So just found out I’m BRAF positive from my clinical nurse specialist this morning. This is very exciting news as the medication I started on my birthday should be working. I am very grateful all the presents I received that day I think you’ll all agree the NHS gave me both the best and the worst (liver biopsy) presents that day. About two minutes after that I was phoned by this media (more on this,if it comes to fruition) so weirdly the first person I told the news was someone I’d never met, she was delighted by the way. I then rang all my family and here we are, the fastest event to blog post yet. 

What does this all mean? Well roughly half of all melanomas have BRAF genes, so first hurdle jumped. The drug I’m taking dabrafenib is a BRAF inhibitor which causes tumours to shrink in about half of the people who have this gene change, and in the other half it suppresses growth. Therefore for me it should firstly prolong my life, secondly reduce my opiate requirement (read reduce the pain) as the liver capsule should become less stretched, reduce the fevers I was having (it appears to have already done this) and settle my cough. The spleen doesn’t really have symptoms associated with it! (See YouTube video what does the spleen do). Tentatively it seems to be doing all this without any side effects, it’s typically s very well tolerated drug despite the long side effects list.

So what is BRAF? It’s a gene that makes a protein called B-Raf which is involved in directing cell growth. Mutations in BRAF can disrupt cell growth and cause cancer by causing uncontrolled replication of cells.

A lot has happened in the 12 years since I was first diagnosed. Vemurafenib (Dabrafenibs older brother) was only FDA approved in 2011 . The treatment prior to this was dacarbazine which only about 10percent of patients responded to treatment and not for very long with a lot more side effects. Unfortunately the melanoma will eventually evolve to overcome the BRAF inhibition after about 12 to 18 months. This has vitally given me time to try the potentially curative (and very often life extending) treatment ipilimumab, a monoclonal antibody, which works by modifying the immune system so it can fight against the melanoma* this was only approved in 2012. The lastly the third line therapy Pembrolizumab another monoclonal antibody works in a similar way to ipi but targets programmed cell death 1 receptor and has been FDA approved in 2014 which again is showing huge promise this is under NICE review. 

I was doing my best to try and keep it simple but to be fair even as a doctor these things aren’t easy to understand. I’ve got no idea what other patients do. As you can see the 12 years between primary and secondaries has given me treatment options, in 2010 I would have had nothing at all let alone NICE approved tried and tested therapies. This goes to show how incredibly vital further cancer research is, the breakthrough in treatments against melanoma, which was such a hard nut to crack, shows the fight against cancer can be won.

*for the scientists this down regulates  CTLA-4 in the melanoma which inhibits cytotoxic T cells from attacking it. Therefore inhibits this inhibition therefore allowing the cytotoxic T lymphocytes to again recognise melanoma cells and destroy them. 

Thanks to everyone reading this, my just giving page was spread widely enough that it started getting some media attention. Only a week after diagnosis I was courted by two journalists. The first suggested Women’s Own magazine first and then to hit nationals afterwards. The idea was that I would actually get paid an undisclosed fee if it were to go to women’s own first. Therefore they actually approached my mum first and interviewed her then got some quotes from me too, I would’ve gone with this angle, as they said I’d be able to see the manuscript prior to any publication. Then I was approached by The  Press Association who insisted actually the other journalist couldn’t possibly offer that for copyright reasons. Then the first journalist said that any exclusivity agreement I signed with the Press Association wasn’t worth the paper it was written on and would welcome me back at any time! So you can see the infamous British tabloids work in a murky world.

I kept with the Press Association mainly as I’d had a longer chat with the journalist, and she wanted to go national faster. After about 6 hours she did a “read through” where she said please interrupt whenever you’d like to add or delete anything. I Managed to squeeze in a little bit of health promotion in the first draft and that all important link to my just giving page. Interestingly they did this without coming to the hospital, just a phone interview and they ask you to take the photos plus raiding your Facebook for other pictures. So much for investigative journalism.

The article was published in the Mirror (“The intelligent tabloid”) on Monday with no email from the Journalist to say it had been published (as promised) and most of my corrections excluded. Actually overall pretty happy with it, the last line about triathlons is very cheesy, I’m fully aware I’d much rather be competing for a triathlon, although I’m a useless swimmer. We chatted for about thirty minutes and at some point I quoted most of a friend’s* post about how raising money from my bedside was more arduous than other people’s very honourable money raising pursuits. Plus I did go over that I wasn’t an orthopaedic trainee. However I liked the photos and glad my fy1 colleague’s framed photo from the Croydon summer ball got into the daily mirror. 

*lanky with small eyes

• See everyone

Since being diagnosed people have been asking me what is on my bucket list. Even on day 3 my IFA friend asked me I think just after waking from a opiate soaked nap, “what is in my bucket list?”. My reponse was “I want to go to Leicester!” Not quite the grandiose response he was looking for. However I stand by my first decision and it is firmly on the list. Quickly people asked me via text etc. whether they would come and visit I insist on a hive of activity around me, and I still do. I want to spend my time seeing all the people that matter to me, not spend day to day twiddling my thumbs, which is an endless list. So watch this space for ElecTOUR reunion (my elective reunion) and a rave in Leicester

• Leicester  

I feel everyone should have their own bucket list as we are all mortal. As I’ve always been wary that my cancer could spread at any time I had things that I’ve wanted to do for ages. The fundraising it was actually something I’d meant to do countless times and should’ve done. However writing the just giving page when I was at my lowest and pouring my heart out seems to have resonated with a lot of people. (Thank you ).

• Be a best man

Being given the diagnosis that I have, obviously focuses the mind. In the same way I’ve always wanted to help people from my secondary school get into medicine. Something again I’ve never got around to doing, but I will they just don’t know it yet. So if you’re reading this get out and do that thing! I really wanted to go to Glastonbury and thankfully I ticked it off last year.

• Let Dave win at chess

I want my bucket list to keep changing too. I’ve had some offers that I’ve never had since the news has come. I’ve been invited to speak at Westminster school prior to their charity weekend to raise money, thanks to my friend who is a teacher there. Then, I am not one hundred percent sure this will happen, but I’ve been invited to meet a Rabbi regarding my Jewish heritage.

• Complete the EU

The only real grand and slightly weird ambition that I have is to go to all the countries in the EU, as I’m painfully close to going to all 28 before I’m 28 years old. The plan is to get to Luxembourg any old how, then organise a trip to Malta with anyone who wants to and definitely Dave so we will both have completed the set as we land in the airport.

• Write a blog like its a column in The Sun

I had plenty of great friends and family come to see me in Kingston. With a cheeky chance to play Catan on my bed, for those who don’t know I’m a board game fiend. With seriously dedicated help from my favourite IFA and teacher plus their awesome girlfriends. Bradshaw actually moved all my stuff from Kingston to The Marsden.

But nothing could prepare me (or the ward) for the sheer number of visitors I had that weekend.
I wish I had started a guest book at the beginning just to keep track of who was there and when. Bizarrely I’ve had one of best weeks of my life since the diagnosis.

The Bristol boys firmly took over the day room, and on saturday the pub. Seeing my two favourite LMRFC probs surrounding my mum will always be in my mind. The C dog was allowed to stay overnight on the Friday night holding my hand!? reminding him there were no barriers between us this time.

The Marsden, for those who’ve not been isn’t like any other hospital I’ve been in, it’s better apart from the welcome. So I turned up to the Marsden on Friday 20/2/15 with Dave waiting outside . I got to the ward managing to slowly walk up, only to be told actually I need to register as a patient. Apparently the ward clerk doesn’t do this, so went off to registration, walking past a very elegant grand piano. The office itselfs a bit like an immigration office but to check that you’ve got every right to be here and receive treatment.

Then went to the ward to be clerked. The process of medical clerking is necessary but having now been a patient does seem rather repetitive but each doctor needs to double check the history and examination and depending on speciality will have their own specifics they want to wield from the process. So a very nice SHO came to see me went through everything and I swear at the end she enquired about any secrets I had, in a nonchalant very tactful way so tactful I can’t quote it directly. This isn’t a line of questioning I’ve ever used.  So I started to think have I missed all these secrets my patients wanted to tell me about, did the lady with chest pain I saw in A&E actually want to talk about her swiss bank account? However I have a feeling it may have sussed out key information in the past so if you’re reading this carry on. The SHO (senior house officer 3rd in rank)  attempted to stop my having a further blood test that day by digging out my results from the wedge from Kingston, but I think this was quickly batted down from above. Doctors, especially those who don’t need to take them, love blood tests, even though daily ones are more like watching paint dry as abnormalities don’t always change that quickly. Nevertheless since being in here and eagerly asking for my own blood tests results every day to be printed out I have fallen into that trap.

The SpR (Specialist Registrar – 2nd in rank) quickly came in afterwards with a quick repeat of the history and a touch on abdomen, my liver was still very sore as the SHO just had a go too. Went through the plan she’d thought the Prof would make .At the end she asked if she had any questions, my brother Matt turned to her and said “well yes I’ve got ten”. Dave, Paul and Matt had done a very thorough literature review in the last few days. The SpR survived the viva thanks to her impressive knowledge on the subject.

During this time the “symptom control” doctor turned up, I quote as this is how she introduced herself, it did appear to me that she was trying to use her right arm to block her badge with the words “palliative care doctor”. In fairness even though rationally I’m aware that palliative care doctors are one of the best for symptom control, irrationally the words scared the shit out of me. As the pain control nurse had fuelled me up well that morning I was looking and feeling rather good then, therefore she changed quite a bit around to avoid having to many different drugs.

The Prof (1st in rank) came an hour or two later and met us in the day room, and thankfully got straight to the point without poking me in my liver about which treatments they could offer me and their plan, at this time my Dad was contending with the electric chair. The plan was to get fresh tissue for sampling and this will be from a liver biopsy on Monday and in the mean time start treatment if I deteriorate.

A quick word, sorry mostly in medical speak, about just how great the Marsden is, all the nurses can cannulate/ABG HCAs can take blood. Only seen one agency nurse in ten days. Everything works bed side lights etc. apart from my syringe driver! They offer reflexology too –> more on this later. Food is with 3 courses for lunch and dinner, the crumble is particularly good.

I thought I’d split chronology with brief interludes to keep it fresh. So these stories are actually in the future, SPOILER ALERT

The (moderately) funny side of cancer:

hopefully you didn’t need to be there!

So as you’ll find out:

Firstly, my subcut syringe driver is in a plastic box similar to those waterproof disposable cameras you can get. On my birthday I was eager to get up and look sharp, so went showering for the first time without a relative. Asked a HCA to help me get my T-shirt off, handing her the driver. She then left the room and I got into the shower…. as expected… washed and dried. Went back to my bedside the driver was flashing and the battery was changed after 15 minutes it completely packed up. My nurse was in shock she’d spent most of the day before finding an available syringe driver. A “playful” blame game started when I told them I’d been in the shower with it, I did explain that it’s in a waterproof like box (Similar to those waterproof disposable cameras you can get.) they weren’t having any of it. It was the last in the hospital, due to my biopsy at midday I needed the pain relief, they had to get a taxi from Sutton around 9 miles away to get another one, thank god people pay their taxes.

On Tuesday a few of my old colleagues from Croydon were here as well as my brother, and some more friends. Not to name names but a friend and a huge fan of the ABG came in . After chatting for a while he noted that my hands were rather blue. I thought he may be lining me up for a bit more practice. But I compared them with my twins and they really were blue, brief panic, “P.E. P.E. P.E” rang in my head, but my hands were actually blue and not cyanotic. SW suggested we compare it with my feet. Was this a little known side effect of dabrafenib!?  Then someone pointed out that the bandage around my cannula (I’m not demented it’s the Marsden way apparently they don’t use tegaderms) was also blue. Then I looked down the bed linen was a shade bluer now, my new jogging bottoms my parents had got me for lounging around hospital were spreading cyanosis.

Last but by no means least, and definitely the darkest. So my Dad raced into the day room here on Burdett Coutts ward when the prof swooped in to see me on day one. All my relatives eyes were on the Prof and all the medics on me. Little did I know on the other side of a pretty small octagonal room, my Dad was having major chair issues, he’d side on the recliner chair which we didn’t know moved at the time, and he was slowly but surely being tipped forward while I was been given my prognosis and Dave frantically trying to help him find the control for the undomesticated chair. It was like Mr. Bean with a dark humour twist.

Other than close friends and family members all names have been omitted,
So I received the diagnosis on the Wednesday and things medially moved very quickly.
I was under the surgical team on call at Kingston and they made a token visit to my bedside every day, it was nice to talk to the consultant but both he and I knew that I was really under the CNS (clinical nurse specialist). However I do appreciate  for purposes of continuing care he didn’t ask his juniors to try and get my care taken over by another more appropriate team. Although not sure how long that would have lasted surgeons get bored after a while if there’s nothing to cut.

The CNS was relentless and one of the best NHS members of staff I’ve ever seen. I’m a hard man to please when it comes to specialist nurses who I sometimes feel are overly pious about their little niche and really will refuse to do anything outside their remit. She was exactly what the NHS needs someone who was caring, knowledgeable (she gets involved in writing NICE guidelines ) and most importantly proactive. She impressed because of speed of referral and how quickly she came to see me. Before seeing me she had already organised an outpatient appointment for me at the Royal Marsden under a Prof. Then I told her that actually I was seen regularly at  Guy’s by the next morning, she must’ve got in very early to get enough information over for their MDM (read: melanoma meeting with lots of specialists sat around discussing each case) that morning, as their only once weekly affairs. As Guy’s stalled a little bit, she then changed tact went back to the Marsden and got me admitted on Friday under the aforementioned Prof. She also sourced my notes from Bristol and Leicester and the tissue from the cancer I had 10 years ago, from a hospital which is now closed (Frenchay)… I am in awe of her.

The ward itself Alexandra were absolutely lovely, starting the long procession  of hugs I’ve got, and gave me a private room presumably to help with coming to terms with the news.

Lastly, there was my pain control nurse. A lady who wanted to try everything quickly and actually by Friday had got me on a very good regimen, starting with a PCA switching to patch, pregabalin and parecoxib*.

By the time I got to the Royal Marsden the pain was pretty much under control and treatment was about to begin. I was asked by a friend if I was “blue lighted” over, actually the two gents who took me over let me stop and by a sandwich for lunch!

*I’d not heard of it either. selective cox 2 inhibitor.

Hi all,

I’ve only blogged previously on two of my epic traveling trips, in Europe and in NZ and they were both collective efforts, so here goes.

Firstly it was poignant how many blogs must have been made in peoples plights against this awful disease, after many variations finally the website allowed me to have wrestlingmelanoma. Even battlingmelanoma and Iwanttoliveforeverordietrying2 were taken.

For those who don’t know me, I’m a 27 year old Doctor who has just started the fight against metastatic melanoma, the story is also on my justgiving page.
https://www.justgiving.com/Mark-Sims5/
My life has changed inconceivably in the last week, I woke up on Wednesday morning in severe pain and went to my GP, prior to that and only really in hindsight I had a dry cough, very occasional 2/10 abdominal pain on my right side and a mild loss of appetite. I put these symptoms down to viral cough (even went to my GP), thought that I may have gallstones. I don’t want to fear anyone who is a GP into referring every 27 year old with those symptoms to a specialist as the health service would crumble and a lot of people would get unnecessary tests . However I presented with severe 8/10 abdominal pain on Wednesday, via my gp, to A&E at Kingston. Even then being a doctor I refused just to rock up to A&E, even though I could barely walk at this point.

Kingston hospital was absolutely fantastic, I was seen quickly seen by an A&E consultant who used his A&E US to look at my gallbladder and it looked a bit weird with a raised CRP. So at that time, the diagnosis the the GP and I thought I had, acute cholecystitis was most likely. Things quickly went downhill I had a chest XR which the CT2 in general surgery who was clerking me in told me wasn’t normal. I got my friend Matt to look as well because he’s a very competent doctor and also would always  be honest with me.

I then promptly went for an ultrasound scan of my gallbladder and abdomen to look for gallstones. This was a disaster the radiologist’s face looked bleaker and bleaker throughout the scan, I directly questioned her about why she looked that way but kept repeating that I needed a CT – she was right. I had the CT pretty instantly as you can count on radiologists to get scans faster than anyone else.

I was then met on the ward at around 1715 by the clerking doctor and a specialist skin care nurse. This was frightening because I knew my worst nightmare had happened, I had a thick melanoma on my scalp almost 12 years ago, and only if this had spread would she be stood there. The worst was told to me I have tumours in my spleen, liver and lung. The specialist skin care nurse was fantastic, the CT2 was great explaining as much as he could to my friends and family.

Then the flocking of guests began. My family and friends came together and things were never to be the same again.

I’m getting dabrafenib which is a selective inhibitor of melanoma, it’s slight guesswork until I get the full biopsy result but it’s reasonably likely the tumour has the right receptor (BRAF +ve) so the melanoma may regress and definitely suppress with this treatment.
So prognosis wise they/I think I’ve got about 4 months if they do nothing. If I’m BRAF positive this should add around 18 months, but this crucially gives me time to take another treatment called ipilimumab an immunotherapy which for around 20% of patients see very dramatic reduction in disease however it takes around 4-6 months to start working hence the other treatment first. So it’s not great but there’s a decent chunk of hope. Furthermore the longer I tick over the more drug trials could come up new drug for melanoma are being tested all the time
I’m going to live forever or die trying.