Not only am I doing a shocking job of keeping this blog up-to-date I’m now posting things in the wrong order so my chronology will be all out of sync!
Back in March I once again joined the amazing MPNE Conference and got to spend a couple of days with extraordinary, inspirational and dedicated patient advocates. The conference was fascinating – I’m always astonished by how proactive and determined other people manage to be. I also surprised myself by being very brave (for me) and agreeing to do a talk about what Knowledge is Power (the theme of the conference) means to be me as a Melanoma patient. Instead of attempting to summarise it I’m just going to add my talk. Here goes…
Knowledge is power!
Nearly 5 years ago, in May 2011, aged 34, I was diagnosed with Malignant Melanoma.
The news came as quite a shock. I had never had never worried about my health and when I’d taken the slightly dodgy looking mole to my doctor I hadn’t expected the situation to escalate.
I wasn’t totally naïve, even at that stage I was aware of the seriousness of melanoma, I had always tried to be cautious in the sun, I wouldn’t have dreamt of going near a sunbed. I was fair-skinned and blond as a child and was well aware that the sun was not my friend. When the Dermatologist examined the mole and suggested that it could be melanoma I had the foresight to ask ‘will this kill me?’ So even back then, I had some knowledge.
The next few months were horrid, lots of hospital appointments, tests, scans, surgeries and by September 2011 the official diagnosis was stage 3 Malignant Melanoma with a scar on my back and one in my armpit to show for it. I had spent the intervening months lurching from one appointment and surgery to another and whilst doing so I spent far too much time trying to get answers from the unreliable Dr Google. I wanted to know whether people survived a melanoma diagnosis, what I could do to improve my chances, I wanted to know how big the scar from the lymph node clearance would be, how long the recovery would take. I had so many questions and to my frustration I struggled to find most of the answers. The doctors weren’t brilliantly forthcoming and the internet, when you’re blindly searching, is a very unfriendly place.
However, by September, when my doctor attempted to send me on my way having given me the clear results of the axillary clearance, the one thing I had learnt was to ask whether there were any trials available for a stage 3 patient. When pushed, he pointed me towards another doctor who was running the Avastin trial and I was duly signed up for that. At about the same time, I was rescued from the very confusing Macmillan Cancer support site and introduced to the really quite amazing Melanomamates group. Finally, I found a real source of information and knowledge.
Melanomamates is a facebook group which was set up to offer support to patients and carers. For me, it has been an absolute lifeline. Instead of flailing around online trying to find answers to questions – I was able to ask fellow patients. I found it just as I started on the Avastin trial in September 2011 and was immediately able to connect with other patients who were also signed up to the same trial. We were able to compare experiences, side-effects, the joys of cannulas, the countdown to finishing our year of treatment it made the whole experience far less lonely. It also provided invaluable information about what to expect as one of the many downsides of being on a trial is that there’s very little actual information available.
In September 2012 I finished the trial and attempted to give myself a break from Melanoma by re-launching my baking business and working very very hard. During this time I stayed in the melanomamates group – it had supported me through a very tough year and it is the nature of a support group is that it should be reciprocal so I was able to give something back as well as continuing to further my understanding of the complexities of melanoma care.
From June through to September 2013 I began to exhibit what eventually proved to be symptoms that the melanoma has metastasised. I so desperately didn’t want this to be the case so didn’t push for a scan and for some reason my oncologist didn’t take note that raised LDH, loss of appetite, weight loss and back pain might mean something and so suddenly 3 months had passed. On September 24th, I was told that a CT scan showed that I had multiple tumours on my liver and in the lymph nodes around it. Despite the absolute horror of the situation, I was still able to ask questions. I asked about potential treatments, I asked whether I ought to talk to other oncologists and hospitals, I asked about my prognosis. The options were limited and I was pointed towards a trial of Vemurafenib with the potential to also receive a MEK inhibitor, I was discouraged from pursuing other hospitals and the prognosis was very bleak. However, due to my contact with other patients and carers I was aware that there were other routes to take and so armed with this I went elsewhere. I changed hospital and I’m certain that is why I’m still here nearly two and half years after that horrible day in September.
I was signed up to the blinded Ipi/Nivolumab phase 3 Checkmate trial and started treatment in late October 2013. For nearly 17 months I had regular infusions, my tumours shrank considerably and I sailed through treatment and relished the new lease of life I had been given. To my surprise, in February last year I began to exhibit side-effects – fatigue, loss of appetite, some nausea and colitis-type symptoms. The symptoms were well controlled by steroids but because of the trial protocols I had to stop treatment. However, as my disease hadn’t progressed I wasn’t unblinded. I didn’t know what treatment I was on – I could guess, the doctors and nurses could guess but no one could know for certain. This was a frustrating situation but as I felt well I was able put it to one side. So for 10 months I ticked along quite happily. My scans remained stable, I had very few hospital appointments and I had the time and energy to really enjoy my life.
During this time I was able to learn more about patient advocacy through the MPNE conference in Brussels last year and their workshop in Sweden in November. I also spent a day at the European Medicines Agency as a patient advocate. All of this continued to feed my desire for knowledge about new treatments, patient experience and the complex bureaucracy that surrounds the system.
Sadly, this hospital-free period ended in January, when a routine scan showed that one of the tumours in the lymph nodes by my liver had begun to grow. At long last I was unblinded and to my surprise I was told that I’d had Ipi and Nivolumab. Suddenly I found myself in a situation where I needed to make a decision and, as it’s cancer I was dealing with – I needed to make a decision fairly quickly. Of course, the system doesn’t really allow for that and it took a while to be unblinded and without that essential piece of information any plans I made were entirely hypothetical. For once, I lacked the necessary knowledge and had to wait. The frustration during this period was immense as it felt cruel to be kept in the dark about something so important particularly at such a stressful time.
As much as I love and trust my hospital I have, during the last 5 years, learnt that you can’t be complacent. All doctors and hospitals have limitations and when it’s your life at stake you have to be brave and look beyond the familiar. Thankfully being on the Melanomamates site and being involved with the MPNE means that I’m suddenly very well connected with people who really understand what’s out there. I was able to tap into that resource and eventually, with that help and support, was able to make the decision to attempt a re-challenge of the ipi/Nivolumab combination.
It’s too early to know whether it’s working as I don’t have a scan until next month but I feel like the decision to give it a try was a good one. I know that my choice of treatment comes with risks but I’ve learnt that us patients are far from risk-averse – there’s a lot we’re willing to do to be around as long as possible. I have two young boys, who are currently aged 8 and 10 – they are why I will keep on taking risks, why I remain involved with the Melanomamates site and MPNE and why I will keep on trying to stay on top of advances in the treatment of melanoma.
Science was never my forte – my background is in managing art galleries and then running a baking business neither of which equipped me for understanding the complexities of drugs with unpronounceable names. I continue to be astounded that you can’t simply be given what would be best for you at that moment in time and instead have to fail other treatments in order to access the one you really want. It worries me that as a patient you have to learn to navigate through the system in order to get the best possible care. However despite being very much out of my comfort zone – I feel as though I am hugely lucky to have been able to access all the information that I have, to have been able to draw upon other people’s knowledge, to have made a decision about my treatment from a position of real strength. It worries me greatly that not everyone is able to do this. Many patients blindly accept what their doctors tell them and they don’t necessarily seek specialist centres – I really fear for these patients.
In January I had a second visit to the European Medicine’s Agency, this time the drugs being discussed were the ipi/nivo combination. The timing couldn’t have been more poignant – I’d just learnt that this is what I’d had and I was waiting for approval to be allowed to have it again. Whilst much of the conversation ended up being very scientific and technical I was able to strongly advocate for greater access to these drugs, to be wary of putting on limitations about who ought to be eligible and to essentially say that as a patient, whilst I wanted to be made aware of potential side-effects, they worried me far less than the thought of not having access to such drugs.
Melanoma is a nasty disease and despite learning everything there is to learn I know that it won’t, in the end, be enough. However, from the beginning, it has been essential to me that my family, my husband, my boys know that I did everything that I possibly could. I don’t want them to ever have any doubts that there was something that I could have done but that I didn’t and this for me is the very essence of why knowledge is important.
So for me, knowledge has been power but as well as that – knowledge is about control and protection, it’s alters the doctor/patient relationship and at this moment in time, I think knowledge is why I’m still here.