The Perks Of Pembrolizumab

Last week it was reported that two scientists behind groundbreaking Immunotherapy developments had won the annual Nobel Prize for Physiology or Medicine for their work on Immunotherapy.

This is big (and incredible) news within the cancer world! It got me thinking about all the positives which come alongside taking a newer, cleaner drug like Pembrolizumab. I’m continuing on treatment indefinitely which is hard to get my head around, but It’s safe to say I wouldn’t be alive without it! I just have to suck it up and keep on going.

Professor James Allison and Professor Tasuku Honjo discovered how to fight cancer using the body’s own immunise system, which eventually led to treatments for advance melanoma and has transformed the way it’s treated. My current Immunotherapy drug Pembrolizumab is now also being used to treat other cancers such as advanced lung cancer and Hodgkins Lymphoma. The drugs now offers hope to patients like me with previously untreatable cancer! Believe it or not the duos work began in the 1990s and is now starting to pay dividends!

You can read more about the award and the developments in the news section of the Cancer Research UK website, which also includes a few quotes from yours truly! Thanks CRUK!

I’m so happy that research in the area has been funded so far, but my case is one of many, some not as successful! Hopefully research will continue so scientists can fully understand why drugs work for some people and not others and how it can developed to become even more successful.

Ipilimumab (aka Yervoy), which I took a few years ago was one of the first drugs developed using the scientists discovery, with Pembrolizumab and Nivolumab following closely behind.

I started thinking about all the perks of taking this drug compared to some of my previous treatments. Going through endless cycles treatment is like crossing a battlefield every day. I need to keep thinking about the positive aspects to help keep a positive mindset, and it might help someone else too!

My hair and eyebrows have grown back since my treatment change, for me this is a huge success! I ask look well (partly thanks to the hair and eyebrows!) therefore not like your typical cancer patient; this does wonders for my mental health, but I know often people don’t always appreciate how unwell I am if they can’t see the evidence for themselves.

The side effects for me have been a lot less than on previous systemic treatments, including Vemurafenib which caused me many more problems such as frequent vomiting, skin rashes, bad stomach, headaches and joint pains to name a few. I will sometimes still experience these side effects, but to a much lesser degree than previously. My current main side effects are fatigue and vitiligo, and although these get me down frequently, (see my previous post Tired of Being Tired) I know I’ve come really far over the past two and a half years.

The infusion of the chemo itself is only 30 minutes, I know some people end up hooked up to machines for the best part of a working day receiving other types of chemotherapy. On a really really good day I might only be physically hooked up to a drip stand for a hour or so. Sure, that hour feels like an eternity, and there’s an awful lot of waiting around in between appointments etc, but it could be much worse. Today I had a really long day at the hospital, but I have to remind myself it’s all for the greater good!

Some weeks, when not seeing my consultant or one of my oncology team I only have to visit my hospital for the treatment in the afternoon, making the whole experience far less pain staking!

I’ve spent much less time as an inpatient on a hospital ward that with previous treatments. Three years ago it felt like I was constantly visiting my local A&E due to various side effects and having numerous blood transfusions, but so far so good with Pembrolizumab.

I hope that in the future this drug will be developed into a tablet, meaning a lot less visits to hospital for patients like me, considering how advanced chemotherapy treatments are becoming I would it’s not too much of a distant dream. Until then I just have to grit my teeth and keep going.

Cognitive Behavioural Therapy

I recently came to the end of a counselling programme which focussed the talking therapy Cognitive Behavioural Therapy (CBT) to help me manage my depression and anxiety. I wrote about starting this journey in an earlier blog post, The Rough And The Smooth a few months ago.

I was initially referred for this treatment at the end of 2017 and I have been attending regular CBT sessions since April in order to help me manage my emotions and thoughts around my cancer diagnosis. It’s not easy to rewire your brain to think in a completely different way, but it’s helped me a lot, and I’m hoping I’ll be able to continue using the techniques I’ve learnt so that I don’t fall back into a negative thought cycle.

Over the past few sessions I’ve practiced various different techniques used in CBT,  one I’ve found particularly useful so far is Thought Challenging. This technique allows a person to look at a situation from alternative angles. By doing this I’ve started to consider things from a more objective point of view, rather than just assuming that my negative thoughts are the complete facts, so not necessarily about just thinking positively in a negative situation, which is often a particular challenge!

A simple example of this may start with a friend cancelling dinner because they’re busy at work. My irrational brain tells me that I am not important enough and worry they think I am boring or I’m constantly talking about my cancer diagnosis or my own issues, therefore I am not a good enough friend to them and they don’t want to see me. So many thoughts run through my mind about the reasons why they cancelled. Keeping a Thought Challenging diary has allowed me to weigh up the for an against and come up with an alternative thought. Now I can be more rational and recognising we’re all busy people, particularly when work comes into play. In the grand scheme of life its simple to reschedule for another time. It’s key for me to remember I am important and that I am lucky to have a lot of people around me who are always there to listen no matter what, even though some live thousands of miles away!

Through this process I’ve learnt that I tend to think in a very black and white way, (know as All-or-nothing thinking) which has had a significant negative impact on my self-esteem, happiness and relationships over the past few years. I’ve tried to overcome this by keeping a list of my negative thoughts and writing down different ones. I have to remind myself that this thought is extreme and in turn come up with one that is more balanced. Another example would be me calling someone and them not picking up the phone; I’ll start to panic that something really bad has happened to them, even though they’re probably just busy at that time. Similarly, if someone says they need to go to the doctors my mind will automatically worry they might have a serious health problem and I constantly fear awful things will happen to my loved ones

During my life with cancer I’ve been taking everything one step (or one PET CT scan) at a time. I’m often surprised I’ve not had a breakdown over the last eight years. Sometimes I get emotional and feel like I’m in full on mid-life crisis mode (I am now in my 30s after all) so CBT has been a great way to try and combat that! I’ve yet to try and revisit my youth, or buy a sports car,  so perhaps I’ve not had a my own crisis moment just yet! I always feel like cancer means ‘I can’t’ do things and there are so many other things ‘I should’ be doing. Thinking in this was is unrealistic and therefore I put too much pressure on myself.

Staying alive is on the top of my priority list, and despite all the challenges that have come my way I’ve succeeded so far. Although difficult at first, CBT has been a lifeline as it has helped me find was of copying with all the negativity my illness throws at me. I am now waiting for a referral for another type of counselling that I hope will help me move forward further. In my last CBT session I wrote down my future goals for the short, medium and long term and I’ll need to keep looking back at it to make sure I’m following my own advice. My first goal over the next six week is to try and maintain a more positive outlook, my recent promising PET CT scan results have been a huge factor, so here goes…

The Results Are In

I have now been sharing my story via my blog for almost two years, and luckily in that time have also remained stable on my latest Immunotherapy drug, having had my last major surgery in the summer of 2016.

This week is also very significant as it marks exactly 13 years since I was initially diagnosed with stage 1 malignant melanoma via a mole on my neck when I was only 18 years old. I have now been living as a stage 4 patient for almost 8 years. I was told back then I may not make 25 and now I’m 31, struggling sometimes but I keep picking myself up again. Cancer has been with me my whole adult life, which is something I don’t think I’ll ever be able to accept.

In some ways my stage 4 diagnosis seems like a lifetime ago, but in others not much had changed. Not long after I had started recovery from surgery to remove my brain tumour and lung tumour I moved to London ana went back to work. I’m still living with friends in the capital city and attempting to navigate the working world as best I can. Around three years ago I moved form South West to East London, so it almost feels like London is a new city, having discovered parts I would never have seen before.

I still get too caught up in the moments when I feel well and then book in too many activities, so last weekend I spent a lot of time relaxing and napping in preparation for the week ahead. I had a chest infection and needed antibiotics, which I think have since cleared everything up. I need to be on good form for the Northampton Half Marathon on Sunday to raise funds for The Lewis Foundation.

I had a PET CT Scan last week and travelled to Leicester to get the results yesterday. I am delighted to say my news was all very positive and takes the pressure off over the next few months.

However, no matter how many times I’ve heard positive news over the last two years there is always the fear my world will fall apart again at any moment. In some ways it feels like I’ve been given a golden ticket, but tomorrow I could find out it’s actually fake after all. I am of course relived, but the fear doesn’t disappear over night.

I’m now very used to the three weekly routine and cycle of my treatment, in way it has become staple part of my life up until this point. Travelling to and from the hospital gets me down, it’s mentally stressful and physically exhausting, but it’s nothing if it means I have a functioning life the rest of the time. I need to try and shift my attitude so that I am ‘living with’ cancer rather than all the negatively that plagues me about dying from it.

Here’s to LIVING!

Read All About It

A quick blog post to update people on my latest media venture.

A little earlier in the year I was interviewed for Mail On Sunday’s YOU Magazine, and the article comes out this Sunday (22 July).

The piece focusses on my story, talking about my cancer experience so far and how my family and friends have helped me navigate through the toughest journey of my life.

I hope it helps to raise further awareness of what it is like to live with stage 4 cancer, and all the ups and downs that come alongside it. In the article, I talk about my initial diagnosis, treatments so far, my work / life balance and raising money for charities such as Trekstock, who have been a huge help to me over the past couple of years. Nowadays I struggle to remember what it was like to live without cancer, to live my life and not feel as though I am in constant fear every single day. Cancer will always be part of my life, so it’s important to acknowledge that, but it is not all I am about.

If you’re able, do go and pick up a copy and have a read over your breakfast / exercise session / bath on Sunday morning. Thank you so much to the lovely Rosalind, Charlotte and all the team at YOU Magazine.

UPDATE: You can read the online version here

The Cost Of Living

I am now back living in the post holiday world of all work, very little play and many, many hospital appointments. I returned from my trip to America earlier in the week (see my vast array of holiday snaps on my instagram feed) and have already been for two blood tests, to my local pharmacy to pick up a prescription and had an appointment with a nurse at my local GP practice. Next week I’m due to visit Leicester Royal Infirmary for a consultation with my Oncologist and to receive my next dose of Immunotherapy. I also due to go to Cognitive Behavioural Therapy and have another appointment with the nurse at the end of the week. Having stage 4 cancer is a full time job, and it can become really tricky to try and fit everything in around the day-to-day life of someone in their early thirties. I have to make sure I write things down in my phone calendar and my hand written diary just to make sure I don’t miss anything, as it can be all consuming.

Despite my obvious frustrations and the frequency of these appointments it’s all part of my life living with cancer, a term I’ve coined ‘operation stay alive for as long as possible’. Each time I have to remind myself how lucky I am be able to have access to the National Health Service and everything it offers. Despite the constant bad press hospitals up and down the country get about long referral list and A&E waiting times, I still love the NHS.

The NHS turned 70 last week; having been born ten weeks premature I have benefited from various services my whole life and I certainly wouldn’t be living the way I am today without it. The resources that are put into cancer care have kept me alive 8 years after being told I’d probably only have about 18 months to live. I may have to travel a long way for my treatment, which is partly through choice, but I would take that any day over the alternative. My hospital have been amazing from the get go and I feel safe in the hands of the specialist teams there.

The cost for me to live is phenomenal; I read that Pembrolizumab costs over £1000 per 50 mg and the recommended average treatment every three weeks is approx 200mg. It’s definitely not small change! I know I wouldn’t be half as fortunate if I were born in another country, so when I get upset, frustrated and angry on my way to appointments I have to remind myself that the cost of living is high, but I am one of the more fortunate people. I guess it is Ok that there isn’t any free wifi or free parking with a Blue Badge at my local hospital if they are keeping me alive – it’s far cheaper than paying for private treatment elsewhere! My status as a member of the cancer club means I also received my prescriptions free of charge. A few years ago I had two cycles of another drug, Ipilimumab which cost that NHS approx £20,000 per treatment. I was initially meant to have four cycles but my cancer began to grown more rapidly and I had to quickly swap to oral drug Vemurafenib (another costly drug) in order to try and stabilise the disease before it killed me.

According to the latest publicity report the NHS treats more than 1 million patients every 36 hours, the maths to work out how many that is across one year is far too much for me to comprehend. I really hope Brexit doesn’t have a negative affect on the treatment I receive and impact the potential for any newer life extending drugs that may be developed in the future. The NHS and the wonderful people that work for it are there from the moment we enter into the world until the moment we leave. The NHS will treat patients no matter what; it’s a service for everyone regardless of status or background, rich or poor, young or old the NHS caters for all. Here is to another 70 years and more.

Thankful to still being kept alive.