The horses are out of the barn

The decision to start the new trial in a week was a good one. Results from my scan on 11/6 show growth compared to the scan on 10/26.

Increased size of left upper lobe masslike consolidation now measuring 42 x 17 mm, previously measured 38 x 14 mm. There are multiple solid and part solid nodules in the left upper lobe, some of which have increased in size for example a 7 mm nodule (series 6, image 230), previously 5 mm, and 11 mm nodule (series 6, image 187) previously 8 mm.

I have known since my first biopsy post progression that the histology of my cancer had changed to one that was more aggressive. This is the first time I have experienced such rapid growth though.

One week from today, on what happens to be my daughter’s thirty-sixth birthday, I shall take my lead in dose of lorlatinib and binimetinib.

In the meantime, I ask for your good thoughts/prayers/sorcery—all appreciated. I need to hit this shit with everything I’ve got.


16 responses to “The horses are out of the barn

  1. Go for it balls to the wall. Prayer flags flying.

  2. Sending thoughts and prayers your way – absolutely!

  3. 🀜🏽πŸ’₯πŸ€›πŸ½ on it!!❀️✊🏽

  4. Kristen Aliotti

    I’m probably most comfortable with sorcery! (I love your writing!) Sending hope and love.

  5. I am offering ample doses of all three.

  6. You will do great. Go after this monster with all you have. Good vibes being sent your way.


  7. Hit it hard. We will be praying!!!

  8. Sending prayers your way Linnea! πŸ™

  9. Hi my name is Kevin Smith and I have chondrosarcoma which has metastasized to my lungs. I have 5 tumors in my lungs, all are in the 2 cm in size. I was diagnosed on 12/11/18. Chondrosarcoma does not respond to chemotherapy so I am on keytruda, an immunotherapy drug, administered every 21 days by Ian infusion. As of today I have no breathing problems, but my tumors are still growing. Though some have slowed, and they say that I am stable, they are growing. My next scan is on 12/14, so you know the waiting game that plays with your mind. I am being treated at Hillman cancer hospital in Pittsburgh, Pa. I wish you luck, we all need it.

    I enjoy reading your blog. Kevin Smith

    Sent via the Samsung Galaxy, an AT&T 4G LTE smartphone

  10. You could ask for your next scan to be sooner than what the study requires. I did that for one of my trials at dfci. I offered to pay for the extra scan but it turned out I didn’t have to. CT chest scan is not too terribly expensive compared to the knowledge you may gain.
    You are still very fortunate to have options and to get treatment at a great cancer center. Best wishes

  11. Positive energy, love, and prayers coming your way!!!
    Love, Karen

  12. Always in my prayers. πŸ’–

  13. Yes I’m throwing,good wishes, best thoughts, prayers, pleads and love at the wall…you’ve got this!

  14. You have all of those.


  15. Hi Linnea,
    I’ve been reading your blog for years and find it comforting, inspirational and funny. Thanks for putting your heart into it!
    I too am an ALKie and I was diagnosed almost 8 years ago. I am fortunate to have the Goddess as my doctor too- as well as Jess Lin, equally a goddess.
    If you want to talk about the bini- lorlatinib trial please reach out- I started it on 10.15.20.
    Meanwhile I wish you all the best and thank you so much for your writing.

  16. Sending best wishes, positive thoughts, energy , love ❀️ whatever else it needs

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