On 24 February 2014 I was given another chance at life when almost all our hope had disappeared. Almost a month earlier, we had found out that I was not responding to my initial treatment as a Stage 4 Melanoma patient – Debrafenib and Trametinib. The cancer had spread so far and so quickly that I was given just 3 months to live.
I was given one last glimmer of hope; hope that I would gain access to a clinical trial that was about to close. The clinical trial was for an immunotherapy treatment now known as Keytruda.
That first dose of Keytruda on 24th February 2014 was the beginning of an amazing (almost) 2 years.
Within weeks, I already saw signs that the treatment was working with visible shrinkage in my subcutaneous lesions (these are lesions that I can actually feel in the fatty tissue). Over the first few months I slowly reduced my pain medication, a sign that the lesions on certain organs were behaving themselves.
Most importantly, I felt well. Serge and I got married, we travelled to the USA, I exercised everyday, I started the blog and I found my routine. No one would have ever looked at me and assumed that I had terminal cancer.
I never expected, nor expect, a cure, but what Keytruda gave me was normality. It gave me an amazing life! How fantastic is it that there is a treatment out there for terminally ill cancer patients that actually give them a life worth living?!?
For over 3 months now, I have been expecting that my time on Keytruda was coming to an end. My cancer had been stable (no shrinkage or growth) for over 12 months, but we started to see some very small changes in two areas. A PET scan showed us some pretty amazing results with the majority of my lesions inactive and only 4 lesions remaining active. This was huge. It was great news. Unfortunately, 2 lesions that were changing would result in me being removed from trial.
Yes, you are probably thinking ‘that is so unfair!’ but it is what it is. I probably would have been pissed off if my last scans had shown only a millimetre difference and that ended up pushing me off trial, but that was not the case.
On 9 December, after 32 cycles of Keytruda, I was removed from the clinical trial. My CT results showed that the adrenal gland lesion had grown by over 1cm (Remember, I was expecting a millimetre), which was quite a shock. And, for the first time since starting Keytruda, my LDH levels in my blood had increased slightly.
It’s simple, Keytruda was starting to not work. I needed to change treatments.
So here I am back on Debrafenib and Trametinib (the treatment that failed miserably the first time around). If this treatment doesn’t work, or when it stops working, I can always return to Keytruda and give it another go.
It has been a tough few weeks, hence why I have not updated you earlier. My doctor gave me the option to have a break before starting treatment, which I said no to.
Emotionally I am doing ok. I am scared, but trying not to get ahead of myself until I have my first blood test and scans. I feel like I am one step closer to dying, but I can only hope that there are plenty more steps.
I am adamant that I don’t let the side effects of this treatment slow me down. I was so spoilt on Keytruda with my only side effect being my pigment loss resulting in my white hair and patchy skin. I wake up every morning and either go to the gym and have personal training or I go to pilates. After that I am either heading to work at the gift shop, working on the blog or having meetings… I don’t stop.
I don’t want to stop. I don’t want to be a sick person.
I was going SO well on the new treatment, but Friday night I woke up in the middle of the night with a fever and have been having fevers throughout the rest of the weekend – panadol and nurofen don’t seem to keep up! I have stopped my treatment until I have the go ahead (hopefully tomorrow) to start again.
I think this little bump in the road is because I pushed myself too hard last week, and I will need to learn how to, not slow down, but be smart about my time and what I say yes to and what I simply can’t do.
ON THAT NOTE, I do want to share some news ‘officially’ and not just hint at it like I have been.
I am excited to announce that I am starting my own little online shop selling beautifully hand selected care packages for life’s hardest moments. The shop has been named ‘Love, Emma’ for its connection to my blog and my sign off at the end of each post.
The idea has grown from the original post that I wrote back in September. It is founded on the fact that it is often difficult to know what to do or say when someone you know is going through a difficult time. ‘Love, Emma’ allows you to select the perfect gift with the confidence that the products have been hand selected by someone who understands the struggles of long-term illness and heartache.
People who have been aware of the business have asked me if I am putting it on hold considering the recent developments with my health – NO WAY! One thing I have learnt is that you can’t just put things off in fear that you are too sick or will not be there to see it through. I am really excited about this and think it is the perfect way to remain busy and still be able to work in the comfort of my own home on the days where I am not feeling well.
Currently, our dining room has been taken over by the products that will make up the care packages (I am currently looking at a big box of my favourite sequin slippers!!). Serge is in his man cave working on the website and I am busy typing all the content for the website.
We are hoping to officially ‘open for business’ at the end of January. In the meantime, you can enjoy some sneak peaks of the products on the new social media pages.
I hope you come along on this new and exciting ride with me! As always, I must continuing plodding along and I definitely plod along in style!