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.

Standing Up To Cancer

Friday evening saw the annual Stand Up to Cancer telethon air on Channel 4. The night is a televised fundraising campaign between Cancer Research UK and Channel 4, that aims to bring people together to speed up progress in life-saving cancer research. Stand Up To Cancer donations help to fund research, which takes developments in the labs and accelerates them into brand new tests and treatments for cancer patients.

The charity telethon concluded late Friday night with the public in the UK having raised an incredible £24 million for cancer research and support, this is a huge £8.6 million increase on the £16 million raised two years ago. What incredible figures! It’s certainly shows the power of television and social media in raising awareness. Some of the patient stories were very emotional and hard hitting, it’s often to strange to think I am one of them, with my place in the stage 4 cancer club fully cemented.

The evening also saw TV appearances from You, Me and the Big C podcast hosts Debs (aka Bowelbabe) and Lauren (aka Girl vs Cancer). It’s great that they are continuing to break down barriers around cancer and the way it’s spoken about. I’d highly recommend the podcast they created with Rachel (aka Big C. Little Me.) for anyone who is unfortunate enough to be going through something similar.

I am debating taking on another hiking challenge next year, and watching parts of the Stand Up to Cancer programme has made me more determined to continue to raise funds and awareness despite my current injury. I have tendinitis in my right heel (most likely triggered from previous challenges including my most recent half marathon). The next trek isn’t until April 2019 so hopefully I’ve got plenty of time to get treatment on my ankle and get fit in preparation to take on the Jurassic Coast trek with Trekstock. Now I know what to expect from the last challenge I’ll need to take on some serious training this time around, perhaps some personal training and HIIT classes as well as waking. Anyone want to join me?

Although I participated in regular walks last time I don’t think anything could have prepared me for the reality of how mental and physically tough the whole weekend climbing the Lake District 5 Peaks was. I was a complete wreck! Still, time is a healer and I am ready for something new. I am determined to keep on standing up to cancer and carrying on as best I can.

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.