Of Science

“”I’m sorry, herbal medicine, Oh, herbal medicine’s been around for thousands of years!” Indeed it has, and then we tested it all, and the stuff that worked became ‘medicine’. And the rest of it is just a nice bowl of soup and some potpourri, so knock yourselves out.” (Dara O’Briain)  ‘ 

 
Dabrafenib Dabrafenib Dabrafenib a wonderful drug. The MRI head last week showed stable disease. So the implication is that the lesions there have been there the whole time, and therefore Dabrafenib has been breaching the blood brain barrier and keeping the cancer in check. How big the lesions were originally in my head is a worrying thought but my brain is left unscathed and no problems with how it functions (although I’m sure my friends would say otherwise). What’s interesting is Dabrafenib is the only drug of it’s type (BRAF inhibitor) that breaches this barrier. Although in animal studies suggested that it wouldn’t work, not only does it have a better side effect profile than Vemurafenib but in humans crucially in gets through the barrier. Many many many chemotherapy drugs do not do this. I have therefore come to one humbling humbling conclusion I am on the only drug that would have saved my life and kept it going, and that was only approved by NICE in September 2014. We will never know if I had Stage 4 melanoma back in September 2014 nor if I had brain metastases. But for arguements sake if I had presented in August 2014 only half a year earlier like I presented in Feb. I wouldn’t have been eligible for the Dabrafenib trials as cerebral metastasis would have excluded me from the trial. I would have been prescribed Vemurafenib and it wouldn’t have worked, and then I’d have only had ipilumumab to use which takes a long time to have an effect if at all, and I would have got sicker and sicker throughout that time. To put it simply good solid research is essential. The story of these drugs is fascinating and takes on good scientific prinicple, lots of drugs never make it for a number of reasons (e.g. an idiosyncratic hideous side efffect) and loads of patients are given these drugs many which would have perished because they didn’t work or because of the side effects. Actually to forget that is not only insulting to all the scientists who worked damn hard to get there, but much more importantly it soils the memory of all the patients who gave up their lives so I could survive.

 
This leads on to my next point. I by no means want to come across ungrateful, I hope you all realise that I love all the positive comments, I check my Justgiving page at least twice a day so I’ve read every message at least thrice if not more. When I’ve been in Newspapers I look at the comment sections too, and most recently as a picture of Magnus and I was posted on the CRUK facebook page it was filled with “likes” and many good comments. But the rogue comments really piss me off, because of my previous point. Comments like “The cure is out there”, “Why don’t the elite suffer from cancer”, “animal testing doesn’t work”, “They know the cure” along with arange of alternative remedies. The problem is I’d argue that those who just want to help are helping to propagate the dishonesty and the propaganda from those who want to make money. Those who are antiscience, e.g. animal rights protestors, either knowingly or unknowlingly would prefer that I was dead. Testing on animals is a necessary evil, and animal rights protestors, if you’re reading this, it would be much more progressive for you to raise money for alternatives to using animals in trials, not sabotaging others research or writing offensive comments on Facebook.

 
I’m sure every doctor has a story like this, because it’s so bloody frustrating, but on a surgical ward round one of our patients had been admitted for pain control. The patient was a 44 year old man with advanced bowel cancer, he’d convinced himself not to go the traditional route and had bought a strange chemical and some herbs off the internet. Thinking he could beat it himself by staying fit and medical science was wrong. By the time I saw him he’d been fighting it his way for nine months, he was losing badly, but he kept his resolve. Desite now nearing death’s door he still believed in it, somehow he was still dragging himself to the gym every day. He’d seen so much information on the internet he just couldn’t comprehend that it was all crap. Please, as a representative for medical science, see us first complementary therapy is just that, it’s not alternative. Although I’m not sure what happened to this gentleman I’m sure it wasn’t good and it’s likely he’s left his wife and children behind.

I’ve had countless of suggestions for homeopathy, turmeric and hemp oil. The last sounds like fun, although I wonder how much THC (the active chemical in cannabis) is actually in it. Most recently I have been messaged about “off-label” uses for common drugs. This is a little bit more interesting and the first drug which grabbed my attention was metformin. Having actually studied metformin during my Intercalated BSc. I was coating rat heart cells in it before simulating a heart attack, and it was protective, which is encourgaging because diabetic patients that are at greater risk of heart attack. However what happens in the lab far from what will happen in the human body, so you can take that with a pinch of salt. So I found an article about metformin and melanoma, and in their conclusion it could be beneficial for melanomas with specific genes but could be detrimental to others. Again this was just in the lab. What would happen in the body is anyone’s guess really. If you poured water on cancer cells in a petri dish, they’d all die, it doesn’t mean I should drown myself. Again it is helpful being a doctor and one who’s done some research as I’m able to try and make the conclusions myself. I did take aspirin for a while, until I thought perhaps this would increase the chance of one of my brain lesions bleeding so I abruptly stopped. No harm was done as the MRI head showed.

 
Miracles do happen in medicine, and I would argue that we should remain scientific about it as opposed to just assuming it’s a special diet or something else that has changed or a god in whatever form. It is telling to think actually I kept the melanoma at bay for 11.5 half years throughout medical school where on many occasions I drank heavily and lived off cheese toasties. Maybe the large volume of alcohol after a binge killed off the melanoma cells. That we will never know, but I guess probably not. It’s important to note that miracles did happen before this renaissance in melanoma treatment that we are seeing now. As a tiny minority of melanoma stage 4 patients (76 apparently)^ their cancers just spontaneously regressed. Actually 25% of patients saw some degree of disease regression*. At the time this was thought to be due to the immune system (T-Cells) and is from my understanding why immunotherapies were tested first in melanoma and probably because the patients had no choice. But the scientific way of thinking about this is why did the disease regress, how can we get it to completely regress in the patients where it has a bit, and how can we stimulate regression in every patient. This is a much more helpful way than assuming it’s god or a pill. The regression could have started when the patient was taking hemp oil/tumeric/homeopathy (delete as applicatble) and it could be assumed that was the cause, as opposed to finding out what actually happened (which is what they did). Also if it was god or something else then how do we “play god” and copy what they did in the lucky 76. If it was god, then perhaps they were giving the scientists a sign on how to help everyone else. So the cure is out there and some patients are getting great responses with immunotherapy we just need to work out how to improve that for every patient.

 
The advice is good and keep sending it, some has been genuine food for thought. Please don’t stop praying for me; a divine intervention would be very nice right now. What I am trying to say is the problem with unlicensed treatments is that they may have unintended consequences for example with me taking aspirin. If the time comes when I’ve exhausted conventional treatment I’ll consider my options. But please think about it before you send it to other cancer sufferers. Some may end up giving up on evidenced based medicine altogether and that will cost lives. After all science is giving me my Dabrafamiracle; lets keep funding it to produce more.
For more information about homeopathy please watch this YouTube video: https://m.youtube.com/watch?v=HMGIbOGu8q0
^http://jnci.oxfordjournals.org/content/93/14/1047.full
*for once I feel like a reference is necessary http://jnci.oxfordjournals.org/content/93/14/1047.full

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13 thoughts on “Of Science

  1. Hi again Mark

    Glad it seems you’re still doing well. And thanks for another really interesting blog.

    You’ve offered to help me (and my husband) before with deciphering some of the more technical medical information. We are now expecting a move to ipilimumab and I was wondering if you could simplify the information – specifically about response rate, side effects and life extension but also anything else you think is important. We are quite open to the possibility this won’t be overwhelmingly positive so dont worry about alarming us!

    If you don’t have time I understand so please don’t feel obliged.

    Oh and Well done on your run! An impressive achievement by anyone’s standards – I’m perfectly well but consider running for the bus exceptional.

    Best wishes as ever

    Anna x

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    1. Hey no that’s fine, how long was he on dabrafenib and trametinib? Well ipilimumab isn’t great, as I think you’re well aware. As far as I’m aware it works in 8-15% patients, and the side effects are probably worse than trametinib and dabrafenib with gastrointestinal problems and breathing problems. But nevertheless still better tolerated than traditional chemotherapy. Although I don’t know how many but some patients do fantastically well. My brother’s now wife aunty actually had ipilimumab as part of a trial and from what I understand (she’s a private person) has been going for four years since. So it’s definitely worth a punt. Annoyingly Nice have yet to make their decision about being given pembrolizumab first. Which works in a much larger number of patients.
      Cheers
      Mark

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      1. Hi Mark

        He’s been on dab/tram since March but recently had to have surgery on his bowel coz it had treated his lungs well but got worse in his abdomen. He’s recovering well and been told he will need to change. We are annoyed about the pembro too – I think it’s still waiting for a decision here in Wales anyway!

        Thanks for the iPi info – good to hear about your aunty in law at least. We didn’t think it sounded like a fun experience but it’s worth a roll of the dice. If you’re interested I’ll keep you posted. Hope the dab/tram lasts longer for you.

        All the best

        Anna x

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      2. It already has lasted longer, which is very fortunate. How old is your husband? Have you discussed with your oncologist the point they will switch to Pembro? The Marsden have told me they would give me two doses (it’s a four dose course) and if there was no response to switch. It would be preferable to change ASAP, as immunotherapies are thought to work better when the disease is at bay.

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  2. hi Mark

    I’m really pleased for you – here’s hoping it continues for you.

    Mike is 37 and it’s not at bay at the moment sadly. I think pembro approval is still pending in Wales but I’ll ask the onc and if it is (or becomes) an option maybe mention what your doc suggested if you don’t mind?

    We should know a bit more next week as we’ve only had an update from our specialist nurse at the mo. To be fair your doctor has always been a bit more responsive than ours has been – we had to wait 4 weeks for a CT once Mike started having new symptoms!

    Thanks again for your support

    Anna

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    1. Four weeks, that’s absurd. Yeah please do, my consultant is Professor Gore if they ask. I’m actually having just Dabrafenib, as they were unable to source any Trametinib for me either on a compassionate basis or for a fee, there’s a manufacturing problem. I’m not sure how feasible it is but I’d highly recommend the care I’ve got at the Royal Marsden. I realise it’s not that close to Wales.

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  3. Hi Mark, great blogging as usual. Love reading your thoughts and you articulate the scientific facts so well too. My Dad has loco regional MM – we all read your blog regularly. Your positivity always shines through, truly inspirational. Keep up the good work, always rooting for you. Long may your Dabrafamiracle continue! Rosie x

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  4. Hello mark, glad to hear your updates and i continue to pray for you. You are right about unscientific interventions and animal rights activists (people, eat, hunt animals and governments cull them occasionally, they do no service to their cause by focusing on animals in medical research!). I was humbled to read that you have an open mind about divine intervention and would like to tell you about something I tried whilst in a similar situation to you that I believe worked for me… In my hour of despair, I bowed down and said out loud, God if you exist, if you help me, I promise to sincerely study every religion out there and seek the truth about you and follow it.

    Miraculous things happened for me, although I cannot prove that but I just thought I would share. Best wishes.

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  5. Hi Mark I really find your blog interesting.I was advised to try all sorts to cure me,fried tomatoes was an amusing one but to this day I can’t fry a tomato without thinking about its special powers.I believe the medical profession and the advancement in science have prolonged my life. I am not saying that the rest is worthless because I do believe in God.But I am amazed at how the medics managed to fill a huge whole in my chest with part of my stomach including the blood supply.It’s incredible!…Hoping that your health remains stable.

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    1. Hi Pat, thanks for getting in touch glad you’ve read it. Did you have cancer then? I’m not sure that you need to make this disclosure to be honest. At the risk of sounding too opinionated it really doesn’t matter what people’s opinions are when it comes to science. There’s many conspiracy theories and disbelievers of man made climate change, only 40% of Americans believe that it is happening, but 98% of climate scientists do. In 50 years time we both know the latter group will be correct. After all science is the brutal process of being correct, however inconvenient the result. Mark

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