As always I’ll give you the news straight away. It’s bad news. The Dabrafamirable is over and Dabrafenib has stopped working in my Liver and spleen, as my CT on Wednesday showed a little bit of growth. Fortunately the brain lesions are playing fair and are stable. But it’s crap. I’m one strike down. But we have to praise Dabrafenib, it did it’s job and in me it did it’s job better than most. The tumours shrank to a level where they are not causing me any symptoms and this is from a level where they would have very quickly killed me. Due to it’s fast acting nature it is the only drug that would have saved my life. So thank you Dabrafenib, but your days are numbered. It had seemed to be going so well, Dabrafenib was just beating the big C back holding it at bay. Actually I was getting used to it, the Melanoma was happy and so was I. Instead the Melanoma has got greedy and wants to carry on it’s pursuit, which if left unchecked will kill us both. You die with me melanoma, I just wish there was a way of telling it that.
The news came at a bad time too. I had the CT a little early due to a clerical error. But as I had found a small lump just below my belly button I was eager for the date not to be changed. That was biopsied the week before and we are still awaiting the results from that, but it is likely it is a subcutaneous (just below the skin) lesion of melanoma, given that we now know the melanoma is active once more. As always despite the melanoma happily ticking away, I remained asymptomatic. I heard the news while I was in Georgie’s car driving up to the British Association of Skin Cancer Nurse Specialists Annual Conference in Birmingham, where I was due to be the pre-dinner speaker. I was pretty much the first speaker at the whole conference. They’d been very accomodating and they’d given me two rooms one for Mum and one for Georgie and I. It was at the Hilton and it was going to be a very pleasant evening indeed plus a good chance to wander around the conference the next day and hear about progress in melanoma.
I wouldn’t usually call for CT results, but I was waiting for the biopsy result too, and my Nurse, said she would ring. Being impatient and feeling anxious about it I rang in the car. She got to the point quickly “it’s not good I’m afraid” then told me. I was stunned, Georgie cried whilst managing the car racing down the motorway. I called Dave and he somehow knew from the timing when I rung that it was bad. Then phoned Mum, who also guessed because I’d just text her to say we were twenty minutes away from her at the conference.
As I turned up Rowena and Huw from “Before I Kick The Bucket” were there, the way I’ve written this sounds like it was a large coincidence, but of course it wasn’t. We’d arranged to film the speech plus a little interview with Rowena as a follow up from the first show. It’s so annoying because I desperately wanted to show them and the viewers how well I was doing… because I was. Row’s has had some significant setbacks with her own treatment, but is somehow is blindly carrying on. It was therapeutic seeing her as she stays positive despite everything. Although I was interviewed before, we had to pretend that it was just after the talk.
The talk itself was daunting, I had been very anxious that morning about both the talk and the results. I was determined to make one of these good. People have asked me how I can get up and talk so candidly about such a personally emotive subject. The answer is I don’t really know, it’s partly just because my life is so surreal when I’m up there “performing” it feels like someone else is saying it and doing it. Then the reason I managed to get on the stage in the first place is the blind determination I have to tell my story. As cancer patients we need to scream and shout about it, because as I’ve said countless times, we need support. On my table a gentleman who ran one of the largest melanoma charities, made another point too “it’s amazing that we spend so much time and money funding projects to cure cancer in the UK, but when the drugs come out we’re so slow and resistant to actually funding them”. His point is if we were never going to fund them why did we bother researching in the first place.
My talk is below and I the subject was “Living with Melanoma”. You will realise that some bits were no longer true. I didn’t have the time nor the emotional energy to change them, instead I just cut it as I spoke.
Living with Melanoma.
After many months I went back to the hospital, where I was diagnosed with stage four malignant melanoma. This wasn’t particularly deliberate but I was placed there to work as a Doctor in Kingston hospital. The walls which reminded me of the worst day of my life. What a difference a day can make. It was a cruel twist of fate in what has been a rollercoaster year of fighting for my life and meeting the love of my life. There are many days in your life that are unmemorable and unremarkable. Think about all those days where you just washed the car, or took things to the tip, or played with your kids in the park. Those normal days. Those brilliantly normal days. Where you were just content. Melanoma has taken normal days from me, now every day is a miracle or a Dabrafamiracle.
It all started in 2003. A Sunny October day. I went with my Mum to Frenchay hospital, where I’d been referred under the two week wait. I had been for a hair cut a week before and something odd happened; the shaver hit a lump on right side of my head, the barber had a quick look himself and said nothing. I was only 15, I had no idea what was going on. Fortunately I was trying to have a good look at the thing in the hallway mirror when my mum came in. Stopping this twisty head fit she had a look herself. I was seen very quickly and the thing was biopsied and diagnosed as a nodular melanoma and it was thick, greater than 5mm. The harsh reality of this was communicated to my family and I; but it took years for me to finally understand what this meant. I had another melanoma at 17 caught very early. Family history was properly documented and then tested. It was confirmed that I and many of my family had a was had a mutated form of the tumour suppressor gene P16. Melanoma had blighted my grandmother, aunt, my father and me, and after I was first diagnosed my brother Paul too.
My point of contact after the primary was Jo Watson my specialist skin Cancer nurse. New lumps kept coming up mostly my right neck. The most worrying side, the lumps were tested with fine needle aspiration. Fortunately always normal. Cancer Nurse Specialists offer such a good point of contact and help maintain the continuity of care. Each time Jo would turn up to my appointments and be there to allay my own and my parents fears.
Melanoma changed my decisions in life I applied to medical school not only to help people but for my own self preservation too. I wanted to understand disease. Thankfully I was given a place at Leicester and I started in 2007.
Another day changed by melanoma. My first day at medical school was different to most, while everyone else stood in the queue to see an occupational health nurse, I was rushed to the front, to see a doctor. We chatted for ten minutes. I actually wanted to be in the queue, people seemed to be getting to know one another and I was missing out. About 3 months into medical school, another day was changed. While fact after fact was speedily verbalised to us and quickly forgotten, only to be relearnt before the exams. A fact waiting for me was in a Tissues of the Body lecture. Skin. Cancers of the skin. My concentration heightened by the word melanoma. My enemy before me. Breslow thickness. Hmm 5mm the worst thickness. 45% five year mortality. Wow. It had been four years by then almost to the day. I felt sick, all these facts about disease that we were told, just floating over us. You forget each disease is someone else’s personal story. It’s lost in all that fact. Each persons lives are changed by their diseases. You forget; there’s only one thing you need. Good health.
My care was transferred up to Leicester under Dr. Osbourne, as time went on I hit the five year mark. I remember just drinking a shot of whiskey to myself in the dark late at night after a medical student event. Cheers Mr Mercer my plastic surgeon, and to Jo my skin cancer nurse. I was winning, and for most of those five years not even knowing it. Melanoma changed my life from the beginning Mum and Dad were very encouraging for me, along with my twin brother to see the world and we went travelling in Europe in our gap year because of that.
At Leicester we had the opportunity to take a year out of medicine and go into research, for an intercalated BSc. My sole reason was to get a publication, I wanted something there left in the ether that will always have my name on it. Choosing my supervisor predominantly on the man himself; friendly, unassuming and passionate about his research. I went one better and secured a first author publication. Sims et al forever there available to google.
At ten years.
That fear lost, the nightmare had been put firmly behind me, the nightmare that is metastatic melanoma. I knew a lot about it, the more I learnt about melanoma the more of a bastard it sounded. If cancer had an Evil King, Melanoma would be it. Resistant to all treatment when it spreads, also cases where the cancer had spread but the primary had seemingly vanished. Furthermore nonpigemented melanoma, where the Wolf has disguised itself, making it notoriously difficult to diagnose.
But I thought I’d beat my nightmare. I’d done it I’d become a doctor for self preservation, and had monitored myself a lot. Checking my lymph nodes once a month, follow up every 4-6 months. Multiple other small ops, for potential new primaries, lipomas removed in case they were a lymph node. Multiple ultrasound scans on other lumps and bumps too. I thought my vigilance had paid off. I spoke to my parents about a celebration, they said keep it low key, don’t want to tempt fate. I invited quite a few close mates to London and we joined my works pay day party. I overindulged and cheers the last ten years many times indeed. After all I had survived cancer, even my dermatologist felt that too.
Cancer became forgotten I still checked myself whenever I thought about it. I went in November 2014 to see my dermatologist, contacting Ian Gosling, my specialist skin care nurse in London. I urgently wanted them to see them for a new tiny lesion on my right arm. This is how anal I was, despite Dr Lacey being a very experienced dermatologist, it was too small to assess even with a dermatoscope . It was taken off anyway, a benign Spitz Naevus. But I was unaware that was the least of my worries.
Another day, pancake day this year. I’d been to the GP a week before about a cough that was getting worse over three weeks, I wanted antibiotics, I’d never had a cough for that long. She declined and said come back in a week. Between then and pancake day I went for a ten mile run. Along with that I had been preparing for my A&E interview to get a job for the next three years. A lot was going on in my life. Pancake day… after chewing through many pancakes I started to get abdominal pain. It kept going by the morning I could barely walk, I went to the GP she called an ambulance, I was admitted to Kingston hospital. Query Cholecystitis. But actually it was Cancer, cancer, cancer and more cancer. It was in four organs, liver, lung, spleen and gallbladder. How did I miss it, all symptoms I put down to other things I was applying for jobs, my personal life was in disarray and I was training for a half marathon. The nonspecific symptoms of weight loss and general malaise could be rationalised. The cough well, likely upper respiratory tract infection, it was winter after all.
The news was told to me at 5.30pm but I knew minutes before as Saiskia came into the side room at Alexandra Ward in Kingston Hospital. The text on the badge gave the game away. Skin Cancer Nurse Specialist. The morphine haze readily being challenged, instantly I was almost sober, I’d been refusing more opiates because from the look on the radiologists face, at the ultrasound I was fearing the worse. I wanted to be level headed. My first thought “I’m F…ked.” MY worse nightmare had hit me, despite everything, diligent follow up, becoming a doctor I was caught was my trousers down. I was upset just about the stupid Spitz Naevus. Now I had more cancer in my abdomen than normal viscera, LDH a marker of disease whopping “1234” over ten times normal. Saiskia was there with me for over an hour. From the beginning she gently slipped out the good news,BRAF inhibitors, ipilumamab. Even the smaller detail was good news. “Melanoma notoriously presents like this”, she told me, maybe I wasn’t an incompetent doctor. I had a look at the literature from time to time, but to honest after the ten years I’d got sloppy. Ipilimumab I understood to be effective in some but not many, and the BRAF inhibitors I knew had their lifespan 6-9 months perhaps. Overall it still seemed bleak. what’s this PDL-1’s inhibitors. Now they were a pleasant surprise, perhaps I had a bit of time.
On my 27th birthday as well as having a liver biopsy, which later showed I was BRAF positive I was started on the BRAF inhibitor Dabrafenib. From the second I took it, at 10pm that night I felt a bit better. I woke up the next morning, by then in the Royal Marsden hospital, bloods started to improve. LDH was falling. Over the week I started to feel more high as the pain was now over controlled. Being a doctor not only helped me work out the gravity of the situation but actually changed my management too, on the second day of taking Dabrafenib, I consulted the BNF, it advised against omeprazole which I take for heartburn, phew it may have affected its efficacy if I hadn’t been checked.
At day ten as an inpatient I was let home. i stood outside the Marsden it was a real fresh air moment, the last three days I was getting cabin fever as I was no longer “sick”. Surprised I was still alive, what’s more … well.
After 9 weeks off I went back to work. I’d been allocated to psychiatry as the environment was a bit more relaxed compared to A&E where I was due to start. As time went on I remember feeling wow Dabrafenib is just an inconvenience yeah that might sound like an understatement, but at the moment it is just that, with a few oddities thrust on me due to Dabrafenib. The first being curly hair, the second having six hours a day when I can’t eat. It requires the taker to not eat two hours before and an hour after. Having the tablet at 10am and 10pm, has led to many a disrupted meal time and usually missing the desert.While in Psych at the Thursday morning meeting, the team manager was leaving and she’d bought in some Krisby Creme Donuts, I sat there for an hour and a half staring at these succulent items before I was able to have any. I try to be as strict as possible to give myself the best chance of using dabrafenib for as long as possible, hopefully, albeit rarely for years. I won’t even suck a sweet in those six hours. Apart from that Dabrafenib has left me in this weird limbo… I’m seriously ill; but I’m not?
Living with melanoma quite obviously has changed my life, but even the small things too. I recently drove from Leicester to Warwick for an locum shift starting at 8am, I arrived thirty minutes early, and sat in the car park for a bit. I then made my way to the ward, spoke to the orthopaedic secretary, who was surprised to see me.
“I’m here for the 8-4 shift” I said
“I think you’ve come a week early”
Now this would be annoying for most people and it was… but for me I did not want to waste a day. Instead I did plan B. I went to Warwick castle despite wearing a shirt and trousers and looking thoroughly out of place. It was great. Saw the tours and was thoroughly entertained for three hours. The day got better, there it was in my email… Pembrolizumab has been approved by NICE. So what was a bad day, went from a good day by thinking positively to becoming a great day by external forces.
My point is having stage 4 melanoma not only changes the important things in life, it changes everything in your life, your priorities, your outlook, you have to worry only about now, because the future is so uncertain.
You only have one life.
There’s pressure too, weird extrinsic pressures put on you. People have an opinion on how I should be living my life, when I would love a good bit of normal. People feel I should be off travelling the globe, or worse just rolling around helpless and giving up. I was asked in Kingston hospital what is in my bucket list, I’d not thought about it, then I shouted “go to Leicester”, simple as that’s where i went to uni , I made other plans too. It takes a degree of mental effort to fight off the negative forces in my mind but mostly I’ve held them back. Cancer is strongly associated with depression. Yeah but being depressed isn’t for everyone. The next thing on my bucket list was also simple, I wanted to see everybody, I had so many family and friends visit me in the Marsden I was given a side room. I also wanted to go to every EU country only needing two go to to. Luxembourg with my parents, and managed a big trip with friends to Malta. Both trips were great and not many people have been to all 28 EU countries before they’re 28. But personally I’ve realised that there’s a great deal of satisfaction enjoying normal. A night in watching The Notebook, with Georgie, my girlfriend. Life doesn’t need to be a “have you done this list”, it should be “are you happy right now?”. My bucket list was simple, so simple I’ve completed it, the last item being a best man for my Twin brother Dave all thanks to Dabrafenib.
I was reminded recently that a day can change everything. Everything was going so well, I feel Dabrafenib was tricking all of us into a false sense of security. I had shrinkage everywhere and having seen the scans with Georgie, I’d gone from the images looking abnormal to it actually being quite hard to work out what’s wrong as I’ve had 80-90% shrinkage. But this day was mixed as I’d been to Leicester A&E to get a job there and they were very accommodating to my situation and offered me 20 hours a week. Great, it’s right next to my girlfriends house and I went back and celebrated with Georgie. I rang my parents they were pleased, it all seemed so… brilliantly normal. A nice regular job in the speciality I love, as well as not getting in the way of the fun things in life. Cruelty melanoma hit me then. A phone call, an MRI head I had the day before, booked just to check if I was ok to fly to South Africa for safari, it had found brain metastases. I’d had a CT in Kingston in february and the implication, due to a stable follow up scan, is that they were always there and the MRI was just more sensitive. At least Dabrafenib is working on them but being told you can’t drive and fly, makes you seem all more of a patient.
A couple of days afterwards I was feeling very low. Georgie recommend going to see the GP for some antidepressants. She was right I was exceptionally low, I didn’t want to do anything, and I was starting to feel that life wasn’t worth living. I wasn’t sure about antidepressants that much but before that, I’d not felt the true helplessness of depression. Starting sertraline seems to have helped but mostly the support from her and my family plus good results since have helped pull me back on course.
I started on A&E three weeks ago, it is very normal and it’s great I can get stuck into work for ten hours. It feels as if I’m really giving something back again. My big bugbear is pain control, it took a long time for me to get morphine when I was in A&E. After checking a patient is stable, my next concern is their pain and prescribe it quickly and check it’s been given. My routine at the moment is two days a week working and spending time with family and friends but mostly trying to have as much quality time with Georgie as I can, including a lovely holiday to Scotland. Every day worrying that we won’t have enough time together.
I started writing a blog early on, it’s something I’d recommend to anyone in my position. It helps keep life a bit more normal, if it’s bad news then everyone can read it and just carry on. If it’s good news then can say well done and not dwell on the subject for too long. Because I’ve found one of life’s most simple questions “how are you?” so seemingly difficult to answer, saying fine is a lie, but I feel if I told them everything that was going into my head it would be far too much and may lower everyone’s mood and mine. It has also attracted a few other melanoma sufferers and their families and it’s great to interact and hear their stories particularly those who’ve used BRAF inhibitors for a long time as well as passing on my medical knowledge to help others.
I think it’s quite telling that the single best thing I did was begin fundraising. At literally my lowest point in this whole story, I wrote a justgiving page and poured my heart out. I had just woken up in the Marsden after vomiting all night thinking wow this is it. I told the world what had happened to me and I wanted to raise money to make it not only better for the next generation of cancer patients, but I wanted to honour and praise those people who’d gone into drug trials before me, many of them who would have died, so I could have survived. I’ve now raised £50,000 for cancer research UK. It’s a large chunk of money and will fund at least one PhD which could give us that next therapeutic target against cancer. But raising money has improved my life in lots of ways, people called me “inspirational” I’m not, I was asked to talk at Westminster School and my medical school. The first meant speaking in Westminster Abbey of all places. This led to a year 10 student running a 10km for CRUK raising £1500.
Along with that I have been on the radio and TV. The TV programme was called “Before I kick the bucket” and was about how young terminally ill people want to lead their lives. It was great to be apart of it and tested boundaries. Showing actually you can “live with cancer and opposed to dying from it”.
The second talk, became the best day of the year so far. The 27th of March. It started badly my friend, who was due to drive me up to Leicester, had overslept and we arrived late. I hurried in spoke to the audience of mostly medical students about how I was and about melanoma. Then me and my clan went to the pub. Then a bar. I was drinking coffee, I rarely drink now. In the bar a lovely young lady came up to me, she told me how much she liked the talk and despite everything Georgie saw through the melanoma and saw me. We’ve now been dating for seven months and she’s the love of my life. There it was the most simple thing on my bucket list “go to Leicester”, led to the greatest outcome, finding love.
Falling in love during the worst year of my life has been emotional. Not only do I have to comprehend that my life will most likely be cut short or the loss my family will feel when I’ve gone. But I’ve got Georgie on board in my rollercoaster life. For her, and people have questioned her, why she got involved, but Georgie’s answer is simple; she fell in love with me. We both know we’ve met Mr and Mrs right and we talk about the future, perhaps it’s wishful thinking, but we both know how great a future together would be. It’s a mixture of building ourselves up to fail, but also a desperate desire to be normal and to have what other young couples have, and that’s each other for eternity. From this experience I’ve learnt that only two things matter to be happy, to find the love of your life and to have a great family. I’ve got both, but we all fear that melanoma will cruelly take it away.
I would like to thank you for having me to talk, I would like to take this opportunity to thank all skin cancer nurse specialists for the vital role you have in care for people like me. I like to thank all the staff involved in my care currently at the Royal Marsden. But particularly to Saiskia firstly for inviting me, and on behalf of my family and friends we’d like to thank you for all for being very supportive and for your very speedy referral to the Royal Marsden in my time of need. Thank you.
The next steps
If I had made it to just January the plan would be slightly different and perhaps more preferable as the guidelines were due to change. Therefore I would have received Pembro first + I may have gone into the pembro/t-vec trial, both due to be open in January). However the plan is therefore Ipilumumab, then Pembroluzimab.
Dabrafenib , Ipilumumab and Pembroluzimab
Three strikes and you’re out.
Ipi has a ⅕ chance of working and if it does it typically works well. Pembro works in signifcantly more people somewhere between 33-65%. Both can work on brain metastases. Unfortunately you can’t continue Dabrafenib whilst on Ipi as the combination of the two is severely hepatotoxic (Liver damaging). Ipi is generally still better than regular chemotherapy in terms of side effects, but we will see. Dabrafenib was an oncologists dream. Goodbye Dabrafenib Long live ipi.
As always Paul was first to start sending me more papers, the first being (http://news.sciencemag.org/biology/2015/gut-microbes-give-anticancer-treatmentsboost). Before someone just blindy agrees with an article it’s just worth quickly thinking about the validity of the sources. It quotes two papers which were published in Science, a good journal, and both used mice so not necessarily relevant to me. The first trial they gave mice (who had no gut bacteria at all) either faeces from Ipi treated patients or Bacteroides rich faeces. In both cases the influx of microbes improved the response to ipi. The second trial quoted gave mice lacking Bifobacterium species, a supplement to replace it this promoted antitumour immunity and facilitated anti-PD-L1 efficacy (Pembro). I would recommend reading the article in the link. Georgie and I went hunting for this bacteria in health food shops and found Bifobacterium very easily. Bacteroides was no where in sight, nor is it anywhere on amazon. Then after more googling there’s a very good reason for this, they don’t live outside the gut for more than a few minutes so are unable to put in a supplement, as they are obligate anaeobes, in other words they don’t like oxygen. I wouldn’t recommend this to anyone else, but it shows how desperate I am for a response to the drug as few people do respond. I repeat both trials are in mice and the first trial the mice didn’t even have any bacteria in their gut in the first place. I’m a human and I’ve been habouring my bacteria for 27 years now.
Well this is it really, I’ve dealt with it a emotionally a bit better than finding out about the brain mets, mostly because at least I was expecting this setback, nevertheless it’s a disgustingly huge blow and it meant quitting my job too. So I’m now a full time patient.