Update on immunotherapy trial

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Hi all, 

I had my first review today after 2 cycles of Cemiplimab combo treatment. My lung tumour has grown slightly from 5cms to 5.5cms and 2 chest nodes from 18mm to 20 mm but still considered as stable so the treatment can continue. 
No new tumours seen on ct scan and I’m feeling well apart from joint pain in my shoulders. Small price to pay - so far so good!

Hope everyone is enjoying the sunshine today.

Fi Blush

  • FormerMember
    FormerMember in reply to little-fi

    Hi, my first 2 scans remained stable on immuno, then every scan after that the tumours got smaller and smaller until there was none left to be seen. As said above, it is definitely tye case that tumors can grow initially on immuno - my onc made sure I knew that before my first scan, I think as he knew I'd be gutted at any growth. Hearts ah I see they've still not fixed the emojis on here Joy 

  • Well done Graeme, I hope you are NED or stable for a long time to come! Hopefully Little-Fi you will be telling someone the same thing as Graeme in a few years! 
    Bye the way Graeme, we could manage without emojis!!!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Graeme, that’s fantastic news. Thanks for sharing. I’m surprised my team didn’t tell me that if it’s quite common. Have you had any side effects & how long have you been on it?
    Long may you continue to be tumour free!! Blush

  • I hope that’s the case Annette!! Xx

  • FormerMember
    FormerMember in reply to little-fi

    Hi fi, I was on it for two years, fortnightly infusions. First became NED at about the 1 year - 18 month mark. Treatment stopped in June as it was only a 2 year course and I'm now back to no treatment and 6 monthly scans. 

    Compared to chemo it was an absolute breeze. At worst I felt a little tired at times, and my brain doesn't seem to work quite as well as it once did - more forgetful, find myself grasping for words (frustrating as an English teacher :)) and suchlike. It's hard to tell whether these symptoms are due to the 2 years of chemo, the gastrectomy, the cancer itself or the immuno though.

    If you held a gun to my head, I think I'd say that feeling tired was the only real side effect.

    Good luck Fingers crossed Hearts 

  • That is inspirational Graeme! I know you’ve had a tough time of it but to get this outcome is amazing.
    Are you still teaching? That in itself will make you tired!!

  • Hi Graeme

    Wow! And in a very topical description, A-MA-ZING lol. i hope you know what I mean, NED, brilliant I know you'll understand when I say that I've just picked up this thread, I hadn't received notification of it.

    We both have the same problem with forgetting nouns, they're the worst for me. Even when writing on here I've still got to try to find what I want to say, sometimes I need to Google a few words to find the word I'm searching for. Like you, I find it immensely frustrating and I'm ashamed to say that my wife and son don't understand and sometimes have little patience with me. 

    I mentioned to my GP that I was struggling with words and she gave me a dementia test which went well. Mental arithmetic is my forte. However I was referred to a hospital consultant, who called me and has diagnosed early onset dementia. I had a brother who unfortunately passed away a year ago and he had been diagnosed with something similar. 

    So it's great to hear that someone is moving away from this awful disease. Keep holding it at bay Graeme Smiley

    Tvman

    Love life and family.
  • Thanks little-fi, It has taken longer than we thought but we are both definitely on the right track now! Thanks for asking!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember in reply to little-fi

    Hi fi, sorry not here as frequently as I once was.

    It was literally the week I was due to return to work that I recurred, so that got knocked on the head. Thankfully my pension paid out etc, as, especially with the gastrectomy (tiredness, need to be able to rush to a toilet etc) , there's no way I'd be able to handle a full school day now.

    I am thinking about doing some volunteering once the CV situation has receded a bit.

    Love to all Hearts