Well this is going to be complicated…

I had scans yesterday and a zoom meeting with Dr. Lin and Dr. Shaw this evening. The ground glass in my right lung shows what appears to be more progression (but they are tiny right now). However, the area at the base of my left lung shows continued improvement.

This, and the relative lack of options, makes my decision harder.

Infusion is scheduled again for tomorrow but given that my mouth is still a mess of sores we are going to wait at least two weeks and then reassess. Ultimately it will be up to me.

Damn. I want to live but I also want to live well. My experience on this trial thus far has been pretty miserable.

However, Alice feels that if we let my mouth heal before another infusion, there is the possibility of ‘resetting’; that the side effects could become more tolerable.

I’ve got an awful lot to ponder.


11 responses to “Well this is going to be complicated…

  1. Thinking of you. Good luck in making your decision(s) – well it’s not so much “good luck” as it is the working on the challenge of making a life-determining decision. Well, even though I’m not expressing it well, I hope you know my thoughts. My best to an amazing woman!

  2. I hope that by holding two weeks your system will be able to “reset” so you can continue! I suffered 14 months on Poziotinob, infected nails, face rash that required steroid creams, diarrhea, hair loss and mouth sores, it was the worst but it bought time. That was 2017-18, at the time there were no other options. Since then, two new options have become available.

    Hang in there!


    Sent from Dawn Horner’s iPhone


  3. Stephanie Yocum

    You are supported whatever you decide. I am so glad you have the goddess on your side.

  4. Sorry to hear that you are having so much mouth pain and angst. Tough decision, but I’m glad you have a couple of weeks before you have to decide. You’re a smart, wise woman and will know what is right for you.
    Much respect, always, and hugs.

  5. Can I ask if there is anything in particular in your daily activities that makes the mouth sores hurt worse, something some other patient might have suggestions for? Does mint toothpaste or a soft toothbrush of gloss hurt? Does acidic or spicy or salty or chewy/crunchy food of veggies cause pain? Anything else in particular?

    Best hopes,

    Craig in PA

  6. Linnea, yes obviously a tough one, know that whatever you decide I support, love and respect you ❤️✊🏼

  7. Marie Hazelton

    You do have a lot of things to consider and well it is a big decision. Rest the body sounds like a good plan, if only you could rest your mind as well. Thinking of you often and always sending prayers for the best.

  8. They WILL go and not come back !!!!!!!!

  9. Jim and Charlotte Bodding

    We are rooting for you Linnea… Take care. We are thinking about you. You have given so much hope to us and, I assume, to many others. Live well and know that you have our respect and support.

  10. That is a tough one. I hope that the reset works – and I agree with Marie- rest your mind as well!

  11. Hope you are healing & feeling better every day!
    What a tough road & a difficult decision.. Glad you have Alice in your court! ❤️

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