Row, row, row the boat

I am adrift. Not emotionally, not metaphorically–really, truly at sea.

First, my housing situation; non tenable in all respects and something that has weighed heavily upon my mind for weeks now. There will be a solution but at the moment, it is not obvious.

And then, more importantly, my health.

Lungs and Airways: The patient is status post left lower lobectomy. There is essentially stable ground glass opacity in the left upper lobe on image 64, measures 3.7 cm, measured 3.64 cm in November 2018 . There is essentially stable more confluent consolidative opacity in the LEFT lower lung, along the diaphragm, best seen on image 96. Multiple other ground glass and solid nodular opacities are essentially stable, for example in the RIGHT upper lobe on image 46, 51, LEFT lung on images 51, and 89.

As reassuring as my last scan was, the fact remains that I have multiple areas of cancer in both lungs. And, at long last, some information from the biopsy on 12/14/18.

Essentially, in addition to G1202R, I have now acquired two more secondary mutations, both of which are conferring resistance by compromising the ability of lorlatinib to bind. G1269A and S1206—I am not certain of the letter following 6 on the second mutation but it is no longer Y. More importantly, neither of these newly acquired mutations is actionable. As in, there is no next therapy.

Adrift without a paddle, as it were. Or maybe a more apt metaphor is that I am in possession of one paddle yet, but it is busted. And that would be lorlatinib.

I am still expressing ALK, so Alice is hopeful that lorlatinib continues to confer partial resistance. As she put it, the cancer is working very hard to get around it. My job, in a nutshell, is to hold on (stay alive) until a 4th generation ALK inhibitor is developed.

Big sigh. This is the time to think possible not probable. And also to not only get that good china out, but to use it at every damn meal.

xo


17 responses to “Row, row, row the boat

  1. sending good vibes your way…xo

  2. I’m not here to comment as often as I once was, however I do think of you often and keep you in my prayers.💕 my left lower lobectomy was 11/10. Your blog was and still remains a “light” through all this haze.
    You have been through so much! Still managing to keep the inspiration going 🙏 you are a beautiful, strong caring woman. You have done much for a multitude of peoples. You deserve much in return. Wishing for you all the good KARMA your soul can hold 💫

    • Gwen, I am relieved that the light has not gone out of it. Tough times but times full of learning as well. My love of life only grows stronger. The best to you.

      xo Linnea

  3. Karen cunningham

    I am fully with you on using the good china – not only every day but every meal! You go, girl! Sending hugs and hope. Karen

  4. And…To continue visualizing stability and absorbing all the Love being given and sent to you. That will always be “in the boat with you”

  5. Hi Linnea. Not the result we wanted to hear. Every beautiful comment about you is real and honest. We all love you very much. You are a giver of truth, love and knowledge. I personally have learned so much from you and will continue to learn. There is a group of brilliant scientists, researchers, and doctors out there, who are working very hard to meet your need. xoxo

  6. Ceritinib has activity against G1269A (25x more potent than loralatinib). Combination?

  7. I think about you all of the time, and sometimes I feel like I’m dreaming when I read your posts. And then I read this one, and the mention and reading of the word “ground glass” takes me back. Since I’ve known you, you’ve been the rock star. I know Dr. Shaw has an answer for you, and your body may surprise you. You are The Dudette, my Trailblazer, and you’ve still gotta lotta boat to rock, my friend. Te quiero mucho. Sending high precision laser beams of positivity to you.

  8. Hello! Linnea,
    Hopeful for you because you are such a fighter & in the best hands with Dr. Shaw! I feel so fortunate to be living in NYC & having the best doctors in the world in my backyard. So the same for Boston as you know only too well!
    Know Dr. Shaw will get you out of this mess!
    Laughed when you mentioned about the good china! I was staring @ the special tea set I bought in Bermuda many years ago, hidden in my glass cabinet collecting dust! What am I saving this for? So the good china & glasses are finally getting used, the special lingerie I had tucked away in the back of my drawer, the candles that were too pretty to burn…

  9. HI Linnea,
    I have been following your story my dad had lung cancer.. Have you seen Jane Mclelland’s book how to starve cancer? Approaching it form a metabolic standpoint? She has a facebook group Jane McLelland Off Label Drugs for Cancer. I got in touch with Jane and she responded. She also set up a conf call with others to discuss. Jane beat two caners of her own 20 years ago and is still alive and has helped many others.

    Also Joe Tippens friend him on facebook.. Check out his site http://www.my cancerstory.rocks.. Joe took dog deworming medicine and beat his SCLC.. He has helped I think latest count is 41 people beat various cancers.. Joe also responds..

    Lastly, Care Oncology is using Jane’s metabolic approach they only prescribe 4 drugs a statin, metformin, mebendazole(deworming medicine) and an antibiotic (doxycycline)… Check out http://www.careoncology.com

    I am praying for you Linnea!

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