Mis-Maligned

After a pleural effusion, a cytology test is performed. The results of my first two were reassuring. No cancerous cells found. However, there was a note of caution: the left pleural fluid cellblock contained ‘rare groups of highly atypical epithelial cells, consistent with metastatic adenocarcinoma.’

My third cytology exam, following last week’s procedure, was unequivocal: malignant.

Acccording to Medscape, ‘Development of a malignant pleural effusion is associated with a very poor prognosis, with median survival of 4 months and mean survival of less than 1 year.

Any treatment is considered palliative.

Grim and grimmer. However, my first response was take that twelve months and double it. Unrealistic? Sure, hell, why not. However, little about my last sixteen years has been realistic. Surreal is certainly a better adjective.

On Thursday I will see both Jess Lin and Alice Shaw and we shall discuss a pleurodesis.

And, a week later, I will hopefully be taking my lead in dose of TPX-0131. In my wildest dreams, I shall respond and begin to feel better.

In the meantime, I am still adjusting to, well, limitations. Because of fatigue, I had pushed last Sunday’s date night to this evening. However, after showering in preparation, I immediately felt nauseous and vomited. This is likely a side effect of the pleural effusion.

I called my (very understanding) date, who was already enroute, and told him I would need to cancel. Again. And that, in all honesty, I was fooling both of us in thinking that I was well enough to socialize. As an enthusiast, I sometimes operate under the assumption that I can just power through. However, my body is making it increasingly clear that it is time to rest.

So I shall. Pace myself. But, with not just the hope, rather the expectation, that I shall rise (and date!) again.

xo

9 responses to “Mis-Maligned

  1. Yes, Linnea. Those statistics have been so wrong before. I like that you are going to rest and expect to live! ❤️❤️❤️❤️

    Sent from my iPad

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  2. Yes, Linnea, pace yourself as I have every belief you will “Rise Again” ❤️✊🏽

  3. Ellen Hoverkamp

    Hi Linnea,

    Just writing to let you know that I am also rooting for you. (Count me among the MANY)

    I am a Smilow patient (New Haven, CT), treated by Dr. Scott Gettinger, who had been advised by Dr. Alice Shaw,

    A year and a half ago I had 2 thorocentesis in 2 weeks, and metastasized pleural effusion. Solution: Pleurodesis (the talc procedure) at the same time I was started on Lorlatinib. I know that Lorlatinib isn’t enough for you right now. They were giving me the choice of the drain too, at the time. I am glad I had the talc procedure but I may not have even needed that, because the medicine cleared up and shut down all cancer activity in the pleura anyway, in a week or two. I hope the same happens for you with TPX-0131. We don’t know each other but I keep you in my thoughts, with appreciation and hope, every day. Love and Flowers to you, Ellen

    >

  4. I had a pleural effusion. The malignant cells were analyzed and then found my Ros 1. I had pleuridesis. Here i am 7.5 years later after given a couple days to live. Never give up!! ❤️ We all are lifting you up Sent from my iPhone

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  5. pattywatkins, thank you.
    Linnea, you will rise up!
    xoxo

  6. Linnea, you are hopelessly, beautifully, amazingly, awesomely nuts and I love you!
    Cancer has never seen the likes of you.

  7. To my lung mirror twin, I have had malignant pleural effusion for a little over two years. Also loculated and with a “trapped” lung. I actually tried a pleurex catheter but had it removed after two weeks for a number of reasons. Pleuridesis was not recommended for me. Hopefully it will work for you.
    Hang tough my friend! You got this!

  8. And you will x

  9. Patti Helfand

    You always amaze me. Keep up the HOPE!!!

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