“Life is so ironic, it takes sadness to know what happiness is, noise to appreciate silence and absence to value presence”

I’m not sure who said that, but I read it somewhere.  To me it’s pretty obvious.  You can’t have one without the other: Ying and yang; light and dark; day and night; life and death.

Over the past 2 years I’ve been living my life, probably with more enthusiasm than I ever really did before, prioritising family and friends, and taking time to stop and smell the roses.  Previously, I think I was just going through the motions, afraid to commit to life or a future or to really put myself out there.  But since I was diagnosed with bowel cancer of T3 N2 M0 at stage 3, when I was 32 years old, my outlook and life has definitely changed.

From April 2016 to April 2018, I have had 2 surgeries, 38 IV chemotherapy sessions (that lasted 3 days at a time, every fortnight) and 2 months of chemotherapy tablets.  Everyone has their own journey.  This one just happens to be mine.

After a solid 2 years of treatment I was told I was in remission (for the 2nd time) and (for the first time) granted a break from chemotherapy.  Throughout May and June 2018, I was in remission and was fortunate enough to enjoy a week holiday with my family to Zakynthos – a beautiful Greek island where the sun shone, the sea turtles were laying their eggs and where I could relax and recoup away from the stresses of constant chemo.  This break was desperately needed by my family too, who had walked each step of the way with me for the last two years.  Thinking I was in remission was short-lived though, as soon after we arrived back home, my PET/CT scan results showed that the cancer had never truly gone away, and in fact was increasing in size and activity.

Luckily my oncologist was aware of a clinical trial that was in its third phase, taking place next door, searching for bowel cancer patients exactly like me.  Now you’ve probably heard the statistics about bowel cancer already: it is the 2^nd biggest cancer killer in the UK; if caught early it can be easily prevented, etc.

Well, my bowel cancer’s DNA has a BRAF V600 E and PIK3CA mutation with a KRAS and NRAS wild type, meaning it is very rare and not easily curable, and it is aggressive and could flare up at any moment.  So, I’m basically in the minority of bowel cancer patients who can be actually be treated.

There are different pathways in which cancer develops, and the table below (from  https://www.wjgnet.com/1007-9327/full/v20/i14/WJG-20-3858-g001.htm ) shows the various types of bowel cancer mutations that can be treated with drugs.  In this table, I am represented by the green 2% category.

Needless to say, that due to the rarity of my cancer mutation in colorectal patients, there have not been any clinical trials on this specific type…until now!  The Sarah Cannon Institute on Harley Street, London, (http://sarahcannonresearch.co.uk/) is in charge of various clinical trials that are being tested around the world.  The specific trial I am on is called BEACON and is led by Array BioPharma Inc (http://www.arraybiopharma.com/).  It is now in its third phase.  In recent years, the BRAF gene was found in Melanoma patients and certain drugs were used to target their specific mutation.  These drugs are now being used in this trial to prove that it can also be used for BRAF patients with colorectal cancer.  There are 3 types of treatment: triplet, double or standard.  I am on the double and therefore am receiving Encorafenib + Cetuximab.

I applied for the clinical trial and was tested by the trial company on 25^th June 2018 and began the treatment 4 weeks later on 24^th July.  Tomorrow will be the beginning of my 5^th week on this trial and already I am feeling so positive about it all!  So far, my side effects have been minimal; an increase in quantity of tiny moles; a few moles being slightly raised; itchy scalp; sensitive skin, and; immediately following my IV transfusion of Cetuximab I have a couple of sleepless nights and sleepy days due to the steroids and anti-nausea drugs they provide at the same time.  In general though, it is a lot better than chemotherapy and I am finding that my energy has been gradually improving since I stopped having chemo almost four months ago.  However, some echoes of side effects are still with me, mainly fatigue and my peripheral neuropathy.  I have met a few other patients who are on the same trial as me and they are delightful, strong and funny people who boost me on.  The staff there are always smiley too which definitely helps me with my need for positivity.  Watch this space and I’ll keep you updated!

Useful links:

https://www.clinicaltrials.gov/ct2/show/NCT02928224?term=beacon+crc&rank=1

http://www.arraybiopharma.com/

http://sarahcannonresearch.co.uk/