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Lab rat time

Since I last wrote my markers have been on a steady (but not terrifying rise). We made the decision to add the irinotecan back in to the protocol but even at its highest dose it appears I’m resistant.

I had treatment on Monday and I have decided that bar some amazing scan results next week I’m finished with the standard of care drugs for the present. There is one more drug available to me but it’s not very good so I’m in no hurry. It feels good to have made the decision although I had hoped for more time on cetuximab.

Which brings me to clinical trials – a little sooner than I had hoped but something we knew was lying ahead.

Because of how small Canberra is it is likely that I will do a trial in either Sydney or Melbourne. We have identified a couple and will meet with my oncologist at Peter Mac in early July.

My friend Sarah deBord wrote this excellent piece on clinical trials. As you can see from it, there is a lot of reliance on patients to identify and drive the process of getting on a trial. It’s stressful.

https://www.curetoday.com/community/sarah-debord/2019/05/sorry-princess-leia-but-a-clinical-trial-is-my-only-hope

I will update again once things are a bit clearer. But in the meantime I’ve got some fabulous things to keep me busy during my chemo wash out period. I will be able to work more which makes me very happy. I love my job. I’ve got a trip to the snow planned with two of my lovely friends. And lots of nice play dates and catch ups with friends organised.

Please keep me in your thoughts and prayers – I get a lot of comfort knowing people are thinking of us.

Also Violet turned four!!! Here she is at her princess party watching her cake come out. Best kid.

5 thoughts on “Lab rat time

  1. I was contacted by a friend of a young man who was just diagnosed with the dreaded stage 4 GI cancer – was able to send him the link to your post “best advice: diagnosis” it helped them a lot.

    We need a national matching database for people with cancer and clinical trials – perfect use for artificial intelligence and machine learning- an AI treatment advocate that works 24/7 searching & summarising what’s out there.

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  2. Caitlyn,
    Violet is absolutely darling! You know my BG just turned 4 in March–such a magical age ❤ I’m glad you have things to look forward to, but of course it sucks that you have to shop around for your “plan B” and venture into the unknown. I’ll be rooting for you! And it’s always good to hear from you ❤ XOXO

    Like

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