Summer Scan Results

A month ago I had my second PET CT scan since adopting a surveillance approach to my treatment for stage 4 melanoma. Like last time, I had to wait almost a month to see my consultant for the results. Yesterday I saw my team in Leicester an am happy to report that for the most part all has remained stable, which is cause for a celebration.

Annoyingly, I have been told there are a couple of very small ‘hot spots’ which were present on my most recent PET CT scan, one in my arm and another at the back of my throat / nose.

My Oncologist suggested there was no cause for any immediate concern, which is great, however I’m a bit thrown by these small spots appearing on my scan! I feel physically well and expected the results to continue to show no evidence of disease (NED), so the fact this isn’t quite crystal clear means I’ve been caught off guard. I’ve been riding the NED wave for some time now, so I’m disappointed.

I was offered the option to be referred to an ENT specialist to investigate this further, but my Oncologist felt this unnecessarily so I decided to trust his judgment. I’m also still enjoying the freedom of having very few medical appointments and I’m not keen to start adding to the load again unless it’s 100% necessary.

A PET CT scan doesn’t diagnose cancer itself, so It is very likely that the hot spots might have been caused by other factors such as a blood test / injection or even a cold.

The current plan is to carry on without treatment and take a look at my next scan in a couple months and act then if there is any reason to. It’s feasible that these spots will have disappeared by then, and no further action will be needed, but it’s certainly freaked me out a bit. I guess this is the nature of being on ‘watch and wait’.

In other good news, I’ve been told that all being well we can discuss the possibility of getting my portacath removed once I’ve been off treatment for a year.

For the most part my glass remains more than half full, something I’ve been trying to tell myself over the last year or so. There are plenty of adventures planned before I have both an MRI and PET CT scan in October, so hopefully my mind will be occupied.

Melanoma Awareness Month

May is Melanoma Awareness Month, so I thought I would take an opportunity to write about the signs and symptoms. After all, it is the reason I write this blog in the first place.

For those who might not be aware, I was diagnosed with Stage 4 melanoma in September 2010 at the age of 23, having originally been diagnosed with Stage 1 melanoma five years earlier when I was 18. I am almost 32 and have been living with cancer the whole of my adult life. I initially began my blog to share my story and raise awareness, and since then I have appeared in numerous campaigns for cancer charities, featured in a BBC documentary A Time To Live and told my story in the Daily Mail’s You Magazine. I never have, and never will be a sun seeker, but my experience goes to show there is no discrimination when it comes to getting cancer.

When I was diagnosed with Stage 4 cancer, everything felt very out of my control and I felt all my independence was taken away from me. Looking on the bright side, I’ve now been living with my diagnosis for almost 9 years, and in some ways I am stronger than ever. The experience has shaped my whole life, so unsurprisingly I talk and write about it a lot. I struggle with the mental and physical of my diagnosis on a daily basis and are a constant reminder of what I have been through.

Melanoma is a type of cancer that develops in the cells (melanocytes) that produce melanin, the pigment that gives skin its natural colour. Melanin helps to protect the body from UV radiation from the sun. According to the NHS website melanoma is the fifth most common cancer in the UK and there are around 13,500 new cases of melanoma are diagnosed each year. Stats also suggest that more than 2,000 people die every year in the UK from advanced melanoma, which is higher than I expected, although I’ve always been told not to look at the numbers.

Melanoma is caused by skin cells that begin to develop abnormally. Exposure to ultraviolet (UV) light from the sun is thought to cause most melanomas, but there’s also evidence to suggest that some may result from sunbed exposure too. In 2018, Melanoma UK launched a petition for the ban on sunbeds in the UK after a successful ban of commercial sunbeds in Australia. The skin is the bodies largest organ so it’s important to take care of it as best we can. The charity also recommend regular self examinations can help lead to an early diagnosis and in turn increase chances of successful treatment.

The most common sign of melanoma is the appearance of a new mole or a change in an existing mole which can occur anywhere on the body. In my case, I had a suspicious mole removed form my neck in 2005. The NHS website has a handy guide on what to look out for which is detailed below.

ABCDE

  • Asymmetry – the two halves of the area may differ in shape
  • Border – the edges of the area may be irregular or blurred, and sometimes show notches
  • Colour – this may be uneven. Different shades of black, brown and pink may be seen
  • Diameter – most melanomas are at least 6mm in diameter. Report any change in size, shape or diameter to your doctor
  • Elevation or enlargement – some melanomas increase in size and may then become raised above the surface of the skin. Sometimes the mole can remain the same size and the area around or under it can appear to swell.

Follow Melanoma UK on twitter to find out more about Melanoma Awareness Month. It’s not ‘just’ skin cancer.

When No News Is Good News

A few weeks ago I had my first PET CT scan since adopting a ‘watch and wait’ approach to my cancer treatment earlier in January. Although I had to wait almost a month to see my consultant for the results, I am thrilled to report that all has remained stable.

I feel like this a major hurdle I’ve somehow manage to navigate. Naturally, every scan makes me anxious and scared, but this felt different as It was first time in years I’ve had a scan whilst off treatment. It’s the first time since I stopped doing anything to help my melanoma remain stable. No longer doing my bit by going for Immunotherapy is hard to get my head around, but as they say, no news is good news.

I am still feeling very fatigued, but as many people have pointed out to me I have an active social life and a busy full time job, so there is no doubt in my mind these are contributing factors. Often it feels like 10 hours of sleep a night is not nearly enough, so I probably need to reign it in a bit. It’s hard to find the time to see friends, family and work a 40 hour week, but I often feel like others around me manage it! I know my next few weekends are quiet and I have some annual leave coming up soon which is a blessing as I can spend some much needed time chilling out, watching Netflix, getting up late and doing small things like sorting out my wardrobe, and putting photos from my summer holiday trips to America and Thailand on my laptop and getting some printed; something I’ve promised myself I’d do for months, but I’ve never felt I had the time.

I’ve also been relatively quite on my blog of late as I’ve tried to settle in to my ‘new normal’ and readjust to my routine (or what feels like a lack of routine altogether!) and in all honesty, I’ve been too tired when I get home from work to write a post when I don’t feel I’ve too much to say. I’m just trying to get on with my life, which is a good thing, and exactly what my Oncology team have been telling me I need to do.

I’ll be celebrating today’s win with an early night and attempt to carry on my ‘new normal’ life until my next scan in the summer.

Finishing Cancer Treatment

This is a blog post I never thought I would write, I’ve been keeping some news to myself over the past 12 weeks, which is a pretty big deal. I am no longer receiving Pembrolizumab on the NHS. For now, I have finished taking the drugs and am treatment free and am adopting a ‘watch and wait’ approach.

I am no longer making the trip to Leicester Royal Infirmary every three weeks for Immunotherpy and am now on surveillance. After receiving various chemotherapy and Immunotherapy treatments over 4 and a half years I have now pressed pause on this part of my cancer journey. This means I will have regular scans to check for disease progression and wait to see what happens, and make a decision about future treatment when the cancer returns.

For me, being told my stage 4 cancer diagnosis meant I’d likely live for 18 months back in 2010, It’s difficult to know how to process where I am at right now. This remains even more difficult to explain to others, and I am sure there will be many reading this blog post who will ask how and why this has happened. Some my query the status of my health, does this mean I am cured?! Sadly not, but for now at least, it appears that my melanoma is under control and my last few scans have appeared to show little or no evidence of disease present in my body. Melanoma is hiding away for now, however, it is an aggressive cancer so I really don’t know for sure what could happen later down the line. All I am able to do for now is to attempt to live in this new world and continue my day-to-day life, in the hope it’ll be a really really long time until I have to resume treatment.

I am simply waiting, and taking things one day at a time, as only time will tell if and when my cancer will return. I have been on ‘watch and wait’ earlier in my stage 4 journey; after surgery to remove my lung tumour in January 2011 I remained disease free until May 2014. I still had the occasional subcutaneous lump crop up somewhere that was surgically remove, but for the most part was considered NED (No evidence of disease).

Pembrolizumab has been my life line over the past two and a half years and 40 odd cycles later I am going solo. For me, this is incredible news that until just before Christmas seemed like a total pipe dream. Immunotherapy is still so new, so it has been difficult to predict what the future holds with limited data on treatments, and the likely effectiveness they could continue to have in the future.

To cut a very long story short, I visited my oncologist in November last year and he informed me that it was looking likely that The National Institute for Health and Care Excellence (NICE) were planning on making some changes to how advanced melanoma is treated, specifically for patients who had been taking the drug for over two years and were currently NED. He explained that the current guidelines were set to change, which meant that if I stopped taking Pembrolizumab I could be re-challenged with the drug again if necessary in the future, therefore giving me a chance to have a break for the gruelling routine. This came as a huge shock to me, as it was the total opposite to what I had been told before. I have been living in the knowledge that I would be on the drug for the rest of my life, or until it stopped working, as I wouldn’t be able to take it again should I stop voluntarily and recurrence occur.

My oncologist told me that when the drug was first given on a trial basis eight years ago it was only given for two years, so I believe there might well be some people out there who are doing well six years post Pembrolizumab, but the data doesn’t go any future back. If so, I’d love to hear experiences of these patients. Naturally, I am sure the decision by NICE is also a cost saving measure, as it is so expensive to produce. I guess it works out cheaper for patients to re-challenge later down the line rather than be on the same drug for years on end. I am ok with this approach as long as I know I have options. When I first took Pembrolizumab in 2016 it was my only treatment option, but now there have been other drug developments in the field, meaning in the future I might not have to put all my eggs in one basket. It is petrifying, but I am hopeful there will be more positive change around the corner.

In late January, after a delay in the final decision I was told I would now be under surveillance. This was just two days before I was due back for chemo following a Christmas break. Being under surveillance makes it sounds like I am been threatened with as ASBO, or about to take an exam under timed conditions!

As my portacath is currently not in regular use it now needs to be flushed frequently. Right now I am unable to have it removed, I asked my oncologist about this and he said it should be left in for the foreseeable future and we might be able to discuss removal at some point down the line. Due to my hospital being far away from where I live this has taken longer that usual to sort out but hopefully my portacath will play ball at my scan tomorrow.

Over the last three months, the decision to stop chemotherapy has had a big impact on my mental health. This hasn’t come as a huge shock to me as I have felt as though a rug has been pulled from under my feet. All of a sudden the security that I once knew has disappeared and I am in uncharted territory. As much as I hate having treatment, I felt like I was doing my part to keep this awful illness at bay, but without it, I feel like I am going into battle without any armour. Surely I can’t just do nothing?!

I have been cautious not to mention this to many people, as the future is so unpredictable, but it’s now been 12 weeks since my last infusion and I am due my first PET CT scan tomorrow to check for any progression. This is the first time I have had a scan since early December, so I am keeping everything crossed the drugs are continuing to work after treatment has ended.

I’ve heard a couple of stories from people who have also stopped Pembrolizumab, but have done so in the knowledge they cannot be re-challenged. Apparently, it takes a few months to adjust, so unsurprisingly I haven’t felt better in myself as yet. I am waiting for some new energy levels to kick in sometime soon!

If I am honest I still can’t believe it, given all the negative things I have been told during my cancer journey it is a lot to get my head around. Despite everything, I know how lucky I am, even on days when I don’t feel good. I will never be completely rid of cancer, it will always be a huge part of my life, but for now things are ok.

I will update with my news once I’ve had my results in a few weeks.

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.