Scan Results And Festive Freedom

Yesterday I received results from my last PET CT and MRI scans and I’m relieved to say that the results were good and everything continues to be stable.

After getting over the Scanxiety, I was feeling somewhat confident that the results would be stable, however the worry is never too far from my mind. Hopefully this means I can relax a little over the Christmas and New Year period.

I am fortunate enough to be having a chemo break and am not due back to see the oncology team at my hospital in Leicester for another six week. In my 2 and a half years of receiving Pembrolizumab this is a rare occurrence, and one I am especially grateful for at this time of year, fingers crossed this will be a blissful time of freedom over the festive period.

I haven’t written a blog post since The Truth About Depression three weeks ago. Part of me has been living in purgatory waiting to get my scans over and done with, and the other part has felt like I’ve not really got anything more to say. I haven’t suddenly snapped out of my downward spiral, but I am taking more steps to try and help myself.

I have now had my 41st cycle of Pembrolizumab and the fatigue seems to be hitting me more than ever. Lucky I have been working from home and resting which always helps, but powering through never feels like an option when it comes to post treatment tiredness. This is something I didn’t appreciate before I started having Pembrolizumab. A while back I wrote a post called Tired of Being Tired, which summarised my feelings on being physically and mentally exhausted. After reading it back, I feel the same as I did back then, annoyingly getting used to it doesn’t make me feel any less exhausted.

Exhaustion comes in waves, and when it hits it seems to affect my energy levels straight away. There is something about being in a hospital waiting room which makes me feel so sleepy, even with all the alarms and buzzers going off every few minutes. Having the treatment itself makes me become a total zombie, and I often struggle for a few days afterwards, making small things such as walking up the stairs or packing a bag seem like a huge struggle. I don’t trust myself to drive after chemo as my judgement certainly isn’t what it should be. I long to feel free and full of energy again, so perhaps having a treatment break over Christmas is exactly what I need.

A couple of people have asked me if I planned to celebrate my stable scans results. A few years ago I used to mark them as more of an occasion, but I honestly don’t think about them as a moment to jump up and down for joy. Nowadays I am too scared of what the future holds and I’ve been feeling particularly vulnerable over the past couple of months.

Of course I am so grateful to be in this position, even if living with cancer does take its toll, but I prefer to try and reset my mindset to one that isn’t in complete panic mode. I want to try and look forward to the next few months rather than just celebrate one moment. Hopefully I will feel less like I’m holding a poisoned chalice and perhaps as though I am holding a glass half full instead.

Fingers crossed for more good news in 2019. Until then I need to go back to sleep, rest and try to fight off a cold I think is coming my way as I’m a bit under the weather.

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.