Metastisized from tonsil

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Hi everyone, glad to have found this group. It's a strange time to have a terminal prognosis, when so many people are dying daily from a pandemic. It makes you feel fortunate! Though it does restrict the potential to explore a bucket list! 

Anyhow, I spotted some signs early so I've maybe got 18-24 months. Lots to think about at the moment but I'd be pleased to hear from anyone in the same boat, or I guess more likely one that set sail a bit earlier. 

I'm mainly interested in early symptoms, and decisions around treatments to slow things down.

Keep cheerful everyone!

  • Hi

    My nodules are still relatively small, the biggest is 11mm but they are deep and in both lungs. I don't have much in the way of symptoms yet, just short of breath on exertion and feeling constantly knackered but that might be my lack of fitness. I am expecting to feel worse once I start chemo on 30th April and it is difficult to swap mild symptoms for chemo side effects without any confirmed benefit. My tumours are mucinous which means that they don't tend to respond well to chemo and I have been given a sell by date of two years. I guess that my worry is that I am choosing to spend precious healthy time having a treatment that will make me feel awful with no guarantee of an extended lifespan. On the other hand I am not ready to give up trying yet as no one knows for sure what the outcome will be. You have to be 'in it to win it' is my current mantra. It hasn't worked yet for winning the national lottery but surely my luck will change soon?

    With the current lock down I suppose chemo is as good a way to spend time sat at home as any. I would prefer other hobbies tho.

    A life lived in fear, is a life half lived.
    Nicky
  • Hi Nicky, thanks for the reply. I guess our sell by date is quite similar. My largest nodule is 14mm which the clinicians seem to suggest is quite small (it sounds quite big to me!). I understand they double in size in 400 days so I guess that's when it will get tougher. As I'm asymptomatic right now they're suggesting no treatment, particularly with C-19 everywhere.

    So I'm working (from home) and still cycle training daily. Luckily my lungs are the strongest part of the holy trinity of lungs, legs, and heart, so right now my performance is only marginally impaired. Not that it matters because there is no racing right now! 

    The current lockdown is stopping any bucket list travel but on the upside the whole family is at home. I'm quite sanguine though I had hoped to have a few more years on the planet (I'm 52) and it's upsetting that I likely won't get to give my daughters away. 

    Really good to meet you!

    Still one of the lucky ones.
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