Stuck in Limbo

Yep them cancer cells are still there, multiplying like maggots in my lung nodes. My axilla nodes are sitting on the back burner for now, who needs armpits anyway?  Any slight cough, twinge, breathlessness all reminds me that this is potentially growing.

I met with my oncologist last Wednesday. She spoke to me, hubby and mum about these chemotherapy tablets called Capetibine . The side effects are very minimal compared to IV chemo and you get to keep your hair too!  I asked about any clinical trials going on in the area, one particular one I wanted to try was Immunotherapy. I don’t like speaking medical terminology to family and friends (that sounds so wrong, but I keep it on a need to know basis otherwise it confuses the hell out of them, nursey talk to normal people is confusing!!) so this trial I kept tucked away, so it was a shock to them when oncologist mentioned it that I got quite excited!

Unfortunately as with all clinical trials there is a strict eligibility criteria you have to meet, we think my history and diagnosis ticks all these boxes. A referral has been made to a specialist cancer hospital 60 miles away for me to possibly start this clinical trial. There are two options, one trial is called Keynote and the other is called Impassion, both use an immunotherapy agent called Pembrolizumab. Like all things that need referring, it takes time. I’ve already waited nearly 3 weeks since the secondary diagnosis to even be referred, mainly because I didn’t see my oncologist until nearly two weeks after the stage 4 diagnosis.

So yes, I feel a bit in limbo. I feel quite worried that I haven’t started any treatment yet and this cancer is festering away at my body. I’ve been told not to worry as it’s not attached to vital organs that’s pressing on systems that can affect my everyday living. To be honest, that’s really hard to digest and is quite hard not to worry when I look at my kids faces everyday and feel the guilt and dread that goes alongside it.

Part of me wants to throw the towel in and just say start me on chemo tablets now! But if I do I won’t be eligible for the trial, because part of the criteria is that you must have had only the first line of treatment only, starting chemo tablets is classed as a second line of treatment, so it feels like I cant win either way. I must hold on though a few more days to see if I’m eligible as this could be a groundbreaking new treatment for breast cancer. I know right now my cancer is incurable, so to have that tiny bit of hope that something is out there, makes me want it even more.



4 thoughts on “Stuck in Limbo”

  1. Your a very brave an strong young lady keep your fighting spirit up wish you all the luck in the world from someone’s whose been through breast cancer ❤️Xx


  2. Dear Michelle,
    I am sorry to hear of your further news and am hoping you will be accepted for the trial soon. You have been so strong since your diagnosis and things must be very frustrating for you right now. Stay strong Michelle as you have always been. Sending you positive thoughts and Best Wishes. Julie x


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