On Monday I started my clinical trial at Peter Mac. It is an immunotherapy combination trial. Essentially my type of bowel cancer doesn’t respond well to immunotherapy alone, so this trial adds another agent to try to change the tumour micro environment to increase the response.
It was a long day, with bloods at 7:30am, the consultant at 9:30 and then treatment and monitoring from 11. I saw Jayesh Desai, who I had last seen a couple of years ago, who is the principal investigator on the trial. He spent a lot of time with mum and I and had some useful insights into my cough, which has been frequent and annoying, sometimes causing me to vomit. He is an extremely lovely doctor and I highly recommend him.
Jayesh also gave me my scan results. I knew my blood markers were reasonably low but it is always anxiety provoking to get results. The good news is they are stable.
I had the main side effect from the trial drugs which is a terrible headache. It lingered until Thursday but hopefully it will ease each cycle.
I’m also very tired – I think in part from the travel to Melbourne but also because I have been so stressed about finding a trial and getting on it. Finding an appropriate trial and making it happen has been one of the hardest things since diagnosis. For various reasons I’ve had no support from my Canberra medical team, and it has really been anxiety provoking. I’m very grateful for my existing relationship with Peter Mac and my oncologist Michael who I know did lots of work to get me on the trial.
I have two more trips to Melbourne this week for bloods and then treatment again on the 16th. Future cycles will be a bit less demanding in terms of travel, with the exception of cycle 4.
I would really appreciate all thoughts, prayers, good vibes etc for this trial. It’s hard to know if it will work as I’m only the 30th person worldwide to have this combination.
The Fairytale and the Abyss 
Caitlin that sounds so gruelling. Thinking of you often with respect (the kind that comes with a culturally appropriated clenched fist to the chest), admiration at your intelligence, resourcefulness, advocacy skills, organisational skills, resiliance and general kick-arsed Grrrl power. You’ll be the bestest, most high-achieving and lab rat ever!
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Sending you very much love and hope and grace and peace. I will be praying. I don’t know you but I appreciate your updates as they remind me to keep praying and sending every good wish your way. You are resourceful and resilient and so much more. Very best wishes for health and strength xxx
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Sending all the +++ vibes and effective trial juju I can your way. I am begging the universe: tenacity for the win – pllllleeeeeeeeeaaaaase.
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Dearest friend – that is a very exhausting process for you. I hope that horrible headache lessens. You are certainly a brave pioneer being the 30th. I’m always thinking of you and sending you lots of love. I’m looking forward to our next visit. Xx
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Hi Caitlin
You sound exhausted. …physically and emotionally. It must have been really difficult to feel abandoned by the Canberra medical team.
Re the immunotherapy….not sure whether your Mum has told you but my friend Jenny who has had 2 bouts of lung cancer with surgery and chemo, is now on immunotherapy. I realise it will be different from yours but it has been great. I go with her. Initially it was every fortnight and then ( it’s also a trial) it is now every 4 weeks. All her markers have improved. The only downside is that we have to go to the same area where she used to go to chemo…which made her very sick.
The staff are wonderful…I’ve become very fond of the oncologist who is a somewhat earnest Indian Australian and the other other staff at the centre are delightful. Nothing is too much troubled they act as if they have a major investment in Jenny’s recovery…. so I realise how awful the Canberra experience must have been.
From my perspective, Melbourne has the other advantage of giving you and your mum time together…a gift to both of you….you can relish her quirky frankness and the intensity of her love for you ..I imagine that one of the challenges of living with your illness is negotiating the dynamics of everybody around you. All loving you…all feeling overwhelmed….and to have some time just with your Mum could be a very good thing….and I promise, I will be there for her.
I know you realise how much I care for you. I always feel a bit guilty that I can’t offer to pray for you but I do send every positive thought in your direction.
Lots of love
Sue
Sent from my iPad
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I’m always thrilled to see an update from you! Hoping and praying the trial goes well! XOXO
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