Lucy’s Story

“The information available on the Melanoma Focus website is extremely detailed and thorough both in terms of the disease itself but also the various treatments and a glossary to explain the terms you may hear about.”

In May 2011, after a certain amount of hassle from my lovely husband, 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 recognised that it was a melanoma and arranged for it to be removed immediately.

The doctor was right, it was a 1.1mm melanoma and by September that year I’d had further surgery to remove a wider area of skin around the original mole and due to a positive Sentinel Lymph Node Biopsy (SNLB) (common in 2011 if your melanoma was over 1mm) I’d had the lymph nodes removed from my right armpit.

Thankfully this showed no further spread and we celebrated by raising a glass of fizz. I knew with other types of cancer at stage III it was generally fairly standard to throw some treatment at the situation but to my surprise I discovered that chemo and radiotherapy don’t do much for melanoma and back in 2011, unlike now, there was no approved adjuvant treatment.

The only option was to find a trial, and the requirements for this particular trial meant that the trial treatment had to start within a specific period of having surgery. Luckily for me – after asking the right person the right questions, I discovered that my hospital was running a suitable trial. It was a randomised two arm trial and I got onto the ‘new’ treatment branch and so every 3 weeks for a year I received infusions of bevacizumab (Avastin) and was reassured by the regular checks that went hand in hand with being on a drug trial.

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.

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; my baking business flourished, I looked after my boys and 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. At a visit to my GP in July he mentioned that one of my recent routine blood tests was showing as unusually high LDH level. 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.

However, in August that year I totally lost my appetite and that combined with the back ache worried me. I contacted my oncologist, and my September appointment was brought forward by a week, and they put in a referral to the psychologists as they suspected I was suffering from ‘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. 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.

On Sep 24th, 2013, my sister and husband 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 multiple, sizeable tumours on my liver and porta hepatis and on the blood vessels and lymph nodes around my liver. Metastatic spread meant that I was stage 4, the tumours outside my liver meant that it was inoperable. I asked my doctor 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 grow up had just become a reality. By her reckoning Christmas was looking pretty bleak.

By this stage, I felt that my signs of progression had been clear and her suggestions for treatment options seemed very limited. Whilst I knew that there were only a couple of options for treatment at that time – I managed to transfer my care to a different hospital.

Thankfully the treatment landscape has changed enormously since 2013 and the treatments that were either difficult or impossible to access back then are now a standard of care. My best option at that time was a clinical trial. The trial my new hospital suggested for me was a 3-armed blind trial – group 1 would get ipilimumab, 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.

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. There was what felt like an agonizingly long wait to get onto the trial. 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 sponsor 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. Thankfully towards the end of October I got the good news that I could start the trial.

The first 12 weeks of treatment plan meant that I had to go for infusions, blood tests and doctor’s appointments for four weeks out of six. This took me to mid-January at which point a CT scan 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 who accompanied me made it all totally manageable.

However, throughout November the back pain continued to get worse. It got to the stage where I was taking my 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.

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.

On January 21st, 2014, I had my first scan and to my astonishment it showed that all of the tumours had shrunk and some of them had shrunk as much as 50%. I was clearly a responder. 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.

Unfortunately, in February/March 2015 I began to experience side effects from the trial drugs. Obviously, due to it being a blinded trial, it was impossible to know what I was reacting to and, as the drugs were so new, any side effects set off alarm bells as the protocols for dealing with them were less defined. I ended up on steroids and spent a few days in hospital and whilst the side effects were successfully managed it was the end of me being on the trial.

Thankfully my scans remained stable, and the decision was made that I should stay off treatment – the only option at that point would have been targeted therapy and with my cancer appearing to be stable the hope was that the immunotherapy I’d already had would work for some time.

Well, it gave me 10 months and so in January 2016 I had the horrible experience of a scan that showed my cancer was once again growing. We were devastated. I was finally unblinded from the trial and to everyone’s surprise it emerged that I hadn’t just had nivolumab, but I had in fact had the best option the combination of ipilimumab and nivolumab. On the one hand this was kind of amazing as I really had got lucky but on the other slightly terrifying because it hadn’t, in the great scheme of things, kept my cancer under control for that long.

After much discussion and between me and my doctors it was decided that the best plan of action was for me to privately try a re-challenge of ipi and nivo. Again, I was very lucky and only experienced minimal side effects and after the first four cycles my scan showed that once again the drugs were working, and the tumours were smaller again. We sighed a massive sigh of relief. A further scan 6 weeks later gave us a scare when it appeared to show progression but thankfully, this turned out to be pseudo progression as it had reduced again four weeks later. The decision was made was for me to continue with regular scans but no further treatment at that time and we just hoped that the blast of immunotherapy I had been given would once again keep my cancer under control and it did, for a year… and then it didn’t…. another tough scan and another treatment. This time pembrolizumab.

For just over 18 months pembro once again shrank the pesky tumours and stabilised my cancer. The side effects were minimal, but the fatigue did begin to really impact on my life. It’s one of those tough side effects to get your head around as for me, it seeped so slowly into my life that it’s only looking back afterwards that I realise how tired I was and how much I reshaped my life to manage the symptoms. But still, I was alive – can’t complain about that.

Then in December 2018 – about a week before Christmas, to my shock, the scan showed that pembro had stopped working….. I was devastated. Immunotherapy was potentially ‘curative’ and I had begun to believe that maybe I could just stay on it, with the odd break, long-term and suddenly I was being told that for the first time, I had failed treatment.

Once I’d adjusted to the bad news it was time to consider the possibilities and thankfully, I still had targeted treatment as an option and in January 2019 I started on the encorafenib and binimetinib and, amazingly, over 4 years later I’m still on these pills and for now, my scans show that the cancer is stable.

Generally, I have found enco/bini very easy to tolerate – it’s main and most comical side effect is that it turned my dead straight hair crazy curly but beyond that other than the odd bit of nausea I’ve found it very tolerable.

Last summer I had a scare when one of my routine brain scans showed ‘something’ on my brain but after what can only be described as an agonising month of worry, a second scan showed that the ‘something’ although still there had shrunk. Since then, it has continued to reduce, and it seems likely that it was just a very scary anomaly. So, for the time being I just keep taking the pills every day and crossing my fingers they continue to work for me for as long as possible.

The fear remains but I am extremely aware that I have been incredibly lucky with both access to treatment and my generally positive responses to treatment and the fact that I have just kept on hanging in there means that it’s nearly 10 years since that stage IV diagnosis.

I have found living with melanoma extremely hard. I never thought I was the sort of person who’d get cancer, I have never gone near a sunbed, and I was never a sun worshipper – I have just been unlucky. When I was first diagnosed with melanoma my boys were just 3 and 5 and when I was diagnosed stage 4, they were only 5 and 7 and my greatest fear was that I wouldn’t see them grow up. The fear remains but I am extremely aware that I have been incredibly lucky with both access to treatment and my generally positive responses to treatment and the fact that I have just kept on hanging in there means that it’s nearly 10 years since that stage IV diagnosis and my little boys are now enormous great creatures who are now 15 and 17.

Back in 2013, people diagnosed with advanced melanoma usually died within a year and that makes for an absolutely terrifying diagnosis, and I struggle with my diagnosis date every September. However, the treatment for melanoma has changed so radically in the last 10 years that there are now a number of approved treatments and there are also options for adjuvant treatment which will hopefully continue to improve the life expectancy for those diagnosed with melanoma. Despite the fact that I’ve clearly benefited from all the developments in treatment, I have also lost countless ‘melanoma’ friends to this disease – there is still so much more that needs to be done to improve the situation for melanoma patients.

What advice would you give to other melanoma patients?

“My experience so far has taught me how incredibly important it is to be your own advocate – to make sure you are thoroughly educated about your disease, to make sure that you ask the right questions to the right people, that you trust your instincts and that you always push as hard as you can for the best possible treatment option.”

My experience so far has taught me how incredibly important it is to be your own advocate – to make sure you are thoroughly educated about your disease, to make sure that you ask the right questions to the right people, that you trust your instincts and that you always push as hard as you can for the best possible treatment option. It’s not easy but I am convinced that the decision I made back in 2013 to change hospital, to seek better treatment, is why I’m still alive and at every point along the way when a new decision has had to be made, I have always done my own research to make sure I think it’s the best and not necessarily the easiest, option.

I have also found that talking to other patients and sharing experiences has been hugely valuable and have been a member of a melanoma forum since 2011 as well as being involved in a European Melanoma group and attending the Melanoma Patient Conference. There is huge comfort to be found in talking to other people who are experiencing many of the same things that I am. Alongside seeking support through other patients I have kept myself reasonably sane with counselling, talking to friends, a lot of exercise (I ran 1000 miles last year and spend a lot of time throwing kettlebells around) and writing a blog about my experience which I have found hugely cathartic.

Despite having had so many more years than I had expected based on what was a very grim prognosis and despite all the things that I do to mitigate the anxiety I still very much live my life in 12 week cycles as dictated by my scan schedule. Every scan feels marginally more frightening than the last one as I feel more and more as though I’m somehow pushing my luck and, to be fair, I am currently on a treatment which the cancer will eventually work out how to evade and there’s no obvious next treatment step for me. Instead, it will very much be looking to see what trials are available or whether I’d be able to perhaps access further immunotherapy and whether if I were lucky, that might work again…

Melanoma Focus is an amazing resource not just for offering advice through its helpline but for providing the vital tools that patients need to make educated decisions about their health. The information available on their website is extremely detailed and thorough both in terms of the disease itself but also the various treatments. Plus with their Melanoma TrialFinder it’s no longer a case of hoping you happen to speak to the right doctor at the right time, as I had to access a trial back in 2011, it puts the power into the patient’s hands by providing the relevant information.