Bad news. As I prefer it this way I’m cutting straight to the point.
Melanoma is in my brain. I had a routine MRI head on Wednesday which was organised by my team to check that I was ok to go to South Africa this week. The lesions are very small, which is how they avoided the CT head scan I had in Kingston, but they are there. I have cancer of my most important organ. The question now is when did they get there, were they there from the beginning or is it new. If it’s new, this means Dabrafenib is no longer working and I’ll urgently need to start immunotherapy. If it’s from the beginning, which is most likely as I’ve now had a repeat CT head which was again normal, it’s still a disaster, but less bad, as the Dabrafenib is probably working on these lesions and therefore the disease is stable. MRI is more sensitive for CT so CT could have missed them. There’s possible shrinkage in other areas so Dabrafenib is definitely working from the neck down. I’m having a repeat MRI head in a few weeks to find out, then I’ll stay on Dabrafenib if the disease is stable. This news comes with further negatives, firstly I have to surrender my driving licence due to increased risk of seizures , and I’m under strict orders not to fly. The no fly zone around me is imposed because if these lesions are doing something I need to be close to the Marsden, secondly I have an increased risk of intracranial haemorrhage (a bleed in my brain) and seizures. I guess if turns out to be what we now hope for, at least I had months of blissful ignorance, where I happily got on a plane and drove a scooter.
This week has been hell. Melanoma is a cruel cruel C, it seems to strike me in ways I least expect and it somehow managed to lie there in plain sight. It’s crafty and secretive. This week as you know had been a very positive one indeed, even the Daily Mail managed to write a nice positive article about me and the NHS. I found out the news on Thursday, the clinical fellow who I’ve seen regularly, rang me about 11am. I’d just got back from my interview on Leicester A&E and had been accepted to work there for two days a week, I wanted the job as it’s literally next door to Georgie’s house, I could do with a bit of cash, and it would be a bit of routine work. I’d got to a point in this hideous affair where I was feeling quite settled and longed for a bit of … normal. I even practiced with both Dave and Georgie for the interview, although I’d heard most A&E interviews are a farce, basically it’s do you have a medical degree? do you speak English? Within what seemed about thirty seconds, into my introductory spiel, the consultant had turned to the A&E manager and said to give him some shifts. At around 10.30 I called my parents they were ecstatic. It was a chance for me to keep up being a doctor without much stress.
11am… the call. The Australian accent down the phone, I knew it was bad news. There was a pause my line was bad and I gave them Georgie’s number to phone back. Ring I answered, Still she said a bit more stalled, “I know it’s bad news” I said. A little more words, she’s clearly at practiced the right way to give bad news, but there’s never a right way, I knew it was bad. I swore I think. We cried a lot. She mentioned repeating the CT. I phoned Mum and Dad back, the illusion was over, the big C has taken my normal life. I didn’t know what to do, I was waiting on their plan, I phoned back and left a message and said I’d be up for a scan ASAP. Georgie and I dropping everything, Mum, Dad and Dave all diverting their journeys straight to the Royal Marsden. We played Charades on the train; a welcome distraction. Met Dave at St Pancras and went. On the Piccadilly line we bumped into a Psychiatrist that I was under as a medical student, he asked me why I remembered him, he asked if it was either because I was really good or really bad teacher. I replied it was because he was good, remarking that I wouldn’t have bothered to say hi if it was the latter. I told him I was off to the Marsden, he told me he’d pray for me. Just as we left the train he told me in islam if you pray in return it’s more likely to be heard. The CT was performed, I’m usually very affable to the staff, but I literally couldn’t say anything without getting upset. After the CT at 5.10pm I got word the Prof. wanted to see me. He’d got his best melanoma radiologist on the case to report the scans as soon as possible. As a junior doctor who’s fought radiologists to allow their patients anywhere near a scanner, it is enviable to have that much influence, but as a medical director you’re everyone’s boss. He saw me at 5.25pm along with my Cancer Nurse Specialist, they weren’t getting paid a single pence for it. It was exceptional service and it helped me understand the situation. I got the impression that they’d begun to think I just might pull off this miracle. Having brain mets makes this already exceptionally difficult task even harder. The issue is the blood brain barrier, which splits the brain off from the rest of the body. There was a suggestion that the new therapies had poor penetration through this barrier, i.e. the lesions would be unable to be affected. The Prof. is reasonably hopeful that this isn’t the case especially for the more effective Pembrolizumab. This has been corroborated by the trademark extensive literature review by all my family. It is likely that the proteins don’t cross into the brain but they are able to switch the immune system back on and the White Blood Cells (in this case T-Cells) are able to cross the barrier and fight the cancer once more. It’s likely Dabrafenib as a small molecule does cross the barrier but it’s questionable how much. Unfortunately drug trials can exclude those with brain mets from them so this is another issue. Furthermore I was told I couldn’t drive and couldn’t fly and won’t be able to go on Safari.
So that’s it really. I was completely deflated; having been buoyed up by all the CRUK work, and being listed as a “Major Contributor” in their annual review. Two weeks ago I said to myself “I feel fine, well better than fine” I was really really enjoying life. As Dabrafenib crept through the “median time” I was feeling invincible once more. It is a massive set back and what’s worse it was so unexpected. I did have a slight headache for about a week, which I was going to mention to the RMH after going for an overdue eyetest on Thursday of all days. I’ve had pains over my left eye on and off for years and it’s usually because of my astigmatism in my left eye. Whether this is relevant we’ll find out, it was my understanding as my bloods were normal implying the big C wasn’t doing anything and all of my body lesions were either shrinking or stable that it wouldn’t be able to spread. This is hopefully the case and they were there all along. Nevertheless, the bad news I thought would get at some point was to be told the big C was Dabrafenib insensitive, I’d planned which trial I’d go for; and if I wasn’t eligible I knew my plan B too. Since Thursday I’ve been in hiding, I’ve told only a few people, I’m very uncertain about my future and how much to plan. I try to end each blog positively but I’m not sure how. That night I prayed back.
The title of this blog is from a weird medical mnemonic I was told by a doctor when I was a second year medical student. It was so odd it has been stored in my long term memory, it’s a way of remembering which cancers spread to the brain. Breast, bladder, lung, kidney, colon, and melanoma.
Wrestling Melanoma 
Dear Mark,
You don’t know me, but my sister knows your girlfriend, and this is how I came to know of your story. You are a true inspiration, and to say that you are undeserving of this awful disease- well to call it an understatement would be putting it mildly. I have been so moved by your story, and I am so sorry for your most recent news. The one thing that has remained so clear to me whilst reading through your entire blog, however, is how much of a fighter you are. You are so strong, and I hope that your strength and determination remains unwavering, even in light of this shocking and cruel turn of events. I believe in you, and have not lost hope or faith, and know that you will continue to fight as hard as you can.
You and your family and friends are in my thoughts and prayers,
Nina
LikeLike
I don’t know you, but I stumbled on your blog and read it from start to finish in one sitting. You are a wonderful human being, very inspiring, please keep fighting and I do believe in you.
LikeLike
Hello, I imagine you won’t remember but I tweeted you a while ago as I follow your blog regularly. My husband also has stage IV and it’s one hell of a challenge sometimes. Just wanted to say I’m sorry to hear your news. It must be awful to hear when you’ve been doing so well and shit that it’s ruined your plans. You’re very brave and a source of inspiration, reassurance and information for me while I try to support Mike. I’m not a pray-er but I will be hoping hard for you. Sorry – this was always going to feel inadequate once written down! – but keep going, you’re doing yourself proud x
LikeLike
You don’t realise how much your words mean to me. I’m having a good day at the moment helped by all the comments and support I’ve had over the last couple of days. Then taken back from the abyss by my girlfriend and family over the days preceeding that. It’s nice to know I’m giving you some reassurance. It helps me keep going. If there’s any specific questions about his care you would like to know I may be able to help.
Cheers
Mark
LikeLike
A good day is to be grasped with both hands! That’s really kind of you to offer – I’ll bear it in mind – I get so much info from the blog! He’s waiting for a scan to see if the dab/tram has stopped working but we are trying to be hopeful. He may also need a bowel resection but is still going to work daily coz he’s a stubborn bastard (seems to be the way you guys go when the tough gets going!). Just to make sure I’m not having it easy I’ve got an exam tomorrow (hence I’m writing loads here as a distraction!) I hope you continue to feel well and relatively upbeat – sounds like you have the best people around you (personally and medically). Stay away from that abyss if you can – it’s horrible if you let yourself too near the edge. All the best, Anna x
LikeLike
Dear Mark, I have your read your blog and I am sorry to hear it the cancer has now metastasised to the brain. I am a long term survivor of terminal cancer, a chartered physiotherapist and I have been completely free of cancer now for 16 years after having a less than 3% chance of surviving 5 years (and a 0% chance for 10 years). The answer to me was in combining treatments, not just conventional but using other novel integrative approaches as cancer is an immensely complex disease that cannot be targeted in just one way (eg immunotherapy). Eventually the cancer will mutate and circumnavigate this in due course so it needs to be attacked in many ways including a metabolic level. ie A multi-pronged approach using effective combinations that not only attack the growth factors but the fuel the cancer uses. I used both conventional and complementary but I also went down a ‘middle’ path using old cheap off label drugs like metformin and statins and Cox 2 inhibitors like Lodine (which can have GI issues) and dipyridamole (persantin) amongst others. Dipyridamole I have always felt should be used more with melanoma and I used it successfully myself to enhance the treatment I was on. I have lots of interesting information on several of these ‘repurposed’ ‘dirty’ drugs (drugs which have an effect on multiple areas) on my facebook page Jane McLelland Off Label Drugs for cancer and excitingly there is a clinic in Harley Street studying a combination of four drugs that can be used alongside your Dabrefenib. They have already had many patients get outstanding results with stage 4 with complete regressions of brain mets and it has only really been up and running for a few months! This is a completely new approach for many (but not to me!). I now have nearly 300 in my group, many of them are now on this drug combination or something similar and the results coming back are incredible. I would love to have you join us and discover if it could help you too. I am pretty confident it would.
https://www.facebook.com/groups/off.label.drugsforcancer/
Jane x
LikeLike
Hi Jane thanks for getting in touch, I’ve had a look at the research for some of the things that you’ve suggested, for melanoma. Which cancer did you have? Mark x
LikeLike
Hi Mark,
I had cervical which spread to my lungs. Cervical may be more related to melanoma than you think as both may be triggered by the HPV virus (alongside other different epigenetic factors).
The use of these old repurposed drugs work on targeting the fuel a cancer uses, ie a metabolic approach rather than stopping the DNA replicating (chemo, immunotherapies). Sadly these DNA approaches are doomed to fail eventually as they do not target stem cells and the cancer eventually mutates coming back more aggressive and harder to treat. All cancers use glucose (and later glutamine) and these drugs work on many levels as well as targeting the fuel. Eventually the cancer dies and it even better it also works on the stem cells. Hooray! The sooner you start adding these alongside your immunotherapy drugs the better!
All cancers have the same need for glucose so it works for every type of cancer. Yes some melanomas seem to behave a little differently, but it is the combination of drugs that is important. There is some possibility that certain types of melanoma may not respond as well to metformin on its own but it is the combination of drugs that is important, not just using one on its own. Combined, the effects of these drugs are magnified many times to become very powerful.
Diabetics who take metformin and who also take statins have a 80% reduced risk of cancer. This is phenomenal when you consider diabetics have a 30% increased risk of cancer!
There is a little mention of me in this article
http://www.dailymail.co.uk/health/article-3115964/Could-simple-antibiotic-help-fight-cancer-Experts-London-clinic-believe-cheap-everyday-drugs-starve-deadly-tumours.html
This is a new study and I now have nearly 300 followers on my goup facebook site, many of them on this new protocol. It is very exciting to watch the results!
http://www.facebook.com/groups/off.label.drugsforcancer
I would be very happy to meet up and chat through other contacts that might be useful for you. I am in SW London.
From one warrior to another! I fought and won. Here to help Jxx
LikeLike
Hi Jane I’ve taken a long time to reply, I’ve looked at the literature and I agree there probably is some anti cancer activity in most of the drugs you’ve mentioned at least in the lab. Metformin for example seems to have some anti melanoma activity in certain types but the authors of the particular article I found felt it could be unhelpful in other types. I’m going to discuss it with my oncologist but as long as the MRI head shows stable disease I’ll be inclined to stick to the standard therapy at the moment. I’m not against going off , I’m currently taking aspirin as it is proposed to reduce platelet binding to the tumours and allow white blood cells to infiltrate once more. But thanks for sharing it was genuine food for thought.
Mark
LikeLike
Also to say they are getting remissions of brain mets. I have several on my site who can attest to this! Not telling you what to do but suggest you give the clinic a call…
I also have a couple of people with melanoma on my group facebook page xx
LikeLike
Mark – a more technical article for you to look at if it helps. I hope you have an understanding oncologist who will help you with this. You can always change. Do not feel disloyal, it is important to find a doctor who collaborates not dictates.
http://www.oncology-central.com/2015/07/30/targeting-metabolic-pathways-why-are-we-missing-a-trick-in-cancer-treatment/
LikeLike
Hello Mark your blog and fund raising is helpful and inspiring.It has encouraged me to plan to raise money for CRUK.I saw you on London News and it got to me.I had DFSP skin cancer and since seeing you on TV and reading your blog I am determined to raise money. I do pray so you are in my prayers.
LikeLike