2nd Anniversary of the BEACON Trial – Update

Well, here I am, on the last day of July 2020, reflecting on;

  • The past few months of my adhesive capsulitis (aka ‘frozen shoulder’)
  • The past four months of lockdown as a ‘shielded’ person, due to COVID-19
  • The past 10 months of seeking help from self-improvement courses
  • The past 13 months of throwing myself into self-care and personal development, in order to better equip myself to deal with challenges that life throws at me

And quite significantly,

  • The past 2 years of being on the BEACON trial for BRAF-V600E Bowel Cancer Mutations, at the Sarah Cannon Research Institute (SCRI) clinic, based in London.

2020 July Amie at flat

Yes, two years ago, I started as a participant on the BEACON trial to treat my BRAF-V600E bowel cancer mutation.  I had been diagnosed just over 2 years previously, and had been on constant treatment, in the form of surgeries and chemotherapy, before joining the trial.  I am so grateful that I was accepted, as it came along at the right time for me.  Chemotherapy had wiped me out.  This month marks two years of being on targeted therapy.  I have written this blog to celebrate and recognise that, and, also, to share my recent scan results…

 

When I was accepted on to the trial in July 2018, I had my baseline scan.  Whenever I have a scan at the SCRI, they always compare two targeted lymph nodes.  Lymph node #1 is, a lymph node, in my right external iliac node, and Lymph node # 2 is, a lymph node, in my left common iliac node.  They also look at my non-measurable disease areas.  This is not to say they cannot be measured, because they can, as they are large and suspect, but just that, they are not needed to be measured for the purposes of the trial.  These are usually noted as “widespread retroperitoneal lymphadenopathy involving the retrocaval, left periaortic, right and left common iliac, external iliac and internal iliac chains”.  These ‘unmeasurable’ areas have remained stable, with the odd ‘blip’ here and there, but then returning to ‘stable’.

When I began in July 2018, my baseline scan was noted as Lymph Node #1 being 1.9cm, and Lymph Node #2 being 2.5cm.  By August, last year, they had reduced to 1.6cm and 2.4cm respectively.  Since then, my scan results have always been the same; “stable with no new lesions”, which has been great.  However, my last two scans have shown a slight shift in the measurement of these two lymph nodes.  Even though the doctor at the clinic says not to pay attention to small millimetre changes either way, as lymph nodes can fluctuate like our weight, I can’t help but get excited and encouraged by my most recent scan…  Lymph Node#1 now reads 1.4cm and Lymph Node #2 reads as 2.1cm!  This makes an overall difference from my scan of July 2018, when I first began the trial, of 26% and 16% reduction respectively, over the past two years!  (NB: If any of my doctors are reading this, I do acknowledge that anything less than 30% in either direction is deemed as ‘Stable’.)

Whether this is due to the drugs, the IV now being changed from weekly to fortnightly (due to COVID-19 precautions), my increase in meditations, visualisations and spirituality for self-care, my desire for self-improvement by re-training my mind to think differently, or all of these things combined – I don’t know.  Maybe it’s being open to receiving the energy of universal healing love and passing that love onto others too.  Whatever it is due to, I am thankful for being here right now, waking up to another gorgeous orange glowing sunrise, grateful for all that has come my way.  I know of others who have faced or are facing difficult times in their health, and I don’t take my latest news for granted.

 

I’d like to take this opportunity to pause and send love to those scared and suffering from disease – to them and to their loved ones.  You are not alone, and you are in my thoughts.

Sending love to you all and wishing the golden sun rises for you always, giving you strength.

Love Amie

xxx

IMG_1601 (2)
The morning sunrise peeking up behind the tree tops

 

3 comments

  1. Amie, you’re an absolute inspiration, so positive and calm, everything that comes your way you deal with in the most angelic way, words cannot describe how proud I am of you and how pleased I am to call you my friend.

    Keep strong and positive.

    Love from us all.

    Xx

    Like

  2. So so happy to hear this. I always look for updates. This is fantastic. Sending so much love, josie (csm) xxx

    Like

  3. Amie you really are amazing, I’m so pleased to hear this and I think of you often. Such an inspiration honey ❤

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s