as it ought to kick in fast and shrink the tumours. The side effects aren’t great – total sun sensitivity, pains in hands and feet, joint pain, hair thinning or loss but a small price to pay if it works. The main downside of this treatment is that it generally only works for 6-9 months.

My doctor recommended that I start a trial in which I would either get the Vemurafenib or I would get Vemurafenib combined with another drug which they think might prolong the success of the Vem. I was all set to sign up for the trial and undergo a barrage of further tests to check for eligibility but meanwhile we also tried to arrange an emergency appointment with The Royal Marsden. I knew they had a brilliant reputation and I wasn’t convinced that the treatment plan on offer was the best option for me.

I knew there was another drug called Ipiluminab which doesn’t work as quickly and has a far lower success rate but when it does work it can work really well. I felt that in that I wasn’t feeling too bad – the back pain was annoying but a couple of painkillers was keeping it at bay – this seemed like something I should try first. Unfortunately at that time, Ipi wasn’t a first-line treatment and so in order to qualify for it you have to have failed another treatment. Generally they put you on a form of chemo and when this is proven not to work (which it mostly is) you can then go onto the Ipi. I could see that this was a risky path for me to take, as whilst the tumours weren’t causing too much pain, the potential for the ones outside my liver to cause more serious problems was quite high. There were numerous tumours on the lymph nodes outside my liver, some of which were quite large and they could potentially create blockages that would prevent my liver working properly.

Thankfully my mum was able to get me an appointment at The Marsden where I got to meet the extraordinary Dr Larkin. For the first time since my diagnosis I was treated like a person who was in a horrible situation and not simply another number with a nasty disease. He went through my case and outlined the options. He backed up my belief that it would be better to save the Vemurafenib for later and that the Ipiluminab would be the better option. The rules still applied at the Marsden and Ipi still couldn’t be put in place as a treatment plan but they were running a drug trial which included Ipi and a new drug, Nivolumab, which he believed was even better. The trial was a 3-armed blind trial – group 1 would get Ipi, group 2 would get Nivolumab and group 3 would get both. Whilst on the trial I wouldn’t know which group I was in and this would only be revealed if I needed to come off the trial for any reason.

The relief I felt after that appointment was immense. For me it was a no-brainer; the trial was ideal, the doctor listened and was kind and for the first time since my diagnosis I felt safe. I agreed there and then to return the next day to fill in the consent forms and start what proved to be a slow process of checking through tests that I was eligible for this trial. On leaving the hospital I immediately rang my nurse from The London/Barts to explain that I wasn’t going to do the Vemurafenib trial and could she cancel the appointment and tests that they arranged for me. To my total horror I received a letter a few days later telling me that because I hadn’t turned up to a clinic appointment I was being discharged to my GP. Had I had any doubts at all about changing hospital this got rid of them!

There was what felt like an agonizingly long wait to get onto the trial at The Marsden. I had to have a CT scan and blood tests but the main delay was that a sample of the original tumour had to be sent to America where the trial was based to see whether I was eligible to start the trial. The waiting was very very hard. My backache continued to worsen, my appetite remained pathetic and I started to both look and feel worse. All those around me at the time were beginning to really worry as I’d gone from looking a bit peaky to looking like I was fading away. Thankfully towards the end of October I got the good news that I could start the trial. I had my first treatment on October 31st. Claire came with me and we spent a very long afternoon laughing at the comedy amount of blood that they took from me convinced that it was some kind of Halloween game and just desperately hoping whatever they were injecting into my arm would actually work. The nurse who looked after me that day was amazing – her kindness was so different from the very clinical approach taken by the nurses at Barts and so despite the stresses of the day, the horrible back pain and my general fragility at that stage, I knew I was in really good hands.

Treatment on 31st Oct. Two cannulas. Lots of blood taken.
Treatment on 31st Oct. Two cannulas. Lots of blood taken.

The first three cycles of treatment meant that I had to go for infusions, blood tests and doctors appointments for four weeks out of six. This took me from the very end of October to mid January at which point a CT scans was due. My veins were not delighted to be poked at so often but despite the problems with cannulas etc the kindness of the nurses plus the silliness of my sister made it all totally manageable.

However throughout November the back pain continued to get worse. It got to the stage where I was taking the boys to and from school, strapping hot water bottles to my back, taking enough painkillers that I’m surprised I didn’t rattle and very little else. I had to set alarms on my phone to tell me when to take my next lot of painkillers. Eventually the doctor put me on a combination of oral morphine and slow release morphine and this really helped. At the very end of November I realised that I was beginning to feel a tiny bit better, food was starting to look appealing again. Unfortunately I then caught some kind of hideous throat infection which meant I couldn’t eat and despite the copious amounts of pills I was taking I had temperature. Initially Andy was going to take me to our local hospital but it became apparent very quickly that explaining about the cancer, the trial, the drugs etc was going to be very complicated and they were unlikely to be able to help. So instead, he called The Marsden who agreed that I should come in. This led to a delightful ‘mini-break’ in Chelsea where they took lots of blood, gave me x-rays, locked my morphine supply away and eventually let me go to bed at about 2am. Thankfully by the Monday the blood tests showed that it was simply an infection and I was sent off home with some antibiotics to add to my pill supply! As my throat eased up my appetite finally returned with a vengeance and I began to feel more like myself again.

Christmas 2013 was very lovely. I was hugely relieved to be feeling more normal and just loved spending time with my lovely boys and family. I assumed that it was likely to be my last Christmas but refused to let that spoil things or put too much pressure on everything that we did. We very happily said goodbye to 2013 and began to prepare for the impending first scan later in January.

Happy, if a little scrawny still, Christmas 2013
Happy, if a little scrawny still, Christmas 2013

The first few weeks of January went frustratingly slowly but I found myself being torn between absolutely terror about what the CT scan would show and desperation to get it out of the way so that I could know whether the drugs were working. Thankfully January 20th and 21st 2014 were very good days. (I had had the scan on the 20th and received the results the next day). The scan results couldn’t have been better. They showed that all of the tumours had shrunk and some of them had shrunk as much as 50%. I was clearly a responder. I couldn’t have been more delighted and relieved. It also meant that I could start cutting down on the painkillers. I was extremely keen to do this and was a little hasty coming off the morphine. I ended up making myself feel very peculiar with terrible insomnia and peculiar restless limbs plus the slight shame of realizing I was essentially going through withdrawal.

So for nearly 20 months this was kind of it. I had further scans showing continued stability with some further reductions. I continued to go to the hospital two days a week every fortnight. The nurses in the Medical Day Unit, where I am given the infusions, continued to look after me with a level of kindness and thoughtfulness that still astonishes me. My veins didn’t love being poked at but often the cannula would go in first time and even when it doesn’t the nurses are kind and apologetic and never make me feel as though I am at fault. This was absolutely not the case when I did the drug trial at The London/Barts. As a result I didn’t dread my trips to the hospital.

Essentially I got used to living in a kind of contented limbo. Whilst I didn’t love the frequent trips to the hospital I didn’t hate them either. The nurses were extraordinarily kind, the treatment worked like a miracle and it felt like i was actively doing something to keep the dreaded cancer at bay. So, in February this year when I started to feel a bit odd I began to worry…

I was confident that it wasn’t the cancer but I found that I was very tired and lethargic and I wasn’t as hungry as I’d like to be. I did a fine job of trying to ignore it as I really didn’t want to upset the equilibrium but I then began to show signs of colitis – my loss of interest in lots of foods, alcohol, accompanied by weight loss and delightful bouts of diarrhea clearly suggested that things weren’t as they should be. When I’d signed up for the trial back in October 2013 I had been warned about the possibility of side effects from the drugs and colitis was one of the most common ones but I’d assumed that in that i’d been virtually side-effect free for so long that I’d probably managed to avoid them; sadly I was wrong. I reported the symptoms to the hospital and after a particularly bad night I went to equivalent of A&E at The Marsden where they threatened to admit me but instead put me on a dose of steroids and sent me on my way. At my next appointment they explained that I’d have to come off the steroids slowly and that I wouldn’t be able to continue with the trial whilst I was on them or if the symptoms persisted. 

To my relief the steroids appeared to work. I felt much better, the diarrhea stopped, I was hungrier and so I thought I might have got away with it. I was slowly weaned back of the steroids over the course of a month and managed to squeeze in a lovely holiday to Lanzarote with Andy and the boys. It was also decided that if all remained well I’d be able to restart the trial. Whilst we were away I felt pretty well. I did eat, although wasn’t starving and still didn’t fancy alcohol but basically I felt well. So, I was very surprised when on my return, 10 days after finishing the steroids, it all started up again….

I dropped the boys at school and rang my lovely nurse at the hospital. It was not a call I wanted to make as I knew that by admitting that the symptoms had returned I was inevitably going to be taken off the trial. As I suspected I was asked to come in, admitted for 3 days and pumped full of steroids. Again, they worked but in terms of the trial, it was too late. As I’d been put on a higher dose this time it took longer to be weaned off them but I’ve now been steroid-free for a couple of months and I feel really well.

I had a scan at the end of April (over a month after stopping treatment on 5th March) and again everything was stable. My next scan is due next week – 23rd July and funnily enough I’m really nervous. It’s been a long time without treatment but I do feel ok. I don’t have any odd pains, I’m eating (too much in my opinion) and my energy levels are entirely normal but still the fear is there. So, this is where I’ve got to.

I started writing this months ago and so I’ve ended up with 18 months worth of ‘background’. So instead of bleating on further in this section I might start a new post and see what happens….

IMG_2105
Made by a friend. Lives on mantlepiece, shocks small children but makes me smile.
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My story….

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